Saturday, December 8, 2012
The Dancing Queen easily gets to 137 at many times during the day. Her resting heart rate while awake hovers around 115. In a deep, restful sleep, she jumps between lows 80s and high 90s (and it can go higher if she compresses her good lung by laying on that side, which she rarely does). Her little body is constantly running.
How long can someone continuously run before their heart says "that's enough"?
Stress test came back completely fine. My doctor was being overly protective of me because I get intense stomach aches when I don't eat now that I've removed gluten from my diet. Even though we were both certain my pains were not heart related, we couldn't risk it.
Tuesday, November 13, 2012
The Dancing Queen looks so sick to me. And yet, I'm supposed to be happy with how she is doing now.
I'm not happy though. I want her to be fixed! I want her to not worry about fatiguing from swinging 10 minutes by herself on the big girl swing. I want her to look like a little girl instead of a tired old woman in a teeny, tiny body.
This sucks! It just sucks to know my daughter is steadily declining, so slowly that nobody else notices. They make me feel as if I am wrong to notice the little things. She is not improving.
She saw her pulmonologist yesterday. He was happy to see her smile; to see her play; to know the joy that is my beautiful daughter. But did he do anything to help her stop desatting as she sleeps? Did he give us a plan to make her healthy?
Yes, we've changed a med and it may help her breathe easier, but nothing was changed. Not really. Unless she gets worse, nothing will change.
And I'm not happy about that.
Friday, October 19, 2012
Wednesday, October 3, 2012
And no matter how much I am reminded that fall is here . . . now, I'm not feeling it this year. I don't know. It just doesn't feel real. None of it does. Each day, I go through the motions, but don't feel connected to any of it. Maybe its being in a new house and doing a new job. Maybe its the unease of DQ's constant illness without answer. Maybe its the cough medicine I've been guzzling for the last week.
No matter what it is, I'm not connected to this fall and maybe not even connected to my life right now. Is that possible? I still do it all. I still hug my babies close and grab my camera so I don't forget the moments. I still work, drive home every night, pay the bills. But I'm not here.
Someone ought to pinch me. Maybe then I'll wake out of this fog.
Saturday, September 29, 2012
Thursday night, I got home after the kids were in bed. I quickly kissed TRex as he was almost asleep. Then I went into DQ's room. She was awake because she had gotten a splinter "from wood" that day and wanted it out. She asked me to do it even though she knew I'd have to use a needle.
So I grabbed a needle, tweezers, alcohol wipes, gauze, bandages, and the Mad Scientist. We asked her if she was sure and she said yes. So we tried to extricate the wood.
DQ screamed bloody murder. TRex woke up befuddled and ran into her room, worried, watching, and scared. We continued for all of two minutes before we realized how futile the exercise was and stopped, splinter still embedded in DQ's finger.
DQ fell fast asleep, but TRex was traumatized. We put him to bed, but he laid there crying, very upset at the thought that we would use a needle on his sister. I explained the necessity and then he understood. Unfortunately, he was still transfixed on his sister.
I tried to get TRex thinking about happy things. I told him that his cousins had signed up to walk with us at the Congenital Heart Walk that day and reminded him of the fun we will have. That made him happy, but didn't stop his worry.
I told him that he had received $225 of donations for the heart walk that day. He liked that too, but was still worried about his sister.
I offered to take the worries myself, but he wouldn't dare make mommy worry. So, we found a triceratops and gave all of his worries to the dinosaur. He was covered in armour, so could definitely take the pressure!
TRex felt better, so I went to leave the room. As I closed the door, I heard him crying again. I went back and he said he was still worried about his sister. I exclaimed "But I thought we gave those worries to the triceratops?"
But mommy, these are new worries.
I had TRex give those worries to the dinosaur, then I suggested he replace them with good thoughts; thoughts of playing with his cousins.
He wanted a better thought. He decided that he would dream of raising the most money ever for the heart walk. He became animated and shouted, "If we raise more than a million dollars we could do so much research! We could help DQ!!"
TRex went to bed happy, dreaming of all the money he can raise for congenital heart defect research. And first thing Friday morning, he came bounding out of his bedroom, piggy bank in hand "Mommy, I want to donate ALL of my money to the heart walk."
Maybe, just maybe, we have found a way to help TRex with his worries. Perhaps being proactive in helping find a "cure" for his sister will make TRex worry a little less.
If you'd like to help TRex reach his goal of raising the most money ever for CHD research, here is the link to his fundraising page: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1028344&supId=367339350.
Thursday, September 27, 2012
In the mix of that, he met a "best friend" this summer who told TRex all about God and how you will live forever if you just believe. TRex (and DQ after learning from her brother) have begged me to allow them to believe in God so that they can live forever. "Mommy, please, please let us believe in God. I don't want to die."
I've lost track of the number of times that I've explained that even people who believe in God die and that they can believe whatever they want, but mommy and daddy don't believe in any god. I've told them to ask whatever questions they have, but they don't think I can answer. So, I tell them to talk with their aunt, but they don't want to.
And so my poor little boy is piecing together life and death and religion all at the same time. The other night, after a discussion of hearts wearing out, TRex decided if he dies before me, he's going to let me know if there is a God. And then he said "And if there is no God, I don't know what I'm going to do." Of course, I explained to him that no matter if there is a God or not, he was going to live a good life, full of love, spent doing good work with the people that matter. He seemed to accept that, but he continues to worry.
