tag:blogger.com,1999:blog-89885240409572128582024-02-19T20:04:43.183-05:00Funambulism for BeginnersMy take on the delicate task of learning to balance on the tightrope of life as a heart mom, wife, daughter, sister, friend, and attorney.Unknownnoreply@blogger.comBlogger277125tag:blogger.com,1999:blog-8988524040957212858.post-67381487693737322802021-04-14T19:11:00.028-04:002021-04-14T19:11:00.242-04:00"Normal"<p>We have junk drawers and dirty dishes; play video games; balance two working parents, watched class performances, concerts, and plays; attended Cub Scout meetings and Brownies, kissed wounded knees; gotten overly tired at the zoo; had to carry a screaming toddler out of a restaurant; punished a sulking, snotty teen; cursed the school pick up line of cars; delighted at dandelion bouquets; read thousands of stories; drank hot chocolate after playing in the snow; left the laundry in the washer so long it had to be washed again before it was dried; took road trips; and laughed a million and more laughs. We've been parents for over 15 years now if you count pregnancy. We have done it the best we can. We are no different than most parents. </p><p>Yet, we are not the same as most parents either. We were given the option to terminate our second pregnancy due to genetic condition; watched that same child come too close to death on several occasions; flown across the country for second (and third) opinions when no options remained at home; handed our child over to surgeons who stopped her heart and we didn't know if it would start again; rejoiced in her recovery and broke into a million pieces when she declined again; made the decision to stop treatment; lived for 8 years with a child in hospice; broke into millions of pieces again and again and again, each time putting ourselves back together, but never quite the same.</p><p>Several years ago (five maybe six), the Mad Scientist and I had to start working from home several days a week because DQ could not stay in school all day. She was needing to come home frequently. About four years ago, we took our last vacation and had to leave early because DQ was too tired to stay the entire time without her hospital bed. Two years ago, DQ officially became homebound even though she basically had been for some time. A year ago, the pandemic hit and we were all homebound. Shortly after that, DQ became basically bedbound.</p><p>Life is hard for the entire world right now. It is so hard for us. We have zoom school and remote work, we wear masks, social distance, and have all fingers crossed that covid stays away, but that is a backdrop to our life.</p><p>Pain is ever present. We are constantly trying to find a way to alleviate DQ's pain. We were told by hospice last week that there are simply going to be times when she will have pain. That should never be the answer and I'm glad that wasn't told directly to DQ. She needs to believe we are doing everything we can to alleviate pain. It is our daily struggle. It only becomes the more apparent on days like today when she wakes up feeling good. I am able to step back and see where we've been. I still think of myself as the typical parent, but when I am able to unclinch for a minute, when she feels good, I realize that I am not typical. Nothing of our life is typical. </p><p>All I want for my children is to learn, find themselves, and enjoy life more than they dislike it while helping the world more than hurting it. How do we create a "normal" childhood, complete with silly internet videos, fun day trips, and family games, when pain, exhaustion, and nausea are an ever-present companion? That is the question of every moment, even when not spoken. We take normal childhood in slices, I guess. Perhaps a better descriptor would be nibbles of normalcy. I want to give more than a nibble though. That is not possible. And do I really want it? If we get back to "normal" will that mean DQ is gone? If so, nothing will ever be normal again. Fuck, this is hard.<br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8988524040957212858.post-17620668345979223872019-08-01T13:23:00.003-04:002019-08-01T13:25:01.748-04:00Funeral PlanningThe Dancing Queen has been in hospice for over six years now. Four or five years ago, the hospice team made us plan her funeral. We had to find a funeral home, talk to them, start saving quotes, music, pictures, but after a month or so, it was done. We moved on. The arrangements were made.<br />
<br />
Fast forward to now. DQ is no longer attending school as she is too weak. She is very tired often. So much has been stolen from her; from all of us. We are savoring every minute because it always seems very close to the last. Yet, she holds on, smiles, has fun. It seems like she will be with us forever. This teeter-totter of misery and happiness is really difficult to live with. There is no true planning and much of our time is spent concentrating on the now because that is all we have.<br />
<br />
This past spring, as we were beginning homebound life, the "new" hospice social worker (not new for years now, but not the same one we were working with in the beginning) came to the Mad Scientist and I to discuss end of life decisions. We've moved beyond do not resuscitate orders and who to call in case of emergency. No, now was the time for true end of life decisions and what happens next.<br />
<br />
We had to read a book on how to respond to things that sound incongruous coming from a dying person's mouth, but make sense to them. We had to think about life differently and help DQ know it is safe for her to move on; for her to die. We had to assure her (and still have to assure her daily) that our love will last for all time, but that doesn't mean she has to stay here with us or continue to endure simply for our sanity. Because, now, she fears death not because of the unknown, but because of what her death will do to those of us left behind. All of the while, we also have to no lose hope and continue to bring life because the end may still be several years away. The balancing act, the fear, the intense conversations, all of it has been just as emotionally draining as those moments in the emergency room or ICU, where I watched her come millimeters from death. The difference now is that we've been living in this intensity for months now without repreive.<br />
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After the book and discussions, we had to share our funeral plans with the new social worker. Our "plans" were nothing more than ideas. So, we had to actually plan DQ's funeral. Now that TRex is a teenager and DQ a full-on tween, they also had to be involved. Talk about emotional.<br />
<br />
On a Thursday evening in May, my sweet husband had to take TRex to the funeral home where his sister will be laid out. Then, a month later, we had to take DQ to the funeral home because she HAD to see where she would be going. She needed to instruct us on where to place her stuffed animals, how she wanted the chairs arranged, and approve the room where the hospice team will work with DQ's friends on their grief. To say that those evenings were hard is an understatement. The funeral director, owner of the funeral home, who grew up with the funeral home, had to excuse himself when he broke down into tears meeting with Izzy.<br />
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That was just the start of the summer. I've had to plan who will be called upon DQ's death. I had to begin an obituary. Caters had to be called, budgets created, email lists created so notifications will be easy to send. DQ was insistent on the email list and she has already threatened that she will be mad at me for the next two realms of her life if I forget to attach the link to her obituary in the email giving notice to everyone (DQ has decided that she does not believe in the Christian heaven, nor in the returning to what we were before birth version of life MS and I believe as anesthetists; she believes in magic and that she has lived for all time in different realms and that when she dies from this non-magic realm, she will jump to another realm where there is magic and she will be queen).<br />
<br />
I've had to go through photos to create a slide show for DQ's funeral. DQ and I (probably with the help of TRex and MS) will then pick the pictures to be blown up large to be displayed in the funeral home. We've contacted my florist cousin about getting blue roses as DQ desires. I have several messages out to balloon companies seeking ideas and quotes for blue balloons at a funeral.<br />
<br />
I am making tags for DQ's stuffed animals. She wants us to bring all of her stuffed animals to the funeral so that her friends and family can take one home and care for it after she is gone. She is also making teddy bears with her Ma to give to people to remember her.<br />
<br />
I created the start of a bookmark to be available at the funeral home for those who come (akin to prayer cards, but not religious). I can't, however, get myself to work on draft program or the outline of the service. We have discussed the service. Decisions have been made. I have songs that must be played. DQ wants to make a video to be played, but I haven't been able to work myself up to completing that project yet. And I can't get myself to think about the actual service.<br />
<br />
In the beginning, I set a deadline of August 1 to finish all of the drafts. I've done a lot, but there are a lot more things to go. I'm sure I have completed much more than our social worker expected. I also know that it will only get harder to finish these tasks the longer I wait. The entire purpose of starting now is because each day everything is harder.<br />
<br />
How can this be my life? How am I still standing when I feel like every part of my being crumpled in ash on the floor?Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8988524040957212858.post-27117687624466539532017-11-27T11:00:00.003-05:002017-11-27T11:07:52.396-05:00:(The Dancing Queen gave up earlier this year. She wasn't trying. She wasn't living. She wasn't doing anything, except lying to us to play video games and watch tv. She had decided it was easier to stop living than face losing everything. If she gave up on her own, there would be less to feel bad about when she died.<br />
<br />
No, she didn't tell me all of this, but I knew it.<br />
<br />
She had given up. She had admitted to lying to us to leave school. She didn't want to do the work of 4th grade when she didn't feel well. So, instead of trying, she let herself concentrate on how bad she always feels and left school every day.<br />
<br />
I had to pull up my big girl panties and make her stop. I had to tell my dying daughter that she couldn't give up. She had to stop concentrating on how crappy she feels and concentrate on living--even if that meant learning multiplication tables and long division! I had to yell at her and ground her and force her to face reality that she wasn't being kind to others or herself. I had to threaten to take away Christmas presents and keep her from tv for a week. She still hasn't earned back video games.<br />
<br />
