Unhappy 4th

I'm having lots of trouble concentrating today. It's 4th of July weekend, a weekend beloved by my Dancing Queen and filled with so many memories: my girl sitting by a beach; my girl take naps with everyone in the family so she would be able to stay up for the fireworks; my girl beaming with delight at the explosions of color; my girl dancing on the side of a hill to horrible music played by a rock tribute band before a fireworks event; my girl in a swimming pool; my girl eating ice cream; my girl so tired her last 4th of July that she couldn't get out of bed, but the family gathered around her; my girl littering the driveway with pop its and using a broom to clean them all up so she could use more; my girl ripping off her oxygen to use sparklers; my girl conspiring with her uncle about buying more fireworks; my girl riding on a pontoon across a lake; and my girl declaring each 4th the best day ever. All of these memories and more swirl through my head with love and heartache as I miss my beautiful daughter and how much she loved the 4th of July. She loved spending time with family, which we always did. One year is was literally yard work and a picnic, but we were together. 

We have not set plans this year, except if nothing gets planned, we're going to gather at our house. And I'm not going to work, but it will not be the same. The Dancing Queen made the holiday special. She made all of the holidays special because she loved them all. Because she loved them all, we worked to make them special. Now nobody else really cares, so there is no need to make them special and each holiday just becomes another day. Worse, they become sad reminders of when we had it good or when the magic was alive. 

Death doesn't just take the life of our loved one. It takes away the moments and the special occasions and everything that was shared. It takes away what could be. I am an empty shell of who I used to be. I don't like it. I don't have anywhere to put my lost creativity and my lost passions. That part of me seems to have died right along side the Dancing Queen. I am working on trying to revive it. I don't know if I can. The Dancing Queen not approve. She would tell me I had to find a way back to my creativity and bring the magic back, but she was my spark. I don't know how to find it without her.

Letting It Go

I started this blog so many lifetimes ago. I'm not sure it can be called funambulism for beginners any longer. I surely am no beginner. I no longer have small children and I mastered funambulism of life long, long ago.

And who writes blogs any longer? When this was started, I didn't know about social media and blogging was the way to connect to the world outside my living room. 

I no longer crave that connection to other adults that was missing because my kids were small, one was sick, and I felt siloed in a world of work and child care. But now, in a world full of instant online connection, I find I'm missing the catharsis of writing down my thoughts and feelings and letting it go into the ether. I don't care if I connect with others. I just need to let it go.

Our amazing Dancing Queen died ten months ago yesterday. There is a not a waking moment since then when she is not with me. I may be taking a deposition, but she is sitting in the room with me, wondering why I am worried about these boring corporate things.

I only read and listen to stories I think she would love.

I feel like Taylor Swift's "Tortured Poets Department" was written for me because it is just so filled with sadness and anger and sung by my girl's favorite. Even though the songs are about hearts broken in romantic entanglements (not due death), I listen to it constantly, even when no music is playing.

I'm drawn to all of things that the Dancing Queen loved. I came inches away from buying a sweater today simply because it had a fox on it. My girl loved foxes. I'm not sure I'd ever wear the sweater, but I want it because my girl would love it. It's still in my cart, waiting for me to check out.

Yet, I cannot read her stories. The Dancing Queen was a writer. She has literally hundreds of stories or parts of stories saved in her google drive. I promised I would help publish those for her after she was gone, but I've only done a handful so far because it is too difficult to read her words. I feel horrible that I can't do it yet. I know I will get there, but it is so hard to even fathom having the ability to read them without her nearby to share the experience. Maybe putting this out into the world will help me forgive myself for grief postponing promises. I know my girl wouldn't fault me.