Considering I've been having these conversations repeatedly over the last several weeks, I wanted to be sure TRex's worries weren't overtaking his schoolwork. So, Tuesday morning, I met with TRex's new principal and his new teacher. We were there to discuss TRex's anxiety and how it affects school and to develop a plan for him when his worries over his sister became a distraction.
Wonderfully, they told me that TRex is adjusting extremely well and fitting in with the other kids. He is showing none of the signs he has in the past of worrying over his sister at school. But, they were concerned that he is bringing those concerns home to me. He is obviously pushing the worries out of his head in school (a very good distraction), but he still needs to get them out when he feels safe. He feels safe with me. Me.
Then they hit me. They think TRex needs a counselor so he can give his concerns to someone other than me. OTHER THAN ME!
Alarm bells rang out. My mind was racing: How could they want me to pay someone to take my place? Shouldn't they be happy that my son is comfortable enough to tell me everything?!? Why would they want me to break that special bond between us???? He is my son!!!!
Luckily, I listened to what they said nonetheless. They love that TRex and I have an open dialogue and that he feels comfortable confiding, but experience tells them that TRex will stop coming to me at some point, probably when he needs it most. When I become too overwhelmed or concerned, TRex may hide his feelings to protect me and then he will be all alone. We need to get him comfortable with someone now so that should something happen down the line, TRex will be covered.
I should be grateful that TRex is in a school that cares enough to look out for him now and down the line (his principal offered to speak with him whenever he felt sad or confused or needed reassurance because of his sister). And I will be grateful someday. But, right now, I don't want to think about the days when my sweet, sweet boy doesn't want to confide in me. I know they are coming, but I'm not ready to let go.
Monday, September 17, 2012
I haven't thought of Kayme for years. But then, the Dancing Queen became enamored with the Pinkalicious books. And in "Goldilicious", we meet Pinkalicous's imaginary unicorn. Last night, after reading "Goldilicous" for the billionth time in a week, TRex asked what an imaginary friend was. I explained and he asked if kids had imaginary friends. So I told him about Kayme.
Fast forward to tonight, when read "Goldilicious" again because it was DQ's choice. After the story, TRex asked me why Kayme never came back after her ack attack. I responded that kids grow out of their imaginary friends and when Kayme had her ack attack, I must have outgrown her.
TRex then wanted to know if an ack attack really was a heart attack. I told him truthfully that I didn't remember, but when I was older and was told the stories of Kayme, I suspected it was a heart attack.
He left it at that and went off to bed.
After I tucked in DQ and went to kiss TRex, he asked me why I didn't try to save Kayme from her heart attack. He didn't understand how I could let her go. Why didn't I call my dad to save her? Didn't I want to play with her any more? I tried to explain that imaginary friends don't last forever and I had other real kids to play with.
Then, we got to the meat of the matter. TRex wanted to know why someone wouldn't be saved when they had a heart attack. I had to explain that sometimes there was nothing to be done. He wanted to know exactly how and why a person could have a heart attack.
Then he was silent for a while.
He looked up at me and asked "Mommy, did DQ have a heart attack?"
No, honey, she never had a heart attack.
The relief on his face was palpable. And luckily for me, he never asked the next question.
Something tells me that I won't be so lucky in the near future.
Thursday, September 6, 2012
Such is the nightly routine of my sweet girl. She is always going to dream of playing games in a tent with us and eating whatever suits her fancy that day (unless we read or watched Willy Wonka).
But how often have we played games in a tent?
Recently, not much.
It is 8:30 at night, when I'm sitting at the lonely computer, that all I want to do is play games in a tent. But, I can't. My babies are sleeping (or at least they better be!)
We bought this new house, complete with an office for me to work in. I've taken advantage of it. I've been home at bedtime so much more over the last several months than I had in a very long time. But now I want more.
I want to be able to play games with the kids, not just tuck them in. I want to be in their classrooms, not just hear about their days. I totally understand why being a stay at home mom would rock.
Don't get me wrong. I still love my work. I'm enjoying my new practice area. And we can't afford for me not to work (especially with the new house and an old house that is still in need of a renter--YIKES!)
But, sometimes, I want to play games in a tent with my babies and eat yummy foods, not just dream about it.
Thursday, August 16, 2012
She runs, she plays, she dances. She can't be sick.
But were you really paying attention? She stopped well before the other kids and started talking to you and making you forget she can't keep up. It's called a coping mechanism. She uses them all of the time--even when her physical and occupational therapists are testing her.
She is smart as a whip and will convince you to do something else if she can't keep up physically.
Heart disease is a silent killer.
Pulmonary hypertension is very well disguised.
All of it lethal.
If you don't pay close attention to every detail, you'd miss the decline.
Yes, she is sick. She hides it well. Don't hold it against her.
Wednesday, August 1, 2012
But, I always hold my breath when I have to ask questions like "will it be a problem if my daughter needs to wear a diaper at nap time?" Upon hearing the answer "we're not licensed for that", I try so hard to hold back the tears and not let the person on the other end know they cut me to the core. When I explain that she needs diapers because she sleeps so hard due to the shear exhaustion of standing upright and being a kid with so many physical hurdles to overcome, they sympathize. But . . .
. . . we're not licensed for that.
Potty training has been an ongoing process with the Dancing Queen for years. She wants to be big. She wants to use the potty, but it is just so hard for her. I've talked a lot about DQ's eating problems. Well, those are nothing compared to her potty problems (and the potty problems most likely add to the eating issues).