How can I take these things away when they help her smile? We don't know how long she has. She could go into a funky heart rhythm and not get out in time and she will be gone and her last days will have been spent grounded and fighting with me.<br />
<br />
Then again, her rhythms may stay okay or at least correct themselves quickly and she could live another ten years. If so, she needs to live--really live; not this half-life where she has already given up. I can't let her do that.<br />
<br />
How do I know the right answer???<br />
<br />
What am I supposed to do!!!!<br />
<br />
I grounded her. I forced her to face the reality that she was giving up on herself. I made her realize how selfish and mean she was to all of us and made her feel bad. I can't have her being a jerk for the rest of her days. But all the while, I was thinking that she deserves to have fun. She deserves comfort. Fuck multiplication!<br />
<br />
But my tough love lesson sank in. She wants to work hard. She wants to try to get back on track. She heard me loud and clear. She doesn't even know if she deserves Christmas presents yet (though, you can be sure, she wants them). She is trying to change for the better.<br />
<br />
With all of that comes huge anxiety over how she behaved before. DQ basically missed the first quarter of 4th grade and is terribly freaked out about catching up. She was so worried about how she will get the work done that she was in tears this morning. I asked her not to worry. I told her she is not in a race with anyone else and that it might take her longer to learn, but I don't care as long as she is trying. I just need her to try. I can't have her giving up. How can I teach her to embrace life and not give up? If she gives up, she will die sooner. I know it. Yet, she is so stubborn. I can't get through to her to get her to try--to live--without making her realize her errors before and then the ANXIETY. She has no balance. It's all or nothing. I had to give her valium just to get out the door to go to school this morning.<br />
<br />
I just want her to try and stop giving up. Please stop hurting yourself, baby girl. Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8988524040957212858.post-47001585079746900792017-10-07T14:26:00.001-04:002017-10-07T14:26:48.692-04:00HumanI learned a long time ago how lonely it is to be a special needs mom. As they say happens whenever tragedy strikes, I quickly learned who was there for me and who was not. I grieved way back when for the losses I felt-- lost friendships, lost family, lost innocence.<br />
<div>
<br /></div>
<div>
I also had to learn something nobody mentions about tragedies: the cruelty of others. People love to kick you when you're down. I was told DQ's disabilities were my fault and punishment for my life choices. I was blamed for her dying. </div>
<div>
<br /></div>
<div>
I learned to live with the pain and abandonment. I found new support systems. I moved on.</div>
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<br /></div>
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Or so I thought.</div>
<div>
<br /></div>
<div>
This week, the abandonment and cruelty of others is hitting harder than it has in a long time. Years even. Perhaps, it hasn't felt this acute since DQ was an infant.</div>
<div>
<br /></div>
<div>
I find myself wondering why people are so cruel. Why I deserve to be treated badly. What I did to be ostracized. </div>
<div>
<br /></div>
<div>
I would love to scream "Fuck you all!" to those who are hurting me and mean it. But, instead, I sit broken and alone. Perhaps it's the last crack in my dam and not this specific cruelty, but I haven't stopped crying all day.<br />
<br />
I am human.<br />
<br />
Fuck you all :(</div>
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-8988524040957212858.post-1136659816752644672016-08-04T12:33:00.000-04:002016-08-04T15:28:20.083-04:00Fading AwayShe is fading away slowly. It is agony to watch.<br />
<br />
This process has hurt for years, but lately, seeing the slow, steady, horrible decline, causes so much physical pain. I literally feel like vomiting when I see her suffer. I ache to the core of my being.<br />
<br />
And that is just me.<br />
<br />
She is in pain.<br />
<br />
She is slow.<br />
<br />
She does not fight as much when she is left out. She doesn't have it left.<br />
<br />
That makes everything all the worse for me.<br />
<br />
Yet, to the rest of the world, all is fine and as it should be. People simply state "how sad" and then ignore her and me because it hurts to acknowledge reality. And then I ache more because I am so much more alone than ever before.<br />
<br />
We are getting more help, but we are drowning. All MS and I do is work. There is no down time. EVER.<br />
<br />
I am exhausted physically, mentally, and in every way possible.<br />
<br />
And as bad as I feel, she feels so much worse. And I can't help her. She won't let me. She told me last night that she doesn't want me to worry more. And that hurts.<br />
<br />
I have nothing left to give, but I have to. I have no choice. I have no choice but to keep pushing forward. I HAVE NO CHOICE.<br />
<br />
And if one person says: "you have to take care of you" or any other bullshit like that, I may have to strangle you. That just shows how alone I truly am because you don't know and don't care to try to know. There is no taking care of me while my daughter is dying. I have to take care of her, her brother, my job (because I have to afford care), my house (because I can't afford to lose it), my husband (because I can't afford to lose him). There is no time to take care of me. Shit, I haven't even had a haircut since January. I shouldn't be taking the time for this, but I had to because I need to get some of the pain out. I told her she needs to try to journal or talk to let go of the bad feelings. How can I preach it, if I don't practice. Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8988524040957212858.post-43066408578263952052016-05-10T18:57:00.000-04:002016-05-10T18:57:00.151-04:00PainThe weight of the world lays heavy on my chest and in my heart. I literally feel it pressing down, each day harder and harder. My shoulders ache, my head is exploding, and my eyes always feel like I just sobbed for hours (even when I haven't). Yes, it could be allergies, but it's not.<br />
<br />
The Dancing Queen is declining. There is no getting around it any longer. She is nearing the end.<br />
<br />
I can't even believe I wrote "the end".<br />
<br />
I don't know how long we will be at this place. I don't know how long "the end" will last, but we've definitely entered a new horrible phase.<br />
<br />
The decline is palpable. It hurts to watch. To feel. To think. To hold.<br />
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I want nothing more than to protect her and pretend it all away, but we can't any more. She knows. She weeps a lot. TRex knows. He asks over and over why doctors don't do more. He criticizes the glacial speed of research, discovery, and the FDA process. He cries.<br />
<br />
We try to make each day memorable. We try to give as much love as possible, but each moment feels so fleeting. There is not enough time. I have so much more love to give, so many more hugs waiting.<br />
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I'm not ready, but I have no choice. Each day, DQ eats less, sleeps more, and is always so very exhausted and in so much pain unless we give her strong meds (which we do routinely now). We can't even pretend that she can do normal 8-year-old things any longer. When we do acquiesce to her demands for normalcy even for a short time, her body is left weaker. It takes longer to recover.<br />
<br />
I knew this was coming--the inevitable turn in path we started down years ago. I knew this would hurt in way I could never imagine. But this hurt is so much worse than anything I have ever encountered; magnitudes of order worse. Yet, I'm only at the beginning.<br />
<br />
So, yes, when you see my girl, you'll think she is tiny. You probably won't be able to see the ribs that show through her delicate skin. You'll assume the deep bags under her eyes are from lack of sleep. If she doesn't eat around you, you'll say its because of all of the fun she is having and kids never eat when they are with their friends. Or you'll see her gobble half a scoop of ice cream and assume that is dessert, when it really was my desperate attempt at getting her some fat. You'll notice the bruise and think she bumped herself a couple of days ago, not knowing she heals very slowly now and bruises last weeks. You'll pretend everything is okay because that is how we try to be. But it's not okay. It won't be okay ever again (if it ever was).<br />
<br />
I don't expect anyone to have answers and I don't expect anyone to know what to say if they do notice my sweet vivacious girl is slowing down. It's okay. There is nothing to say. Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8988524040957212858.post-54690173383697241872016-02-26T23:20:00.001-05:002016-02-27T07:38:43.232-05:00What a week!<p dir="ltr">I can't even believe what a shitty week this has been.</p>
<p dir="ltr">It started last weekend with so much work that there was no time for much of anything except more work! DQ was so bad too. she was misbehaving non-stop. MS and I were both at our wits end. Seriously, DQ spent more time on her room thinking about her behavior than anything else.  Do you know how hard it is to get through to a child in pain that she can't treat everyone around her badly because she is in so much pain?!?! It took hurculean will to deal with her and we still lost. </p>
<p dir="ltr">Monday came and DQ had an appointment with a neurologist in hopes of finding relief from abdominal migraines. The problem was that DQ got a migraine, complete with many rounds of vomiting as we tried to leave. We were late and then DQ vomited many more times in the reception waiting room.</p>
<p dir="ltr">Two hours later, we left the doc with more meds and a lot more questions, including the possibility that DQ's debilitating migraines may have been brought on by sildenafil. I raised this idea years ago , but was told "no, sildenafil doesn't cause stomach ache." After talking to the neurologist and researching on my own Monday and Tuesday, I decided on my own that  it is likely sildenafil has caused this excrutiating pain for the last 2 years! </p>
<p dir="ltr">And the guilt hit. If I had researched more two years ago,  could I have ended her pain earlier? </p>
<p dir="ltr">While I had my epiphany, DQ was still in mountains of pain and thus behaved horribly. At therapy Monday night, MS and I discussed how her behavior was hurting us. It was raw and painful, but we came to some decisions as we drove home to better address her pain and keep us sane.</p>
<p dir="ltr">We got to try it out as soon as we walked in the door as DQ was fighting with my mom.</p>
<p dir="ltr">Tuesday morning, DQ fought more.  I got her to school, but it was not easy. And at 11:00 am, school called because DQ had a nosebleed that led to a migraine. DQ asked to take a nap then and did so until MS could get there. DQ had missed so many days of school already because of pain, then this. My head couldn't help but think we'd have to pull her from school if no answer was found to the migraines. </p>