On top of all that, TRex is away at college now. We have an empty nest. There no longer is anything to balance. All I can do is hope that I parented him well enough to make wise choices now that he's an adult and be humble enough to realize when he needs help if he didn't make the wise choice or the choice is unclear. Sitting back and letting him make those choices is so hard. Not knowing what he is doing, who he is meeting, if he is adjusting, is so hard. All of it makes me crazy nostalgic for those harried days when he was little, telling me about pachycephalosaurus, reciting movies at night, or reading "Horton Hatches an Egg" for the ten gazillionth time.

I miss my boy. 

I miss my girl.

"Normal"

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. 

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.

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.

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.

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. 

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.

Funeral Planning

The 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.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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?

:(

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.

No, she didn't tell me all of this, but I knew it.

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.

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.

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.

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.

How do I know the right answer???

What am I supposed to do!!!!

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!

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.

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.

I just want her to try and stop giving up. Please stop hurting yourself, baby girl.

Human

I 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.

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. 

I learned to live with the pain and abandonment. I found new support systems. I moved on.

Or so I thought.

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.

I find myself wondering why people are so cruel. Why I deserve to be treated badly. What I did to be ostracized. 

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.

I am human.

Fuck you all :(

Fading Away

She is fading away slowly. It is agony to watch.

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.

And that is just me.

She is in pain.

She is slow.

She does not fight as much when she is left out. She doesn't have it left.

That makes everything all the worse for me.

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.

We are getting more help, but we are drowning. All MS and I do is work. There is no down time. EVER.

I am exhausted physically, mentally, and in every way possible.

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.

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.

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.

Pain

The 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.

The Dancing Queen is declining. There is no getting around it any longer. She is nearing the end.

I can't even believe I wrote "the end".

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.

The decline is palpable. It hurts to watch. To feel. To think. To hold.

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.

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.

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.

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.

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).

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.

What a week!

I can't even believe what a shitty week this has been.

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.

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.

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!

And the guilt hit. If I had researched more two years ago,  could I have ended her pain earlier?

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.

We got to try it out as soon as we walked in the door as DQ was fighting with my mom.

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.

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.

Needless to say, DQ did not take the thought of losing her only comfort item in this cruel world very well. 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.

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!

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!

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. But as you already know, it broke me.  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!!!

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.

broken

You get bad news often enough, you prep for it. You're hardened. Start thinking: "Bring it on; I can handle anything."

But I can't.

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.

I don't know if everything is wrong or nothing.

DQ wore a holter monitor last week for 48 hours. It wasn't the first time she's done this. Hopefully, it won't be the last.

The cardiologist called yesterday. Three years ago when DQ did this test, she had 261 PACs--premature artial contractions. 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.

Three years ago, DQ had no PVCs--premature ventricular contractions. Last week, she had 51. Again, not that big of a deal.

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.

But, I think it all.

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.

But what if it doesn't?

It hurts to think what could happen and I can't stop myself from thinking.

Tears have been flowing all day.

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.

This may be a blip, but it could be so much worse. And I'm broken.

Wordless Wednesday: Morning Routine

Friendships

Good morning, sweet girl! How did you sleep?

"Good, Mommy."

Are you ready for the day?

"Yes, I guess."

What's wrong DQ?

"My best friend ("BF") plays with lot of other kids now and won't play with me or eat lunch with me any more."

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. 

"But I miss her and I want to play with BF."

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: ""It happens sometimes. Friends come in and out of our lives, like busboys in a restaurant."

Then I had to explain what a busboy is and the Dancing Queen asked: "But why do friends go?"

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.

"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."

Oh. 

"Why would he say BF can't play with me any more?"

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.

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.  

"Why is that, mommy?"

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.

"I don't understand, Mommy."

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?

"Yes. They shot Martin Luther King and killed people in Paris because they were different."

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 . . . 

"We may be different on the outside, but we're all the same on the inside."

Exactly.  Think about your class.  Does everybody look the same? Do they all have the same skin color? Wear the same clothes?

"No, but Mommy, if they looked inside me, they'd see I'm different."

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.

"But Mommy, why would BF's dad not want her to play with me?"

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?

"Yeah! The Indian dance she does is so fun and different."