DQ wears a diaper to bed at night. She hates it. She wakes up every morning and says "Mommy, I think my diaper is dry today. Can I wear underwear to bed tomorrow?" And everyday, I have to tell her "No, honey. The diaper is wet. You take lasix right before bed. It is really hard to hold it all night when you take diuretics." And she sleeps so hard, she never even realizes she pees. I try to let her know that it's okay; we all understand. But, she gets sad every morning nonetheless.
And while DQ wears underwear when awake full time these days, she still has accidents. There have been more weeks this summer that DQ hasn't been permitted to swim on swim day than there has been weeks she can simply because her body doesn't work in the way it should. DQ wasn't born with the muscles that all of the rest of us have. She had surgery as a 3 month old to help, but it's not the same. She faces pain ever single day. And recently, she started to face ridicule as well.
And because using the potty has caused so much torment in her little life, DQ revolts against it, making the process all the worse. She fights us constantly as we remind her to use the potty. "DQ, you took lasix an hour ago, you need to use the potty." And she screams "I DON'T HAVE TO! I JUST WENT!" But, if she doesn't go just in case, there will be an accident. It's not her fault. You try taking the highest dosage of lasix a day for your weight and see how quickly it creeps up on you. We have to remind DQ every 15 minutes to use the potty after lasix. But all she sees is that we remind her and not her brother and not the other kids at school. Why is she the one singled out?
And don't even get me started on the other medicines she has to take and the harsh reality that comes with them. My poor baby feels like she is doing something wrong because the medicines she desperately needs to help ease the pain, present huge obstacles to overcome for most people, let alone someone with the equipment the medicine was designed to work for. DQ wants to be big. She knows what she has to do, but her body betrays her.
Why can't people understand?!? Why don't they help her? Why do I get so angry at times? IT'S NOT HER FAULT!
And, yes, there are times, she does it on purpose. I don't blame her for that either (at least not at this moment). If you were constantly being punished for doing something you couldn't control, wouldn't you do it on purpose every once in a while so that at least there was a reason to be punished?
Monday, July 30, 2012
But, at first, we were told we'd have the house on the 20th. Then we were told it would be later, but they weren't sure when. Then we were told the 29th. All the while, we couldn't make plans to move ourselves.
Finally, last Thursday, the 26th, we were told we'd have the house on Saturday, the 28th. We planned our lives around this. We told the kids when we were getting the keys.
Yet, on the morning on the 28th, the seller called (the seller we were told has been in Hong Kong all summer!). He told us he'd not be out of the house until the 29th, but gave us no time. So, we drove by to ask WHEN. We were told 5:00pm on Sunday. (And I noticed they hadn't cut the grass once in the 10 days after closing, despite the days and days of rain.)
At 11:00 am Sunday morning, the seller call me again and said 5:00 was not going to happen. That he needed another week. Another week! This upcoming weekend is the ONLY weekend we have left to move this summer. He couldn't have another week! If he did, the Mad Scientist and I would both have to take time off of work to move. We can't afford that!!! And besides, the escrow only lasted until Sunday night at 5:00pm!!!! I was furious and scared and sad and furious!!
I called my realtor. I was told my only option was to call a lawyer. Really????
I spent the next several hours researching my choices, calculating damages, and drafting eviction papers. I was prepared to go to the house at 5:00pm, the first set of eviction papers in hand to serve him. But, at 2:00pm, as TRex and I entered the grocery store, my realtor called, asking if I'd be willing to do a final deal, whereby the sellers got an additional 2 days. I said okay as long as I got $175 for each day past the escrow. (The utilities were already in our name!!!!)
So, we made deal between the parking lot and TRex's bathroom break after aisle 5.
Then, as I was literally paying for my groceries, the seller called me again, asking if we'd let him give us the keys at 9:00pm that night. He had called all of his friends and begged them to help him. I said yes!
During dinner, he called again, saying his friends had come he would be done by 9:30pm. He also asked if he could leave the pool table in the basement. (Score one for MS! He wanted that table.)
It seemed as if the house was finally going to be ours 10:00pm Sunday night.
Then, at 9:26pm, the seller called again. He had run out of space in his second storage unit and nothing was open any longer for him to rent. He wasn't going to be out Sunday night.
Luckily, MS was on the phone with him. I was screaming in the background. Yelling that he had better be out by 5:00pm Tuesday night with the money he owes us! But, I could tell from the Mad Scientist's end of the conversation that he had NO INTENTION of finishing. He didn't want to take a day off of work. BUT I WAS GOING TO HAVE TO TAKE TIME OFF OF WORK?!?
Finally, MS handed me the phone. I heard the seller say he needed to rent another storage unit; that he needed another truck. I didn't care. I told him he had until 5:00pm Tuesday to get out with $350 to cover my damages or I would start the eviction process and file a lawsuit for damages (I had calculated at least $3200 in damages if he still wasn't out by next Sunday.) I pulled the lawyer card (which I try never to do). He said he couldn't miss work. I told him I COULDN'T MISS WORK. I told him that I have a house that needs to be empties. That he was messing with my children because they keep thinking their getting a new house and then they don't. I went all crazy on him. But, I left the conversation with the impression that he really didn't care about us and had no intention to pay the money he owes and wasn't going to leave the house by 5:00pm Tuesday.