<p dir="ltr">By 1:00pm, MS was there to take DQ to the dentist (a horrific experience on the best of days). Then the dentist tells DQ she must give up her pacifier because her teeth are showing signs of its use. </p>
<p dir="ltr"><a href="http://funambulismforbeginners.blogspot.com/2011/11/pacifier.html">Needless to say, DQ did not take the thought of losing her only comfort item in this cruel world very well.</a> Neither did I. I sat there, thinking of my sweet little girl, in so much pain (that may have been caused by medicine I gave her), and we were supposed to take away her only comfort item--her only tool to make it through needle pokes, migraines, and nightmares! I was angry and sad.</p>
<p dir="ltr">Thankfully, after crying quite a bit, our PCP said the dentist was crazy and DQ got to keep her pacifier. Her comfort was and is more important than orthodontia she is not likely to ever get!</p>
<p dir="ltr">Drained from all of that, we had a snow day. I was staying with the kids trying to work,  when I realized I typed a deadline wrong.  I had a brief due on the snow day and not the next day.  I had to draft it all and file it while addressing the needs of the kids!  WTF! I never make those errors,  but I did with that day!</p>
<p dir="ltr">Thankfully,  MS came home early to help. Just as I hunkered down to finish, the cardiologist called. I was calm during the call. I took it in stride. <a href="http://funambulismforbeginners.blogspot.com/2016/02/broken.html">But as you already know, it broke me.</a>  I mean how screwed up is it to get a phone call that made me hope I was giving my daughter toxic levels of digoxin. SERIOUSLY, HOW SCREWED UP IS MY LIFE TO HOPE MY DAUGHTER HAS TOXICITY!!!</p>
<p dir="ltr">After migraines, sildenafil, loss of pacifiers, fighting, emotional trauma, and work deadlines making life hell, I certainly didn't need toxicity or the worse alternative in my life. Our lives. I'm ready for some good news if only the universe would conspire for good and not evil. </p>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8988524040957212858.post-43691528675069768452016-02-26T15:52:00.000-05:002016-02-26T15:52:34.124-05:00brokenYou get bad news often enough, you prep for it. You're hardened. Start thinking: "Bring it on; I can handle anything."<br />
<br />
But I can't.<br />
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I can't handle most things. In fact, I've been broken so many times, it is a wonder it is possible to break me any longer. Yet, here I am shattered into billions and quintillions of pieces.<br />
<br />
I don't know if everything is wrong or nothing.<br />
<br />
DQ wore a <a href="https://www.nlm.nih.gov/medlineplus/ency/article/003877.htm" target="_blank">holter monitor</a> last week for 48 hours. It wasn't the first time she's done this. Hopefully, it won't be the last.<br />
<br />
The cardiologist called yesterday. Three years ago when DQ did this test, she had 261 <a href="http://www.cardiachealth.org/premature-atrial-contractions-pacs" target="_blank">PACs--premature artial contractions</a>. Everyone has those. They are no big deal. But, last week, she had well over 10,000 PACs. I think the word was 10,800 or 10,600. What I KNOW I got right was that 3.8% of the time, DQ is having PACs. This is not necessarily a concerning number in and of itself. It is quite a change though.<br />
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Three years ago, DQ had no <a href="http://www.cardiachealth.org/premature-ventricular-contractions-pvcs" target="_blank">PVCs--premature ventricular contractions</a>. Last week, she had 51. Again, not that big of a deal.<br />
<br />
BUT, DQ had 6 times with 3 PACs in a row and a couple times with 2 PVCs in a row--cuplets. Those could be something. Those are a heartbeat away from dangerous tachycardia and other horrible things that could happen. That I can't type.<br />
<br />
But, I think it all.<br />
<br />
The cardiologist's first thought was DQ's digoxin dose may be off and she has toxic levels now. We are trying to get her blood tested ASAP to find out. Hopefully, that can be turned around quickly and get her back into a better rhythm. Hopefully, that leads us to an easy answer.<br />
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But what if it doesn't?<br />
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It hurts to think what could happen and I can't stop myself from thinking.<br />
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Tears have been flowing all day.<br />
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People walk into my office and I try to wipe my face, but it's no use. I'm just a mom with a child in hospice, given bad news. And once again, we're in limbo land with no answers and so many scary questions.<br />
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This may be a blip, but it could be so much worse. And I'm broken.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8988524040957212858.post-16819171571106059042015-11-18T07:38:00.000-05:002015-11-18T07:38:15.272-05:00Wordless Wednesday: Morning Routine <div class="separator" style="clear: both; text-align: center;">
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8988524040957212858.post-28461460944658364322015-11-17T13:12:00.000-05:002015-11-17T13:54:34.453-05:00Friendships<i><span class="null">Good morning, sweet girl! How did you sleep?</span></i><br />
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<span class="null">"Good, Mommy."</span><br />
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<i><span class="null">Are you ready for the day?</span></i><br />
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<span class="null">"Yes, I guess."</span><br />
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<i><span class="null">What's wrong DQ?</span></i><br />
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<span class="null">"My best friend ("BF") plays with lot of other kids now and won't play with me or eat lunch with me any more."</span><br />
<span class="null"><br /></span>
<i><span class="null">I'm sorry to hear that. You know, friends come and go as you both change and grow and interests change. She is probably meeting other kids in her new classroom that she wants to know better, just like you are. It doesn't mean you have to lose the friendship you've had or let go of the warm memories. You can keep her in your heart even if she chooses to play with other kids at recess. </span></i><br />
<span class="null"><br /></span>
<span class="null">"But I miss her and I want to play with BF."</span><br />
<span class="null"><br /></span>
<i><span class="null">I know, honey, it's hard when friendships change, but it is part of life. Everybody goes through this from time to time. One of my favorite quotes is: "<a href="http://funambulismforbeginners.blogspot.com/2011/06/busboys.html" target="_blank">"It happens sometimes. Friends come in and out of our lives, like busboys in a restaurant."</a></span></i><br />
<br />
<span class="null">Then I had to explain what a busboy is and the Dancing Queen asked: "But why do friends go?"</span><br />
<br />
<i><span class="null">There are so many reasons, baby. Sometimes you start liking different things. Sometimes the friendship is a reminder of something one friend doesn't want to remember. Sometimes there's fights. Sometimes you just become separated by distance. There could any number of reasons or no real reason. It just happens. That is part of life.</span></i><br />
<br />
<span class="null">"But Mommy, BF's dad told her she was no longer allowed to play with just one kid all of the time so she cannot have lunch with me or play with me any more."</span><br />
<br />
<i><span class="null">Oh. </span></i><br />
<br />
<span class="null">"Why would he say BF can't play with me any more?"</span><br />
<br />
<span class="null">I had to do some very fast thinking and try to hide the anger and frustration I felt at this man I have never met. </span><br />
<br />
<i><span class="null">Dancing Queen, I don't know why specifically he wants BF to not play with just one kid, but lots, but I can imagine he feels this way for the same reason we send you to the school you attend. </span></i><br />
<span class="null"><br /></span>
<span class="null">"Why is that, mommy?"</span><br />
<span class="null"><br /></span>
<i><span class="null">Well, did you know your school is one of the most diverse schools in the state? There are all types of kids with all types of backgrounds at your school. With so many kids with parents from around the globe, you get to learn different things and the more cultures and backgrounds you are exposed to, the better person you will be because you can understand more. I would guess that BF's dad wants her to learn about other people so that she can have a broader knowledge of people and understand more about life.</span></i><br />
<span class="null"><br /></span>
<span class="null">"I don't understand, Mommy."</span><br />
<span class="null"><br /></span>
<i><span class="null">Do you remember the many conversations we've had about people doing bad things to others simply because those people looked different or believed differently?</span></i><br />
<span class="null"><br /></span>
<span class="null">"Yes. They shot Martin Luther King and killed people in Paris because they were different."</span><br />
<span class="null"><br /></span>
<i><span class="null">Yes. One way to help stop that sort of hate is to get to know other people, different from yourself, with different backgrounds, different cultures, different religions. Because as you get to know people who are different than you, you realize that . . . </span></i><br />
<span class="null"><br /></span>
<span class="null">"We may be different on the outside, but we're all the same on the inside."</span><br />
<span class="null"><br /></span>
<i><span class="null">Exactly. Think about your class. Does everybody look the same? Do they all have the same skin color? Wear the same clothes?</span></i><br />
<span class="null"><br /></span>
<span class="null">"No, but Mommy, if they looked inside me, they'd see I'm different."</span><br />
<span class="null"><br /></span>
<i><span class="null">When we say we are all the same on the inside, we're not talking heart and lungs. We're talking feelings. Each of us feels sad sometimes; each of us feels happy, angry, lonely, scared sometimes. We are all the same on the inside because we all feel--just like the movie "Inside Out". That is how we connect with other people--through feelings, through talking and learning that we all feel.We can all hurt and be hurt. We can all laugh and smile. We all love. Everyone has that in common.</span></i><br />
<br />
<span class="null">"But Mommy, why would BF's dad not want her to play with me?"</span><br />
<span class="null"><br /></span>