But you two are similar on the inside, right?

"Yeah. We both laugh at the same things."

BF's dad probably wants that for her too.

"I guess."

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.

After hugging my sweet seven-year-old for a very long time, she slowly walked away to brush her teeth.

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.

I've been dealing with DQ and friends (or lack of friends) for years.  She's never quite fit with her agemates, 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. 

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.

Then, this morning, learning that BF's dad doesn't want BF to be best friends with DQ any longer, it all came together.

BUT WHY??????

If DQ has been mean to BF, shouldn't I have been told?

DQ would have told me if they had had a fight. She always tells on herself.

If DQ and BF were transitioning apart, why would BF be forbidden to play with DQ? Let the friendship take its natural course. 

The only reason for forced segregation of the girls, at least in my head, 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.

But . . . REALLY? 

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.

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.

Maybe I'm all wrong. But if 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.

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.

Running Away

Yesterday was hard, so very hard.

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.

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.

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.

I asked her if she was in pain (I knew she had been for days).

She said: "Yes, Mommy, and I don't feel good.  I don't know why, but I don't feel good."

I know, honey.  Do you think you might be angry because you are feeling worse?

"I don't know, Mommy. I don't know why I'm angry."

That's okay, DQ. You don't have to know why you are angry. 

I know sometimes I get angry or irritable when I don't feel well.

"Really, Mommy?"

Yes, but it does not give me the right to treat people badly.

In her most downtrodden voice, she obliged me by saying: "I know. I have to be nice."

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.

She thought for a long time, snuggled deep into my arms.

"Mommy, sometimes I feel like running away."

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.

"But, Mommy, why does life have to be so hard?"

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 love you, Mommy. You are the best Mommy in the world."

I love you too, baby. You are the best daughter in the world.

Bedtime Routine

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.

DQ lays there while MS brushes her teeth (doctors orders to get her to behave better at the dentist and get better clean).

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.

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.

Pinkalicious is still one of her all-time favorites.  Mickey 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.

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.

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.

 

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.

 Last night, I laid in my bed, watching her be carried away and she asked "Are you coming, Mommy?"

Of course, baby. I'll be there in a minute.

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.

My heart literally ached. My body shook. HOW CAN THIS BE HAPPENING?

Too many nights these days, she's already too tired to read. Or we have to carry her to the bed.

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.

Waves of Grief

The 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.

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.

Why?

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.

Emergency is Over

For 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."

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.

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.

The best part is that we are doing this together.  We are no longer alone in our grief.

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.

What has been surprising though is how much I've learned about myself as well.

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.

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 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 . . .

Top Ten Things To Do For Parents of Critically Ill Children

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.

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.

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.

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.

1. Don't ignore that my child has a terminal illness.  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!)
   
   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.
2. Ask questions.  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.
3. Never ever start a sentence with: "at least". 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!
4. Remember it doesn't stop.  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. 
5. Help.  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.
6. Food is always welcome!  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.
7. Be there.  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.
8. Go to the hospital. 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).
9. Remember the siblings. 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.
10. Never say "everything will be fine".  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.  

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?

National Believe Day 2014

Once again, it's National Believe Day, where all letters to Santa dropped off at Macy's raises $2 for Make-A-Wish.  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.

Three years ago on National Believe Day, we were preparing for the Dancing Queen's wish trip.  Her trip was magical, even though emotionally draining. 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.

While DQ no longer believes in magic and she knows Santa is not a real person, 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.

The Choice

Ever 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.

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.

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.

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.

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!

But there was more.

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.

Having to choose has tormented me in a way no other decision has before.

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.

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?

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.

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.

Lost

This 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.

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.

I would be lying if I said I don't have a little PTSD from watching DQ in such a downward spiral.

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.

You'd think my disposition would cheer with the holidays coming. But not even that can take this pain and fear away.

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.

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.

Is it any wonder why I'm constantly muttering "F*CK" under my breath?