I sent a long email to my realtor, asking her to impose on the seller's agent how serious I was and that I would feel cheated by everyone involved if the agreement causes me to lose two days in which I could have started the eviction process.
This morning, my realtor took care of business. She and the seller's realtor worked it out to make sure the deal we made on Sunday would go through. I wasn't believing anyone any more, so I spent a lot of time doing legal research, talking to colleagues, and formulating a plan. This seller is a lawyer himself!
I was told not to speak with the seller; that the agents would handle it. I was grateful, ready to be done with it.
Then, about 7:45pm, as MS and I were plating our dinner, my phone rang. I didn't recognize the number, so I didn't pick up. Then MS's phone rang from the same number. It went to voicemail. Sure 'nough. It was the seller. He was going to be out by 9:00pm. Could we come pick up the keys? And we thought "Again! Really? REALLY!?!"
In total, he called us 5 times before we called him back and said MS would be there at 9:30pm to get the keys.
I started writing this post about 45 minutes ago, when MS left the "old" house to get the keys to our forever. I asked my brother-in-law, the Car Guy, to go with him so I could feel safer. And now that the Car Guy lives very close (as of last week), he could do it for me.
Since then, MS has called me. The seller is still packing up the last of the junk and MS is making sure to dot all of the I's and cross all of the T's for his lawyer wife. The sellers are leaving many things more than we planned: a trampoline, a backyard kid's play set, benches. We want to be sure we're not accused of stealing the items.
We still need to get our money for his holding over. We need him to sign the release of escrow funds.
But even after all of that done, after I know my sweet husband is safe and that I have the keys to forever, I don't know if I'll believe it's all true. So much has happened. We've lost this house and got it back again over and over and over. Will life ever feel normal again?
Thursday, July 19, 2012
Lucky for me, that damn gorilla should wander away this afternoon after he realizes we held on and close on our forever home. The trick will be to stop the rain and get our current house rented out and fully move.
I'm learning to work with the wind. I'm taking over the practice area of a colleague moving on to bigger and better things. It is exciting and scary all at once and a career move I relish.
I'm never going to get back on the line though and feel safe until that little bird stops pecking at my fingers. DQ has not been improving since my last post and her episode. I've watched her start to look worse and worse. She is showing more and concerning symptoms daily. Tomorrow, we see the cardiologist; the bird will fly away or start pecking harder.
I guess I'll just have to find a way to put on gloves.
Saturday, June 30, 2012
Last night, the Mad Scientist and Papa drove to New York to help the Editor and Car Guy pack up their house for good and move to Michigan. That left Ma and I with all four kids. So, we had an experiment. The first of what we hope will be many, many slumber parties with all four kids. The night was filled with pizza, popcorn, movies, and lots of fun. The kids did really well. When the last movie ended and lights were out, they all fell asleep without trouble.
This morning, they played together, ate well, and just had fun. It was so wonderful to watch. My heart swelled with love for all of them and how good they are with each other (even if there was some bickering). Little Car Guy, who should really be called the Screen Bandit, was very good about helping the younger kids. And the younger kids look up to him with so much awe and love. My heart was melting, watching it all.
Before it got oppressive outside, we headed to the park. After half an hour/forty-five minutes, Ma was pushing DQ in the swing and the boys were climbing climby things, so I had a couple of minutes to sit and watch some more. I was in my glory and decided to check my email. The one I was waiting for was there: "Yay! They will vacate on July 29." Our realtor was letting me know that our new house will be completely ours on July 29th! I was ecstatic. My world was complete--my sister and her family are moving close to us so our kids can become best friends, the kids were getting along, and our new house was becoming real! I, of course, called the Mad Scientist to share.
As I talked with him, reveling in the news that we will be moving the first weekend of August, I looked at Ma & DQ. They had stopped swinging and were heading to the shade. I hung up with MS and asked what was going on. Ma brought DQ to me. She had a nose bleed, was complaining of stomach pain, and was obviously in distress. She just wanted me to hold her and I did. Her heart was beating so hard. I tried to round up the boys, but they didn't want to leave. I was hanging on by a thread. DQ had only been swinging. She wasn't running! She had been regularly drinking! SHE WAS JUST SWINGING! My emotions were a roller coaster as my baby was turning limp in my arms.
Ma rounded the boys up and explained why we had to leave. The boys started joking that DQ was dieing. And I broke. I knew she wasn't dieing, but hearing out loud the fear that is always lurking in the far reaches of my mind took me over the edge. I sobbed. I tried not to let the boys see me and DQ was so out of it she didn't really know I was doing anything, but I couldn't hold back the tears. I took DQ in my arms, racing toward the car as Ma continued to talk with the boys, tears streaming down my face.
We got to a picnic table next to the car and sat. DQ with her head on my shoulder and tears flowing like a faucet by then. Luckily, by the time the boys got to us, I had calmed down. I got DQ in the car and we decided to go to one of DQ's favorites--Olive Garden--the one restaurant with gluten free food (for me), vegatarian fair (for Screen Bandit and Chef), and stuff everybody likes. Except DQ didn't want to go. She wanted to go home. My baby was passing up basgetti!
Ma took the boys out to eat and I brought DQ in. She just wanted to sleep, but only after trying to vomit. She is now napping, but not well. She cries out in pain every couple of minutes. I'm sure it was the heat, but it was only about 80. And she was just swinging.
I can't stop thinking that she was just swinging.