<i><span class="null">My guess is that BF's dad wants her to talk to lots of people, to learn about them, to connect to them, so that she can understand more people and learn different ways of life. And by telling her to play with other kids, he's not saying she can't be your friend any more, just that she needs to meet more people and get to know them. Just like you became friends with V for the first time this year. She is from a very different culture than us, right?</span></i><br />
<span class="null"><br /></span>
<span class="null">"Yeah! The Indian dance she does is so fun and different."</span><br />
<span class="null"><br /></span>
<i><span class="null">But you two are similar on the inside, right?</span></i><br />
<span class="null"><br /></span>
<span class="null">"Yeah. We both laugh at the same things."</span><br />
<span class="null"><br /></span>
<i><span class="null">BF's dad probably wants that for her too.</span></i><br />
<span class="null"><br /></span>
<span class="null">"I guess."</span><br />
<span class="null"><br /></span>
<i><span class="null">It's okay if it hurts. You are allowed to hurt when you can't play with your best friend much any more. But remember, this is your opportunity to get to know somebody else as well. No matter what happens with BF, you can still keep her in your heart.</span></i><br />
<span class="null"><br /></span>
<span class="null">After hugging my sweet seven-year-old for a very long time, she slowly walked away to brush her teeth.</span><br />
<span class="null"><br /></span>
<span class="null">Hours later, I still can't shake the feeling that washed over me as DQ told me all of this. I was sad, angry, frustrated, hurt, all of the above and so much more.</span><br />
<br />
<span class="null"><a href="http://funambulismforbeginners.blogspot.com/2011/03/why.html" target="_blank">I've been dealing with DQ and friends (or lack of friends) for years</a>. <a href="http://funambulismforbeginners.blogspot.com/2011/07/unfair.html" target="_blank">She's never quite fit with her agemates</a>, but BF was different. BF loved her even through their differences. The girls lit up when together. BF would push DQ in her wheelchair so DQ could come along. BF is one of those girls all of the others want to be like, but she would choose DQ to talk with and laugh. </span><br />
<span class="null"><br /></span>
<span class="null">Earlier this schoolyear, DQ was not invited to BF's birthday party. I knew about this through Facebook and it hurt, but DQ did not know (at least she did not tell me). I figured the girls were drifting apart, but after that, whenever they were together, the girls were the same as always. There'd be a ton of other kids around and BF would seek DQ ought to have fun together.</span><br />
<span class="null"><br /></span>
<span class="null">Then, this morning, learning that BF's dad doesn't want BF to be best friends with DQ any longer, it all came together.</span><br />
<br />
<span class="null">BUT WHY??????</span><br />
<br />
<span class="null">If DQ has been mean to BF, shouldn't I have been told?</span><br />
<br />
<span class="null">DQ would have told me if they had had a fight. She always tells on herself. </span><br />
<span class="null"><br /></span>
<span class="null">If DQ and BF were transitioning apart, why would BF be forbidden to play with DQ? Let the friendship take its natural course. </span><br />
<br />
<span class="null">The only reason for forced segregation of the girls, <i><b>at least</b></i> <b><i>in my head</i></b>, is because DQ is dying. Logically, I can see a dad rationalizing that ending the friendship before DQ dies would make the death hurt BF less.</span><br />
<br />
<span class="null">But . . . REALLY? </span><br />
<br />
<span class="null">Teaching your child to abandon (and ostracize) their terminally ill friend because being close to them is too hard seems like a totally fucked up lesson.</span><br />
<br />
<span class="null">Maybe that's why so many people do cruel things in this world: rather than facing the hard lessons, people choose the easy way out and go around the mess. Personally, I feel like we need to admit that life is messy and part of growing up is learn to deal with the mess, even though it is unpleasant and hard.</span><br />
<br />
<span class="null">Maybe I'm all wrong. But i</span><span class="null">f DQ has done something wrong (other than dying), I
wish they would talk to us so that she can know how her behavior affects
others.</span><span class="null"> </span><br />
<span class="null"><br /></span>
<span class="null">No matter what the reason behind BF's dad's decision, it sucks and it hurts that two kids who were the best of friends have to be torn apart rather than life taking it's natural path.</span><span class="null"></span>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-8988524040957212858.post-39807232393844094762015-11-16T19:22:00.000-05:002015-11-17T11:08:21.130-05:00Running AwayYesterday was hard, so very hard.<br />
<br />
The day before, Saturday, DQ was in a lot of pain, but had big plans. She forced herself to enjoy the moment, despite the pain. By the end of the day, she was too exhausted, too spent to walk from the handicap space at the restaurant to the table. We had to use the wheelchair. A first for such a short trip.<br />
<br />
So, on Sunday, DQ was extra tired. She tried to be happy, but she did not have the energy to maintain the joy. She had to have many moments alone to calm down.<br />
<br />
At one point, after a big meltdown and fifteen minutes to cool down, I went to DQ and held her. She explained that she doesn't know why, but lately, she just feels angry.<br />
<br />
I asked her if she was in pain (I knew she had been for days).<br />
<br />
She said: "Yes, Mommy, and I don't feel good. I don't know why, but I don't feel good."<br />
<br />
<i>I know, honey. Do you think you might be angry because you are feeling worse?</i><br />
<br />
"I don't know, Mommy. I don't know why I'm angry."<br />
<br />
<i>That's okay, DQ. You don't have to know why you are angry. </i><br />
<i><br /></i>
<i>I know sometimes I get angry or irritable when I don't feel well.</i><br />
<br />
"Really, Mommy?"<br />
<br />
<i>Yes, but it does not give me the right to treat people badly.</i><br />
<br />
In her most downtrodden voice, she obliged me by saying: "I know. I have to be nice."<br />
<br />
<i>Yes, but we do understand if you are not feeling well and you can tell us that. We will help you as much as we can.</i><br />
<br />
She thought for a long time, snuggled deep into my arms.<br />
<br />
"Mommy, sometimes I feel like running away."<br />
<br />
My heart broke in two, but I somehow managed to assure her that everyone feels like running away sometime, but that running away doesn't solve problems, it just leaves them there for another day and takes you away from your support structure and the good things in life too, like family, love, and home.<br />
<br />
"But, Mommy, why does life have to be so hard?"<br />
<br />
<i>I don't know, baby. I don't know. Your life is very hard, but we try to help you where we can. We try to give you as much love and enjoyment as we can, but I do not know why your life has to be so hard. It just is. I'm sorry.</i><br />
<br />
"I love you, Mommy. You are the best Mommy in the world."<br />
<br />
<i>I love you too, baby. You are the best daughter in the world.</i>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8988524040957212858.post-1038120819787945312015-11-13T20:34:00.002-05:002015-11-16T09:43:00.219-05:00Bedtime Routine<div class="separator" style="clear: both; text-align: center;">
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Just like every family with children, we have our bedtime rituals. We head upstairs around 7:00p.m. and the kids get their jammies on. DQ does a running leap onto my bed, where MS has laid a pillow at the foot.<br />
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<br />
DQ lays there while MS brushes her teeth (doctors orders to get her to behave better at the dentist and get better clean).<br />
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<br />
When MS finishes, DQ jumps down from the bed, runs to the bathroom with her toothbrush spinning, climbs on her stool, and finishes the job herself. She chooses the exact dixie cup out of the stack (pink of course). And rinses.<br />
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<br />
<span id="goog_1050644416"></span><span id="goog_1050644417"></span>Then it is off to her bedroom to choose a story. DQ still loves the shorter books that give one entire story in a sitting, with lots of fun pictures.<br />
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<a href="http://funambulismforbeginners.blogspot.com/2012/09/ack-attack.html">Pinkalicious</a> is still one of her all-time favorites. <a href="http://funambulismforbeginners.blogspot.com/2012/01/wishes-do-come-true.html">Mickey</a> too. Nowadays though, DQ reads us the books. So, after DQ picks out the perfect book, she scurries back to our bedroom, does another running leap into the bed, snuggles down between MS and I and begins to read.<br />
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Perhaps you are wondering where TRex is in all of this. He is so pokey! He will be in the bathroom brushing his teeth by this point and we'd be lucky if he has the tshirt he plans to wear picked out (he always wears one of MS's tshirts to bed). TRex usually joins us in the bed for the story near the very end.<br />
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<br />
DQ reads the stories and she does so well. She is a very good reader. I could listen to her for hours. My favorite for her to read are the Gerald and Piggy books because she does the most wonderful voices. DQ considers herself Piggy.<br />
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When the story is done, she jumps into her daddy's arms and lays her head on his shoulder as he carries her to her room. I love laying in the bed, watching them walk away. It is so sweet.<br />
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Last night, I laid in my bed, watching her be carried away and she asked "Are you coming, Mommy?"<br />
<br />
<i>Of course, baby. I'll be there in a minute.</i><br />
<br />
And then I sobbed because I know these moments are fleeting. There is going to be a time (potentially very soon) that she won't be walked down that hall at the end of the night in her daddy's arms. She won't be reading me stories. She won't be doing running leaps into the bed.<br />
<br />
My heart literally ached. My body shook. HOW CAN THIS BE HAPPENING?<br />
<br />
Too many nights these days, she's already too tired to read. Or we have to carry her to the bed.<br />
<br />
And I know much of my pain is directly related to a particularly bad night DQ had the night before. I know I was extra tired from lack of sleep and additional worries. But that does not change the fact that despite our recent respite; the moments of calm we've lived in these last several months, DQ remains very sick. She is dying. And in my weak moments, I feel it acutely.<br />
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8988524040957212858.post-1457657953303991492015-06-25T18:59:00.000-04:002015-06-25T18:59:00.049-04:00Waves of GriefThe phone rings. I pick it up, answer the question, then hang up. I review some documents, answer more questions. In the midst of reading an innocuous document, recounting notes of disputes I am litigating, I'm suddenly knocked down. There is a catch in my throat and tears begin to stream down my face. The sadness envelopes me in such a strange and powerful way. I can no longer concentrate and all I want is to hold my family close and never let them go, but of course, they are not with me as I am at work. My body aches from the depths of the grief. It takes hours, sometimes an entire day to shake the feeling and return to normal--whatever that is. Then, just as suddenly, it happens again.<br />
<br />
I don't know why I'm having these waves of grief; these moments of complete sadness. There is no rhyme or reason for how long it lasts (at least that I have figured out). Some weeks simply are hard for no apparent reason. Obviously, DQ is still sick. She is still in hospice. She still struggles daily. She is still the same size she was a year ago. And the deep dark circles under her eyes are worse now. But it really shouldn't be cause for these sudden waves of crushing sadness. Nothing dramatic has happened, yet I am having dramatic, inexplicable reactions.<br />
<br />
Why?<br />
<br />
Perhaps if I kept a log, I'd know where it all is coming from. Perhaps if I saw myself from the outside, I'd question why this hasn't happened all along. Perhaps 7.5 years of living in an emergency has finally worn me down and I can no longer keep myself together. Perhaps there is no answer. Perhaps that is the answer.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8988524040957212858.post-79363650418170692452015-02-19T09:58:00.000-05:002015-02-19T11:06:52.243-05:00Emergency is OverFor so long (over seven years now), the Mad Scientist and I have been in emergency mode. Comfort and peace did not seem possible. In the back of my head, I was waiting for the calm before I would try to find a semblance of normalcy. I was constantly telling myself: "When DQ is better, we will do this or that; we will be happy."<br />
<br />
The whole sick child thing is weird. It made the Mad Scientist and
I closer in many, many ways, yet further apart as well. I'd let him do
his thing, grieve and deal in his own way. I'd do my own thing. All the
while, we were both alone, even though we were very much together and
doing everything as a team--except grieve. <br />
<br />
In the earlier part of last year though, the Mad Scientist and I decided we couldn't continue to grieve alone. We started to see a therapist together. We go every other week to work through our grief together and to understand each other better. We are trying to build ladders so that that wall that is our differences in dealing with a sick and dying DQ can be climbed. It has been a lot of work, but worth it.<br />
<br />
The best part is that we are doing this together. We are no longer alone in our grief.<br />
<br />
I have learned so much about the Mad Scientist and what he is going through. It has been such a blessing. I do feel closer to him in a way that has been missing for so much of the emergency period. And I know how to relate to him better and how to let him grieve.<br />
<br />
What has been surprising though is how much I've learned about myself as well.<br />
<br />
Last week, I had one of my biggest revelations. I'm still working through it in my head (hence the need to blog), but I wonder why the thought never materialized before. <br />
<blockquote class="tr_bq">
<i>Life sucks now because DQ is sick, but life is always going to suck in that way: DQ is always going to be sick or else she will be dead and that will make life suck all the more. We have to learn how to live despite the fact that nothing will ever be completely good again. There is never going to be a moment in the rest of my life that will not have a tinge of pain, so I have to learn to make peace with that.</i></blockquote>
I know this should have been obvious for a long time--at least since DQ was admitted to hospice--but it hit me like a ton of bricks. It continues to hit me; almost like the bricks are falling one at a time through a hole in the burlap bag hanging overhead and I can't move out of the way . . . Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8988524040957212858.post-3565849698296540752015-01-24T12:27:00.001-05:002015-01-24T15:46:27.030-05:00Top Ten Things To Do For Parents of Critically Ill Children<div dir="ltr">
When we were funeral planning, I started writing this post. I just found it today when I was seeing what thoughts I had that hadn't quite made it to the finished product. The more I thought about this post, the more I felt compelled to complete it as its been mulling around in my head since October.</div>
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<br /></div>
<div dir="ltr">
At that time, I found myself listing things I didn't want to happen during our immediate grief--things that trigger anger in me; that I know will cause me to explode at an unsuspecting good-doer. During our funeral planning, I also identified people who could shield me from the horrible things I've seen well-intentioned people say to the bereaved (and I may have said before I opened my eyes). I started thinking of plans to escape the ignorant statements people spew because it makes them feel better and they've never thought about how it feels to the person who is grieving most.</div>
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It is too soon for me to write about all of that. It's not my experience yet. I only know what I know from watching others mourn. I know my fear of what people will say to me, but I don't know how I will really react. I may never be able publish a post about that because too many people troll to start a fight and I don't have it in me even now and when I really have the perspective necessary to write THAT post, I will be way more vulnerable. That's why I identified people to help me.</div>
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<br /></div>
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What I am strong enough to say is what I know today: what I've lived and what I still live everyday. It is a similar post, but from the perspective of a mom to a terminally ill child. And if you want to troll and tell me I'm selfish, I'll tell you that's right. This post is my top ten wishes of what people would say and do for us. I think the same is true for all families with critically ill children. Keep this wish list in mind when your friend or family member has added full-time caregiver to their list of parent chores. </div>
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<ol>
<li><b>Don't ignore that my child has a terminal illness.</b> I don't mean it has to be a topic of conversation (unless you have questions), but it does mean that my concerns regarding my child with regard to everything have a different depth than what goes into your calculus when thinking about concerns. While it is perfectly normal and fine to be concerned that your healthy child is having difficulty understanding a concept in math and you are worried that may hold them back academically, don't be annoyed when my child has the same difficulty and I say "such is life". My child is not going to live to be an adult. I'm not building her to be a successful adult. I'm building a successful childhood--that includes normal kid things like school, but we don't sweat the small stuff. The concept will come and if it doesn't, I'm not that concerned. We are not putting stress on a first grader to be a perfect student. (Same thought process with her still using a pacifier to sleep at almost 7!)<br /><br />On the same front, decisions about what I can do and where I can go are determined by my children. I can't leave town for a couple nights. I just can't. The nature of heart failure means that DQ can go from fine to on the edge in a matter of hours. Leaving town is not an option for me. I will be too worried. I almost had a mental breakdown a couple of weeks ago when I had to leave town for work. It doesn't mean I don't want to see people who live far away; it just means I can't go to you and I can't meet in the middle. It might not be fair, but life is not fair.</li>
<li><b>Ask questions.</b> If you want to know why the Dancing Queen looks so healthy, ask! I will gladly explain as much as you want to know. I've done tons of research about my daughter. I know her diseases inside and out. I don't talk about what I know a lot (even if I do talk a lot), but I will gladly share. I've learned through the years that most people don't want to know what I'm thinking, I've learned, how I feel. Or at least that is the impression given. So if you really do want to know, ask.</li>
<li><b>Never ever start a sentence with: "at least".</b> If you hear those words
coming out of your mouth, shut it. There is no comparison you can make
that won't make the situation worse. I'm of the opinion that the words "at least" ought to be banned from the American lexicon completely!</li>
<li><b>Remember it doesn't stop.</b> DQ hasn't been hospitalized for a couple of years (knock on wood). Part of that is because we do have her in hospice now and can do some things without the ER that we couldn't before. Despite being in hospice, she is quite stable. She goes to school and she looks "normal" on the outside. But she is still in heart failure. She still has a prognosis that she will not live to be an adult. It was only two years ago, when her heart was healthier, that we were told she has 3-5 years left. Because there is no emergency does not mean our worry has lessened or that our lives are any easier. None of it stops. I understand human nature is to be concerned for the first five minutes of a catastrophe and move on after that. We have to otherwise we would go insane since there are so many catastrophes in the world. But for us, this catastrophe doesn't end. If you remember that when talking to us, it will give you perspective. </li>
<li><b>Help.</b> Especially when we are in the hospital, having big tests, or a illness has struck and we are locked in, help is so welcome. While we appreciate the offers of help, we do not have the time or energy to call and ask for it. Real help is showing up and doing it. Don't expect us to entertain. One of the best things ever done for us was when my aunts and mom came to our house one day when we were in the hospital and cleaned. I will never forget it.</li>
<li><b>Food is always welcome!</b> We love getting food. There are days when it
is just too hard to think about cooking. And most takeout can't be eaten
by DQ, so we love food. If you do bring food, please make it healthy and in a container that never has to be returned (they sell disposable bakeware with lids now perfect for this). Having to return a container though is even harder on us than cooking in the first place. It sits on the counter everyday reminding us again of more things we have to do. It is draining.</li>