I hate this. I hate that my daughter can be so happy, doing the thing she loves most in the world one second, and a puddle in my arms the next. I hate that she continues to have nosebleeds for no apparent reason. I hate that she has so little reserves. I hate that life is so unfair to her. I hate that everyone's day gets turned upside down because DQ's body can't handle life. I hate that I can be riding a huge high and that I let DQ's normal life take me down so low. I want to be able to rejoice in the happy that we have and not let the sad parts get me down, but I don't know how. I want my baby to have one day where she can play with the kids and not worry that she could die if we let her play with the kids.
Wednesday, June 20, 2012
When I got up at 6:15, I felt better. I came to decision that since I couldn't do anything about losing the new house and we will be left where we are, I will make the best of it. As I showered, I started thinking about how we could move our washer and dryer so that the laundry room/pantry could be turned into a bedroom for TRex. Is it feasible to turn our half attic into a laundry room? Would there be room for a pantry as well? Would that be a problem when the attic gets 120 degrees or 20?
As the kids ate their breakfast and I finished up packing their schools bags, I noticed a space we usually have full of stuff. That space could be emptied and a small desk would fit so TRex would have a place to do homework. Yes, we'd have a lot of fears to overcome because TRex won't walk there on his own because there are monsters, but we could make it work.
The kids and I discussed how they would continue to share a room, but that I would get the wall decals they had wanted (R2D2 and Mickey Mouse) for their bedroom upstairs instead of their new rooms. That appeased and they started discussing the possibilities that DQ may actually end up with TRex's kindergarten teacher in a year a half. And all seemed okay in their world.
By the time I was driving to work, I was better. I talked to the Mad Scientist. He was on the same page, except he hadn't thought about putting the laundry in the attic. We were moving on.
Then, as MS tried to call our realtor to tell her what had happened, he accidentally dialed the seller's agent. Figuring we had nothing to lose, MS explained the situation. The seller's agent managed to get through to our agent before MS could. From there, negotiations have taken off again, seeing if this can still go through. And just like that, I'm back on my head again, not knowing what is going on.
Thank you all for your kind comments. They have helped so much.
Tuesday, June 19, 2012
We were pre-approved for a mortgage with the understanding that we would rent our home. We were told it would be easy.
We found a home. Fell in love. Put an offer and an earnest money deposit.
The offer was accepted.
We paid for a home inspection. That came back not good.
We searched our sole and decided to go forward with the deal when the sellers wouldn't budge on their requests. We had enough money readily available to cover the down payment and closing costs.
We learned that the problems our inspector found with the house were not what was expected and things could be remedied fairly easily. We were elated, ready to move forward.
We learned that the closing costs were much higher than we had planned. But that was okay. We were willing to pull money out of our 401(k), pay the huge penalty and taxes, because this would allow us time together as a family. This home would allow me to come home at night BEFORE the kids go to bed. I could tuck them in. I could be a mom. Then, I could retire to my office and work a couple more hours each night. Having time with my family was worth possibly having to work years longer. We know there are no guarantees in life. My daughter will probably not be around when I'm 59.5. I want to be with her now. I want to know my son and help him become a good man. I want to see him grow, not just hear about it over the phone. Being with my family while they are here was more important than the money that would be lost in the retirement account.
We decided to move forward with the sale yesterday. We've incurred all kinds of costs for the house.
Today, I learned that I didn't read enough of the information on the 401(k). While there is plenty of money in the account (well more than we need) and it is 100% vested, completely mine, I can't touch it. That money is so well hidden that should the Mad Scientist die tomorrow, leaving me alone with two children, I couldn't pull any of that money out to support us.
All of the money we have paid toward this new house is now gone. Lost to my stupidity. And because of that, we will not be able to get another house. We cannot expand our current house. We are stuck.
Our dream has died. We will stay in this tiny house (another HUGE mistake of mine) for the foreseeable future. My son and my daughter will share a bedroom for who knows how long. I will continue to stay at work past bedtime, only hearing about their day over the phone. We will live amongst piles for want of room to put things away. And the only way to buy a new house? I have to stop investing in my retirement account to save "quickly" for a down payment for a future house and make up for the losses I caused now (a result of student loans--another big mistake).
So, in the end, my retirement account will be smaller anyway. We will lose the money we've put toward the lost house. And I will lose several more years of good nights with my children.
Lesson learned: Never let me deal with money.
Caveat: I do know that many people would be happy to still be able to own their own home and would be grateful to have all of the opportunities we have, but it doesn't change the fact that this hurts me and has left me an emotional wreck.
Sunday, June 17, 2012
From July 2010, when DQ was the sickest, until April 2011, after DQ's last open heart surgery and just before she was the healthiest ever, she grew about one inch. One inch in nine months for a 2.5/3 year old. That was not good. But, as DQ started to get healthier after surgery, she started to grow. Between April 2011 and August 2011, DQ grew about three inches. The single largest growth spurt ever for DQ at the time her heart was the healthiest ever.
From August until Christmas Eve of last year, DQ grew another two inches. We were excited that the trend would continue, especially since DQ had just started Hizentra and cutting way down on illnesses.
Then, I started to notice her going down hill. It wasn't enough to pinpoint, just something I noticed and felt. The doctors saw nothing they could do. They didn't feel like any changes could help, so we moved our baseline for "concern".
We measured DQ today. In the six months since Christmas, DQ has grown about half an inch. Only half an inch. When TRex was that age, he grew about three inches over six month. And DQ hasn't really gained weight either. She is hovering around the 28/29 pound mark.