<li><b>Be there.</b> Having a sick and special needs child is lonely. You are constantly taking them to medical appointments, meetings at the school, and pharmacy. Our spare time is spent researching, making appointments, and trying to find ways to help your child feel normal. (You would be surprised how much time is spent figuring out things to do that let my kids feel normal without making them feel worse about themselves because they have motor delays or heart failure keeps DQ down.) Having a friend be there--sit and have coffee; come over. If you make a plan for your friend who is a special needs mom, a plan they do not have to make themselves, you will be a hero. We desperately want to feel normal and be with friends, but don't have the energy to make any other plans.</li>
<li><b>Go to the hospital.</b> Sit on the sidelines, don't expect to be entertained, but be there. Bring veggies and good coffee. Offer to sit with the sick child so mom or dad can pee or get some food (DQ would never let us out of her sight when in the hospital). Or if you can't be at the hospital, take their other children for a fun day (bring them to the park). </li>
<li><b>Remember the siblings.</b> If you bring a gift for the sick child, do the same for the siblings. So many times, people feel bad for the sick child. That is proper because the child goes through hell. But just because the sibling is healthy, doesn't mean they are not going through hell too. Life in a house with a terminally ill child is hard on everyone. Can't afford two gifts, don't bring any. The kids don't expect gifts. They do LOVE visitors though.</li>
<li><b>Never say "everything will be fine". </b> That is one of my biggest pet peeves of all. I hear it in tv shows all of the time too and scream at the tv (ask my husband, he will confirm). You have no idea if everything will be fine. For us, it won't be fine. When you say "everything will be fine" to your friend, you are dismissing their real feelings in a negative way and diminishing what they are going through. It is not helpful because it means you do not grasp the gravity of the situation. Just don't say it! Instead, you can say "I don't know what to say, but I'm thinking of you and want to be here for you." Ask your friend if they'd like to share their concerns. Or don't say anything at all, but give a hug. </li>
</ol>
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I offer this question up to all of my friends who are moms to critically ill children or children with special needs: What would things would you add if this was your top ten list?</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8988524040957212858.post-9515514499816219962014-12-12T05:32:00.000-05:002014-12-12T11:07:14.841-05:00National Believe Day 2014Once again, it's <a href="http://social.macys.com/believe/?cm_mmc=VanityUrl-_-believe-_-n-_-n" target="_blank">National Believe Day</a>, where all letters to Santa dropped off at Macy's raises $2 for <a href="http://wish.org/" target="_blank">Make-A-Wish</a>. Every year, this event gets bigger and bigger and I couldn't be more happy. Make-A-Wish is truly an amazing organization that can use all of the help it can get.<br />
<br />
<a href="http://funambulismforbeginners.blogspot.com/2011/12/national-believe-day.html" target="_blank">Three years ago on National Believe Day</a>, we were preparing for the Dancing Queen's wish trip. <a href="http://funambulismforbeginners.blogspot.com/2012/01/wishes-do-come-true.html" target="_blank">Her trip was magical</a>, even though <a href="http://funambulismforbeginners.blogspot.com/2012/01/cost-of-wish.html" target="_blank">emotionally draining</a>. I will have memories forever. The granting of DQ's wish brought joy and excitement like we've never seen before and made this life easier. It was more than a vacation. It was truly a wish fulfilled.<br />
<br />
<a href="http://funambulismforbeginners.blogspot.com/2014/11/lost.html" target="_blank">While DQ no longer believes in magic and she knows Santa is not a real person</a>, she still believes. On this National Believe Day, I hope you will drop your letter to Santa at Macy's and give another family a smile that will last through all the horrors of childhood illness.<br />
<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8988524040957212858.post-57346015495676627362014-12-11T12:35:00.000-05:002014-12-11T14:05:38.121-05:00The ChoiceEver since the Mad Scientist and I visited the funeral home at the urging of DQ's hospice staff, I've had some very heavy thoughts and emotions. I have been more sleepless than normal. Agitated. Unwell.<br />
<br />
Actually, now that I think about it, the visit to the funeral home didn't cause me this consternation, but the follow up visit with hospice later that week has done me in.<br />
<br />
Really, the visit to the funeral home helped me more than I expected and calmed me in a way I did not realize that I needed. It made me feel like I would be able to say goodbye as I needed to, in my own time. That comforted me greatly.<br />
<br />
We were told that DQ could stay in our house as long as needed and when we were ready, the funeral home would pick her up in an unmarked van for our own privacy and comfort. They promised not to rush me and not to intrude in our home in an abrasive or cold manner. We were assured that the funeral home would take the utmost care of our
precious daughter and that she would be treated in as much respect upon
her death as we expect in her life. And she wouldn't be alone as she so greatly fears.<br />
<br />
A couple short days later, the hospice social worker pulled the Mad Scientist aside and told him we had to think about organ donation. There wasn't much to think about though because we have always been in great support of organ donation. Donated tissues saved DQ's life as a baby!<br />
<br />
But there was more.<br />
<br />
If we want DQ to be an organ donor, she will have to be rushed away to the hospital immediately upon death. There will be no thoughtful, peaceful goodbye. The caring team we met at the funeral home will not be in charge. She will be in some ambulance, scurried off on a gurney, maybe even left in a hallway at the hospital as I've seen done tons of times before. She will be all alone and in the place that scares her most--the hospital.<br />
<br />
Having to choose has tormented me in a way no other decision has before.<br />
<br />
I know the importance of organ and tissue donation. I've begged people to become donors. I've been listed as a donor since I received my driver's license. I have friends whose children have been given a second chance at life because of organ donors and friends who have lost children because a donor could not be found. We considered heart and lung transplant for the Dancing Queen and if it had been safer for her, we would have probably done it. I have countless friends with their children on organ donor registries right now. I know how important this is! I want to donate the Dancing Queen's organs.<br />
<br />
But I can't imagine letting her go immediately. I can't imagine letting her go at all, but having to agree to her being ripped out of my arms, taken from our home in an emergency to the place she fears most!!!!!!!!!!! That seems to defeat the entire purpose of hospice. What dignity is there in that?<br />
<br />
And what could they use from her anyway? Her heart and lungs are already destroyed. Her liver and kidneys have begun to be damaged and will likely be much worse by that time. Her beautiful eyes would be the only real thing left to use. Yet the only organ that must be transplanted live is the heart. Why would she have to be carted away immediately, in such a cruel and heartless way? No wonder it is so difficult to get people to agree to organ donation.<br />
<br />
And before you start spewing vitriol in my comment section, I'm not writing this to get your opinions of what an awful person I am for considering to not donate my daughter's organs upon death or to hear what a hypocrite I am. I'm already feeling that on my own. I'm also not writing to seek support for whatever decision we end up making. I just need to get it out there so I can let go and hopefully come to some decision. Unknownnoreply@blogger.com10tag:blogger.com,1999:blog-8988524040957212858.post-74463013797539822062014-11-10T12:43:00.000-05:002014-11-10T12:43:18.545-05:00LostThis October was the longest month of my life. It started in the most horrific of fashions. I wasn't even sure the Dancing Queen would still be with us at this point. It seems like a miracle to me that she has had a complete turnaround and is back to the DQ we had before the summer. The whiplash of emotions has left me drained beyond comprehension.<br />
<br />
I've been here before. I've watched DQ come close to death and fight her way back, but this was so different on so many levels. The emotional turmoil we faced this past month was nothing short of torture. And even the Mad Scientist wouldn't argue that I was being overly dramatic in this case.<br />
<br />
I would be lying if I said I don't have a little PTSD from watching DQ in such a downward spiral.<br />
<br />
Last night, she screamed out over the monitor and I about had a meltdown because I couldn't believe it was beginning again. Because my emotions are still so exposed, so raw, when I heard that
single scream, I couldn't sleep. I just laid there waiting for the other
shoe to drop. Instead, it turned out that we forgot to put an underjam on last night and DQ's bed got wet. Of course, she sleeps so hard that she didn't wake and realize the issue until morning. <br />
<br />
You'd think my disposition would cheer with the holidays coming. But not even that can take this pain and fear away.<br />
<br />
As of two weeks ago, neither kid believes in Santa or magic. I've tried hard to let them hold onto some sort of wonderment, but none of it is the same. The excitement is not quite palpable. Everything is less fun and more routine. The holiday vibe has been lost. And that is so disappointing. How can a six-year-old not believe in magic?!? And I was the one who had to take it away from her so that she would understand why Santa would not magic her healthy. The whole situation is devastating.<br />
<br />
Couple the loss of magic with the month we've just had, I can't help but wonder if this will be our last Christmas. <br />
<br />
Is it any wonder why I'm constantly muttering "F*CK" under my breath?<br />
<br />
<br />Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-8988524040957212858.post-74916446938840749162014-10-16T18:52:00.000-04:002014-11-10T12:23:16.002-05:00"Inclusion"Since the Dancing Queen was very little, she hasn't quite belonged. I wrote here years ago how she was treated like a doll by the bigger preschoolers (many younger than her, but bigger). The practice has continued through the years, but the divide by DQ and her agemates continues to grow. She has friends in her class, but there are definitely areas where she lags behind and it makes her seem so much younger.<br />
<br />
DQ reads and writes way better than TRex did at the end of first grade, let alone the beginning where she is now. She is doing remarkably well with academics. It is socially where she falls terribly behind.<br />
<br />