She's not growing. My baby is not growing.
All she wants to do is be big. She wants to move out of her car seat into a booster. She wants to be able to climb onto Mommy and Daddy's bed all by herself to hear her good night story. She wants to sit at the dining room table without being on her knees and she refuses to use a booster.
My daughter is four years and three months old. She is the size of a two year old. The year before her last open heart surgery, she didn't grow at all. She stayed the same weight (between 24 and 25 pounds). Are we heading there again already?
Wednesday, June 13, 2012
Friday, June 1, 2012
And should I be condemned because while she is busy planning how her new bedroom will look (pink and purple with butterflies), in the back of my mind, I wonder how much medical equipment will we have to fit? What would you think of me if you knew that I worry if we have steam heat that could pose a problem for an oxygen concentrator?
I love the look of hardwood floors in a home. But, now, as I look for our new home, I see hardwood floors as an added bonus because they will help keep down infections should the doctors decide DQ may qualify for a transplant (which is really the only option she will be left with someday, should someone decide she is deserving enough). Does that make me bad?
The Dancing Queen is doing pretty darn well these days. Since we set a new baseline, DQ is not showing signs of worsening. I feel like we are living a "normal" life, even if it is just normal for us. But I know we are on borrowed time (or is it just time?). Will it be tomorrow? A year from tomorrow? Five years? Twenty? I'm planning for forever. And in the back of my mind, I'm haunted that we're going to build this new home and it will be home from which we tell our daughter goodbye. I can't help it. I want to believe that DQ will be here for much longer than me, but I simply can't believe it. I want to ignore that DQ has ever been sick at all, but that is not possible. I want to embrace that is doing better than ever before, but I know that will not always be the case.
I'm not planning on bringing in the medical bed when we move. But I also can't ignore the fact that we may have to do that in the future. And having these conflicting feelings is really hard. I don't want to plan for a future where my daughter is sick, but I nobody has EVER promised me that won't be her future. They've never even told me it is likely that it won't be her future (like is told to most of the parents of children with tetralogy of fallot). And believe me, I've asked.
Yet, I feel guilty thinking about the practicalities of a DQ's precarious future while buying a new house.
And now that I've said it, hopefully, I can leave the guilt behind?
Thursday, May 31, 2012
As I closed down the computer, I noticed that the email was from TRex's teacher. The subject was "June Volunteer Calendar". I knew I couldn't help in the class this month, so I almost deleted it without reading. But, I didn't want to miss any other news she might have, so I opened the email. As I read the short email, a gasp caught in my throat: "Attached is the June volunteer calendar. I can't believe the school year is almost over."
The final weeks of kindergarten! Wasn't it just yesterday that TRex was stressing out about starting kindergarten? Wasn't I just freaking out about whether he should even go? How could my baby, so small and innocent, be finishing kindergarten?!?!?!?!?
I began to cry, big fat tears.
TRex has grown so much in the last school year. He is no longer a little kid. He has matured so very much. And he has learned even more. My son who refused to color because he "hated" it, is now drawing intelligible pictures, coloring them, and writing stories for them to boot!
TRex is reading beginning books to us easier than even a month ago. Each day, he learns more. I swear it is exponential. Yet, I didn't realize the magnitude of this growth until that email.
My son will soon be a first grader.
A first grader.
Wasn't I just changing his diapers yesterday?
I'm not ready to be the mom to a first grader . . .
Wednesday, May 30, 2012
Then one of my circle of pulmonary hypertension friend's daughter was placed on hospice. They created a bucket list for Molly. When it became evident that Molly wasn't going to live long enough to accomplish the vast majority of things on her bucket list, people from across the country and the globe printed off Molly's picture and took her places and gave her experiences so her bucket list could be completed. In Molly's final days, she laid in her bed with her mom, looking at her picture traveling the world. She did so many things. And she continues to do so.
Molly's story made me think. I can't continue to put off my life until tomorrow. While I spend so much time trying to give DQ a wonderful life, I've ignored that for myself. And even though I tell the kids all of the time that nobody knows when they are going to die, something in me keeps saying "wait until tomorrow." So, I decided to start my own bucket list.
The problem is . . . I don't know what things I want to accomplish. I don't want to run a marathon or climb Mt. Everest. If I never swim with the dolphins or learn to play the violin, I'm okay with that. So, when I started this blog post last week, all I could think of was one thing--visit Iceland. But, really, I'd rather sit on a beach closer to home, than jump on a plane for a really long flight. So I took Iceland off my list. After all, a bucket list should be full of things you feel compelled to do and would regret not doing. While I think it would be fabulous to see Iceland, I'd rather be home relaxing with my family.
And so I continued to ponder what would be on my bucket list. Eventually, I came to the conclusion that there isn't any single thing I must do or I will regret not doing it . . . except spend time with my loved ones. I want time to enjoy my family. I want to be with them and see them enjoying life. I want to entertain in my home, inviting friends over, and make them lavish meals that I can watch them enjoy. Or even have a house that is convenient for just stopping by for coffee in the evening to chat.
I don't want to miss my kids going to bed every night. I want to hug them and kiss them and tell them stories. But, I still want to get them off to school in the morning and kiss them goodbye.
All of these things are very difficult right now because our house is so small. In order for me to be home at night when the kids go to bed, I have to pack up my work for the night, bring it home and clean off the dining room table just to set my computer down. While it only takes about 15 minutes before and after I work, it is a hassle that I just don't want to deal with for an hour's worth of work, so I kiss my babies over the phone and then again when they are asleep. But, if I had an office at home dedicated to my work, it wouldn't take that long. We don't currently have the space for me to have my own office (my kids share a bedroom!).
If I want to cook for friends, we have to squeeze into my dining room/office. Six people fit, sometimes eight, but that requires some people sitting in the other room! This is not conducive to entertaining.
So, in order to make my "bucket list" a reality, the Mad Scientist and I are looking for a new house--our forever home. I am excited and petrified all at that same time. Please wish me luck and when we have some space, you'll all be invited over for coffee or a gluten free lasagna extravaganza! (Yes, I am feeling better gluten free. Can't imagine going back!)
Friday, May 25, 2012
Sometimes, I think that is true for blogging as well. If a blogger posts and nobody reads it, do her words still matter?
For me, the answer is a resounding, YES!
I can journal and I have. Before my blog, when something would get me really worked up, I'd jot it down as quickly as possible (much like most of my blog posts) and then leave it. The goal was just to get it out of me. That would help, but part of the process for me is the follow up. Coming back hours later and re-reading what I wrote, learning from it. I often learn more about what I think and what I feel by reading my own thoughts later and ruminating on them. The thing is, when I would write my thoughts on a random piece of paper, it would get lost or cause clutter. That wasn't helpful.
So, despite my frequent absences, I will continue to blog. Even if nobody reads this.
Thursday, May 24, 2012
I think that is the same for all scars. They make us real. They hold our stories, are evidence of a life we have lived that wasn't a fairy tale.
I have a crescent scar on my left index finger. A reminder of a summer weekend long ago. I was a teenager, chopping rhubarb for my favorite ice cream topping--strawberry rhubarb sauce--and my mother walked in and scolded me for using such haphazard strokes. So I started cutting "properly" and promptly cut my finger down to the bone. It was a clean cut, very straight. My dad, the nurse, decided no need for a hospital and stitches, so he just bandaged it up really, really tight. It was numb for the longest time and after it healed, I would find myself running my thumb over it all of the time. There is still a bump there. It is smaller now. The finger still doesn't have all of the feeling back. It is a reminder to me. I've never cut myself like that again.
Then there are the scars that were placed purposefully. DQ's body is riddled with scars, evidence of the many struggles she has faced in her young life. She has the obvious zipper scar down her chest that doesn't look very zipper like any more since there are three intersecting lines, each various shades of white. She has many smaller, puckered scars from where chest tubes had been placed to drain fluid following her several surgeries. She has a scar on her neck where the surgeon sliced through at the beginning of her last surgery to be prepared in case they accidentally cut DQ's coronary artery when getting to her heart (she now has a gortex shield over her heart to prevent such a possibility in the future). DQ's arms and legs are covered in small scars from blood draws, IVs, arterial lines, and catheters.
I don't know if I ever saw DQ without these scars. I know we don't have any pictures of her chest before it was cut open. It is who she is. We call the scars DQ's special scars. We want her to wear them with pride for all that they mean: her badges of honor that declare to the world that DQ has fought to live this glorious life. She has no shame of them. In fact, she will tell you the zipper scar is where the doctors fixed her special heart.
Yet, because scars do tell stories, people often read them without asking any questions. Assumptions abound when it comes to scars. And we all know what assuming does.
I remember one Saturday afternoon, a long time ago, when TRex was at swimming class and I had taken DQ to McDonalds for a special lunch. As I was waiting in line to get food, DQ raised her shirt over her head (as many toddlers do). All of the people looked at her, then at me with shock. I swear that the woman behind the counter was ready o call protective services on me. She asked me what happened to my baby. I explained that she had had open heart surgery and then everyone averted their eyes and went on their way.
Ever since then, I've been more self-conscious of DQ's physical scars. I don't like it. That is not the story I want for my baby. I try not to let it show, but my fear of what people think is there in the background. Always.
Harder still are the scars that can't be seen. I've written previously about the scars numerous hospital stays has left on DQ--her fear of doctors and nurses coming to her in the night to poke and prod and test and torture. And TRex's scars from having his sister taken away to the hospital and knowing she might not come home. What stories do those scars hold? How I do I help my children tell those stories without the scars being defined by someone else?
Monday, May 21, 2012
Unfortunately for us, DQ is exceedingly strong-willed. I've always said that is what saved her life as a very little baby when she was so very, very sick. I also knew even then, as she struggled to grab hold of her cords as a newborn under deep sedation, that we would be in trouble when she got older. I always assumed it would be more when she was a teenager though. I never considered that she would make the horrific threes even worse than they normally are and that she would make them last so much longer. (Granted, when she was a newborn, I had not yet learned of the horrific threes. We were barely in the terrible twos with TRex when DQ was born.)
But as much as DQ is incredibly cute and extraordinarily smart and no matter how we disciplined her in the same manner as TRex, she has indeed made the horrific threes last about 2 years now and she is still going strong! My little lady can be a terror. Because of her smarts, she thinks about how best to be naughty and does it in style. Her strong-willed nature serves to make her continue with her course of action no matter what punishment she receives.
She recently lost tv and music in the car for an entire week. She has lost toys. She has been locked in her room. And yet, she continues to push each nerve.