We've put her in dance class and girl scouts to help her interact socially with other first graders. Unfortunately, she has to be in a special needs dance class because the "regular" class for 6 year olds will not accommodate her need to rest or slow down. So, she is with a bunch of older kids, teens, and a smattering of little girls who are all cognitively below her and, socially, just as far behind, if not further. This does not help, but DQ gets to dance.<br />
<br />
Girl scouts is a bunch of girls her own age and in her class. Unfortunately, instead of helping her belong, much of the time, DQ is simply made to feel out of place. Girl scouts simply provides her with lots of opportunities to watch the other kids do things that she cannot do or must do in an altered fashion. DQ has trouble with fine motor coordination as a result of her 22q deletion syndrome, so when the girls complete projects like rubberband bracelets, DQ cannot do so on her own. When the girls simply run around and be little girls, DQ cannot join but for a minute because of her heart failure, so she is left to watch as they have fun with out her. For trips, DQ needs her wheelchair. Any activity involving food (which activities don't involve food?) and there is not even an attempt to include DQ because it is too difficult to do gluten free. (Don't even get me started on this--I can't send tree nuts for TRex to eat on his own, but when the class parties come and there are communal treats, they don't have to accommodate DQ because it's too hard! How much bullshit is that!!!!!!!!!!!!!!!)<br />
<br />
So during girl scout meetings and events, DQ must watch a room full of girls just who are supposed to be doing things <i><b>with</b></i> her, exclude her. DQ is left frustrated and angry. She lashes out. Who can blame her?!? But that segregates her all the more.<br />
<br />
I use these times to help her understand that not everyone is the same. These are learning moments for her to accept her differences; to understand that she may not be able to do everything the same way, but she can still participate. These are the same lessons DQ learns in school and everywhere else she goes. There is not a day that goes by that we don't have to teach DQ that sometimes she will be left out.<br />
<br />
But today, as the girl scouts chose to attend a play together at the time they are serving a lunch that DQ cannot eat (rather than a different showing that would not cause DQ to be singled out AGAIN), I wondered: When is it the time to teach the <i><b>other kids </b></i>to think of DQ's feelings? When is it the time to say: this might require a little more thought, but we'll bring gluten free snacks so that everyone can belong? Why should my daughter be the only one who has to change or has to learn? Isn't one of the main purposes of inclusion to teach the rest of the world that disabled persons are people too and that they matter? DQ works harder than the rest of kids to simply breathe! Why can't they eat freaking popcorn for snack ONCE! When the kids are running around for ten minutes like chickens with their heads cut off (and I'm not supposed to be in the room), can't the leaders suggest they play a game that everyone can do? And if I'm not allowed to assist, are you going to make sure that the activities are able to be performed by all of the girls or should the girl scouts change their requirements to specifically exclude children with fine motor delays?!?!?<br />
<br />
I guess I should be grateful that the girl scouts allow DQ to tag along and pretend like she belongs since the dance studio won't even do that. But I'm not grateful. I'm angry and I'm sad. I would pull her out if she didn't ask to stay. Unfortunately, she doesn't know any better. Nobody outside of our family has treated her like a regular kid. She doesn't know what it's like to have the girls actually play with her instead of at her or using her as the toy. This is the only way she has ever belonged and it feels normal to her. But, for me, I feel like they are trying to force her out. They don't want to change, so they will make it so uncomfortable for her that eventually, she'll give up and they won't have to think about the disabled child. And frankly, I'm so exhausted that I can't fight this fight. They don't want to accommodate, so I'll keep teaching DQ. She will be a good person. As for all of those girls whose moms think they are so great because they treat DQ like a doll, those girls are losing the opportunity for real growth. It is a shame because if they were just guided, they'd do it easily. But their parents are too blind to guide and I have too many battles on too many fronts to deal with this one.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-8988524040957212858.post-55685338120609395622014-09-09T20:36:00.000-04:002014-09-09T21:52:42.970-04:00Scattered GriefThere is a catch in the back of my throat; my chest seizes up; I have difficulty breathing; then the tears well so big and fat. I try to hold them in, but I can't. I am balling uncontrollably in my office, at the grocery store, in my car. There is every reason and no reason whatsoever for my walls crumbling down.<br />
<br />
At the end of summer, I came clean on DQ's carepage about her starting morphine and having to make funeral plans. At least I thought I was coming clean. That WAS the plan. So many times, the stages we go through with the Dancing Queen are not real until I post it to her carepage and just as many times, I have held back when posting there. This time, I purposefully put more out there because I hurt so much more. It has been utterly exhausting to try and be up beat for everybody else. Yet, when I posted, I only put a fraction of the pain I felt that I needed to write that day, so I didn't really come clean.<br />
<br />
And each day, it hurts all the more. Putting it out there didn't help like it normally does. It didn't cement my feelings nor give me insight like I have become accustomed. Instead, I am overtaken by waves grief, made more acute when I am pointedly asked how I am doing because the public now *knows* life is so much harder than I had let on most of the summer.<br />
<br />
But what am I supposed to say to the random person who I have never really talked to before? I respond with my pat answer: "I am doing as well as can be expected", but on the inside, I'm falling apart. I posted to the carepage so I wouldn't have to explain myself to the outer rings of my social sphere. Instead, I have to explain myself more often in a way that sucks. Just sucks. <br />
<br />
I know life is only going to get harder and harder with each passing day. How will I survive? I'm not sure any more. I've only made it this far because I had no other choice, but I may not have the energy to continue.<br />
<br />
I am so tired.<br />
<br />
And when I sleep, my dreams are riddled with nightmares in which some evil has stolen my girl from me. I spend my nights searching and searching for her all by myself because nobody will help. I can never find her though.<br />
<br />
When her cries of terror rip through the silence of the night, waking me instantly, I know that she is having the same exact dream as me. She always does--some evil steals her away, leaving her all alone. How can I make it better for her when it won't be?<br />
<br />
And what about TRex? He hides; he won't talk; he won't engage. Are we losing him forever? How can I bring him back before it is too late when he always pushes away, not wanting to burden us?<br />
<br />
How has life changed so much?<br />
<br />Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-8988524040957212858.post-16348203466894984082014-08-13T18:37:00.000-04:002014-08-14T09:10:46.403-04:00FailureThe Dancing Queen continues to suffer. Her pain is at its worst in the morning. She vomits at least once a week. We have added so many meds to help. Some seem to be making things slightly better. She is less swollen these days, but her pain continues without abatement. And her doctors have given up finding an answer and have no other suggestions for help.<br />
<br />
This morning, as she cried in pain, writhing on the floor after vomiting, I scooped her up and held her close. I begged her to tell me she knew I was doing all that I could to ease the pain. She complied.<br />
<br />
I whispered in her ear that I wouldn't stop searching for an answer until I could find her some relief. She said: "I know, mommy." Her voice was filled with such resignation, such wisdom. She knows I will probably not find a solution. And, in that, I have failed.<br />
<br />
I realize that it is not my fault that she is in pain. I know that she doesn't blame me. But if I can't keep her alive, I ought to be able to keep the pain away. And I can't.<br />
<br />
Isn't one of the main points of hospice to ease the pain of the dieing? Why is it that my dieing daughter is in pain every single day of her life? Not a little pain, but a lot of pain.<br />
<br />
And she's still not eating well. We've lessened the nausea through regular doses of zofran, but she fills up within a couple bites of food.<br />
<br />
Of course, I've done lots of research to try to find some answers since the doctors seem to be of little help. The one thing all my searches return me to is "<a href="http://www.patient.co.uk/doctor/palliative-care-of-heart-failure" target="_blank">Palliative Care of Heart Failure</a>", written by a group U.K. doctors. Much like most things I've read, the guide states that eventually heart failure leads to nausea and vomiting and less desire to eat. But this guide also provides a suggested aid:<br />
<blockquote class="tr_bq">
Maintaining adequate nutrition is important and difficult. Small,
frequent, easily digested and appetising meals are required. Alcohol can
be a very useful means of improving appetite, taking in calories, and
improving mood and general self-esteem.</blockquote>
Obviously, the guide is written for adults and giving alcohol to my six-year-old would not only be frowned upon, but illegal. So, I'm left with small, frequent, easily digested, and appetizing meals. Give me a break! Easily digested and appetizing don't really go together. The guide's statement that "maintaining adequate nutrition is important and difficult" is a ridiculous understatement and a laugh. F*** YOU HEART FAILURE! F*** YOU!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8988524040957212858.post-57884572639219258242014-07-23T19:45:00.000-04:002014-07-24T09:34:27.666-04:00The ScreamWhen the Dancing Queen was in the hospital during her first (or perhaps it was the second) round of her boxing match with pulmonary hypertension, she developed pneumonia following a cath. She was in the hospital for at least ten days.<br />
<br />
One evening, one of my parents came to sit with DQ as she watched "Cars" for the billionth time (or was it "Signing Time"?) so I could grab some food and pee (DQ would not let me leave her eyesight). That night, I decided to grab some dinner and went to the waiting area to be out of the room that had been my prison for quite some time (admittedly, DQ was more of a prisoner than myself). While I was there, I engaged in a wonderful, if not sad, conversation with two other heart moms.<br />
<br />
The conversation was wonderful because these moms understood me in a way that most other people can never relate and will never relate. The conversation was sad because it is always sad to be discussing the horrors of children fighting battles against defective hearts and lungs.<br />
<br />
Today, I don't remember specifics about what we discussed, but I do know that we each recounted our girls' stories (all of the moms' CHDers were girls). I clearly remember talking about our girls. It was clear how much we needed our girls and how much we loved them and would do for them. After an hour, I had to return to DQ so my mom or dad (whomever was there) could head home for the night.<br />
<br />
I sat in DQ's hospital room that night thinking about the other moms and the relationships I had with them and all other heart moms. It is a special relationship, something that cannot really be understood until you are in our shoes (shoes none of us would ever want any of you to walk in). And I was so happy to be able to sit down with other people in a room and not have to explain the basics of being a heart mom. They just knew. I reveled in how nice it was to have this instant camaraderie and connection. I looked forward to other "dinners" in the waiting room.<br />
<br />
Suddenly, my reflective moment was shattered by the most heart-wrenching scream I have ever heard. My body tingled just now as I recalled the moment--it was that intense. I knew in an instant what the noise meant: one of the moms I had just talked to, one of the moms who had told me of how hard she and her daughter had fought to be here, had lost her daughter. The little girl had died.<br />
<br />
I wanted to run to my fellow heart mom, to hold her, to absorb some of the pain that enveloped the entire cardiac care unit. But I couldn't leave DQ. She was sleeping at that moment, but had been waking frequently and could not handle being in the hospital room without me or someone else she loved in eyesight. So, instead, I sat in my prison cell, and cried for my new friend's loss.<br />
<br />
The next day, when MS came to switch places with me, I tried to find the mom, but she was gone. <br />
<br />
<br />
To this day, I've not seen the mom again, but I do think of her often. I think of her daughter.<br />
<br />
And as DQ continues her slow decline toward that same fate, I think of them both more. And that scream, . . .<br />
<br />
. . . it haunts me.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8988524040957212858.post-49575931837024336042014-07-08T19:25:00.000-04:002014-07-09T14:51:32.032-04:00Please, eat!I cried today--big fat tears in the kitchen.<br />
<br />
In front of the kids.<br />
<br />
I don't hide my emotions from them, but I do try to keep it together normally.<br />
<br />
Today, though, it was too much.<br />
<br />
The Dancing Queen was complaining of stomach pain. She wasn't touching her food. I tried every trick I have left to get her to eat. I gave her barbeque potato chips for goodness sake! Nothing. She wouldn't eat a thing.<br />
<br />
I begged her, pleaded with her to just eat.<br />
<br />
She has to eat! This has been weeks now without really eating, on top of a lifetime where she has barely eaten enough. She is looking gaunt. She is feeling sick. She will only get worse if she doesn't eat!!!! I can't let her go; she NEEDS food!!!!!!<br />
<br />
<i><b>Dancing Queen, please eat!</b></i> <br />
<br />
"But, Mommy, my tummy hurts too much. I can't eat."<br />
<br />
And then I cried.<br />
<br />
TRex tried to smooth things over. "Mommy, please don't cry. It will be okay." <br />
<br />
<b><i>It won't be okay! If she doesn't eat, she will never get healthy again! </i></b><br />
<br />
I could see that both kids were upset by my emotional outburst and yet there was nothing I could do. I picked DQ up in my arms, held her tight.<br />
<br />
<i>I know you hurt. I know you don't want to eat. But is there something, anything, that sounds good? Please, baby, please.</i><br />
<br />
And she just cried in my arms, "No, Mommy."Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-8988524040957212858.post-18561779731326088362014-07-08T12:52:00.000-04:002014-07-08T12:52:20.392-04:00Magic WandA couple of nights ago, as I laid the Dancing Queen to sleep, I gave her a good dream as I always do to try to keep her happy at bed time and push the nightmares away. That night's dream involved two of her favorite things--rainbow wands and being <a href="http://disney.wikia.com/wiki/Elsa_the_Snow_Queen" target="_blank">Elsa</a> . After she and I kissed the dream, filled it with love, and smooshed it into her head for safekeeping, she turned to me and said: "Mommy, I wish I had a magic wand that could give me powers like Elsa and make rainbows too!"<br />
<br />
<i>You can dream about having magic powers, honey, but I don't know how to make magic and I don't know anyone who can.</i><br />
<br />
"<a href="http://funambulismforbeginners.blogspot.com/2011/02/cast-of-characters.html" target="_blank">The Chef </a>can, Mommy!"<br />
<br />
<i>You think the Chef can make a magic wand?</i><br />
<br />
"I know he can, Mommy! He makes potions all of the time and magic wands are similar."<br />
<br />
<i>Well then, the next time you see the Chef, you'll have to ask him to make you a wand.</i><br />
<br />
"Will you do it, Mommy?"<br />
<br />
<i>No, honey. With something this important, I really think you need to ask him yourself.</i><br />
<br />
"Okay, Mommy. I will ask the Chef to make a rainbow wand that makes ice and snow and rainbows."<br />
<br />
<i>You do that, sweety. Good night. I love you and will see you in the morning.</i><br />
<br />
I totally thought that she would forget about the wand by morning. She comes up with ideas like this all of the time and forgets about them fairly quickly. However, the magic wand idea did not fade. Rather, it grew.<br />
<br />
As of last night, the Dancing Queen's wand that will be made by the Chef had grown in power. She was certain it would turn her brother into <a href="http://www.cuttherope.net/" target="_blank">Om Nom from Cut the Rope</a>. She thought that was hilarious. The wand was going to take her places and get her ice cream and houses made of candy. She couldn't wait to see the Chef again to ask him.<br />
<br />
As the extravagance in wishing grew, I reminded her that magic is not real and that the Chef may not be able to make her a wand. She was not deterred: "Don't worry, Mommy. I know the Chef can do it."<br />
<br />
This morning, DQ found her own non-magical rainbow wand left over from her rainbow birthday party. So as not to tax the Chef too much, she decided she could use that wand and all the Chef would have to do is create magic dust for it. When I asked how she knew the Chef could make magic dust, she quickly responded: "Mommy, he makes potions all of the time. What do you think magic dust is!" How could I argue with that logic?<br />
<br />
At breakfast though, the magic wand became ever more important. The Dancing Queen was in pain again. She could not eat because the pain was too great (this is a very common occurrence--we're lucky if we can get her to consumer 40 calories at breakfast). As DQ laid her head on the kitchen table, she stated matter-of-factly that the first thing she will wish for when the Chef makes her magic dust for her wand is no more tummy aches. TRex quickly jumped in and said he was going to wish for DQ's heart to no longer be broken. The children were so sincere and wanted this so much. We had moved beyond rainbows, houses made of candy, and video games.<br />
<br />
<i>I wish you didn't have pain either DQ. I wish your heart wasn't broken. But you have to understand that the Chef is probably not going to be able to make you magic dust. And even if he does, the dust may not help your belly or your heart.</i><br />
<br />
"No, Mommy. The Chef can do it! I know he can!"<br />
<br />
<i>Please promise me DQ that you won't get angry with the Chef if he can't make you the magic dust that you want. I have no doubt he will try, but some things are very hard to do, even for the Chef.</i><br />
<br />
"Mommy, the Chef <i><b>CAN</b></i> make me magic dust, but if it doesn't work the way I want it, I won't get angry."<br />
<br />
<i>Thank you, DQ. Thank you.</i>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8988524040957212858.post-23296062497284728232014-07-06T20:01:00.001-04:002014-07-07T08:51:44.418-04:00Feeling BadI am so ready to move beyond this holiday, this "independence" day. I have felt nothing but trapped this weekend; trapped in a horror movie, playing a key role and watching it all at the same time.<br />
<br />
We started our weekend at an unplanned visit to the cardiologist. The Dancing Queen has not felt well for months, so it was time to be seen. The doctor found no change in the heart function, but no explanation for increased symptoms. While the cardiologist basically told us everything she has said before, this appointment was very different.<br />
<br />
At this appointment, the cardiologist finally realized that the Dancing Queen is not a baby any more. I could see it in the doctor's eyes and in her demeanor. She actually saw what we see everyday--a six year old who is surpassed in size by three year olds. A six year old, who can read books like nobody's business, who has her own thoughts, fears, opinions, but who eats no more than a toddler. The dichotomy of DQ's face with her missing front teeth and nubs of new ones beginning to show, with her body so small, is jarring in a way. I've had strangers comment that they can't believe she would be losing teeth already. Most people can't see the wise, experienced six year old beyond the little body. Her doctor couldn't either. Until last week. <br />
<br />
I've wanted nothing more than the doctor to see what we see--to know that DQ is big and wants to be big, but her heart and lungs won't let her. I've fought with the doc on this. She wouldn't approve a wheelchair for DQ because she said DQ could use a stroller, but DQ didn't want to be a baby anymore and the doc couldn't see that! Yet, on Thursday, when the doc finally saw that DQ is so incredibly small compared to where she should be, she saw that DQ has grown in height, but stayed the same weight, and just looks gaunt, it made everything all the more real for me, especially after seeing the concern I have mirrored in the doctor's eyes.<br />
<br />
We left the appointment with new medications for the Dancing Queen. They are supposed to help DQ's heart function and lessen her symptoms, so maybe she could feel better. Unfortunately, the meds haven't stood up to fireworks and fun. DQ is feeling worse than ever (when not suffering from a bug). And it has her afraid, so very afraid of being alone when she dies.<br />
<br />
I'm not sure how to calm her any more. We remind her that love never dies. We remind her that we are with her always. We hold her when she cries. But at the end of the day, my baby is afraid to go to sleep because she doesn't want to die alone. We even gave her an extra dose of Valium last night. That didn't help. Tonight, she is sleeping with TRex. But what about tomorrow? How can I calm her fears when I can't calm my own? Unknownnoreply@blogger.com3