We will put DQ to bed. She will be so tired, yawning and ready. But then, 20 minutes later, she will giggle and laugh. And when we go up to tell her to go to sleep, she'll put her hands over her face, attempting to hide the biggest of smiles, just mocking us.
She did this last night. We turned the lights out at 7:30 pm (normal bedtime). Both kids were tired, but not overly tired. They should have gone right to sleep. But DQ didn't. She laughed. She jumped out of bed, running around her room. She giggled. MS and I both went up at various times. First, we warned her of consequences if we came back again. Then, she lost her pacifier until she could calm down for 10 minutes. Then her pillow, blankets, and pets (stuffed animals). She still was goofing off and keeping TRex awake. The big guns were pulled out and she lost a toy. And finally, at 9:00 pm, she had stayed in bed, calm long enough to earn back her pacifiers (the pillow and blankets had been given to her before then). She then fell asleep.
This morning, DQ was very well behaved, more so than any morning in recent memory. And as she and I walked back to the car after dropping TRex off at school, she told me "Mommy, I don't think I'm going to be naughty any more. I'm going to listen. I don't want to lose anything else." We then discussed how losing tv, music, and toys doesn't have to happen if she'd listen. She said she understood. I even explained that if she behaved well enough for long enough that she would even get special recognition. She liked the sound of that and promised me she would try really hard to behave. I felt like we had finally broken through to her and were about to turn a corner.
Then, DQ had a rough day at school. She complained of being tired. She was blue a lot. She asked to go to bed early tonight. Both the Mad Scientist and I were worried. DQ was in bed, lights out before 7:15. She promised us she was going to go to sleep. I reminded her of her promise to me this morning.
Yet, less than 15 minutes later, she was out of bed and giggling. I've lost count of the number of times we've had to go upstairs. DQ lost her pacifier for the entire night (the first time ever). She lost tv for the entire week (after kicking me in playful/joking way as I searched for hidden pacifiers). She lost music in the car for the week. Just when we thought she'd calmed down, she jumped out of bed, goofing around some more. She ended up losing two more toys before she calmed down.
Then DQ realized that we meant it when we said she would not get her pacifier back tonight. Oh, the horror!
It is 8:30 now. I'd like to say she is asleep, but she is not. In taking away the pacifier for the night, we've made the point. But I'm afraid this is going to be a very, VERY long night.
Monday, May 7, 2012
After law school though, I needed a job and I needed to go home to Detroit. So, I did.
Six months later, the Mad Scientist entered my life. Before I knew it, we were married and trying to have a baby. I knew I wouldn't be moving to the UP (MS hates snow). So, when I had the opportunity to show my new husband where my heart had been before I met him, I took it. The Mad Scientist changed the oil in the car, we packed, and we were off for a week in the UP--our honeymoon nine months after getting married.
It was August and very warm down state, but the UP is different. The weather was nice, but air conditioning was never needed. We could drive with the windows open, enjoying the breeze while we cruised at 55 miles throughout the entire peninsula.
The entire trip was amazing! I had never been a tourist in the UP (not since going there as a kid with my grandma and aunt). And the Mad Scientist had never been across the Mighty Mac. The two of us cheesed it up and took everything in. We stopped at all of the tourist traps. We enjoyed all of the beaches. It was exactly what a honeymoon should be--part adventure, part relaxation, and just the two of us!
|The first stop of our tour: the Mystery Spot near St. Ignace.|
|We took pictures of the signs marking our spots so we knew where we were on our trip.|
|Yes, he was standing straight inside the Mystery Spot.|
|Then we started down U.S. 2.|
|Lake Michigan to the south of us.|
|I was the only one brave enough to go in.|
|The Mad Scientist stayed on the beach!|
|We noticed an inordinate amount of signs for smoked fish, so we had to take pictures.|
|The "EAT" restaurant always made me laugh when I would drive by on my way to school. Had to get a pic on our Yupper Honeymoon.|
|Breakfast on Day 2 at the Navigator in Munising.|
|Boat tours for Pictured Rocks--our planned adventure for the morning. Cancelled due to dangerous waters.|
|We went to see the park from land instead.|
|There was a stunning waterfall.|
|Miners Caste with water coming out the hole.|
|And the honeymooners. Gosh we were young!|
|We then headed toward the Keweenaw, passing through Ishpeming and the US National Ski Hall of Fame along the way.|
|We finally made it to Houghton and I took MS to see Michigan Tech, my alma matter. (That is float copper he is hugging.)|
|We stayed at the Laurium Manor Inn (this is their picture of the inn since we didn't take any on the trip). Since Laurium is centrally located, we used it as our starting point for the rest of our adventures.|
|The Mad Scientist wanted to take a souvenir. Here was his rock.|
|He returned it to nature, but we still have the memory.|
|Another memory was leaving the beautiful spot, days into our journey, after hundreds and hundreds of miles, to realize the oil cap had not been replaced, but left sitting on the engine. We opened the hood and it was still there!|
|Our next stop, Eagle River.|
|More falls. The UP is covered in beautiful waterfalls.|
|I've always loved this wooden arch bridge.|
|I love him too!|
|Yes, all of these things are right off the side of the road. No heavy hiking required.|
|Who would'a thought we'd find a rock that looked like the lower peninsula in Manganese Lake.|
|This is the hoist.|
|Yes, that is more copper. We were in Copper Country.|
|Had to suit up to stay safe and keep warm. It might have been late August, but going into the mine was still cold, even if we were only going on a tour.|
|On the tram ride down into the mine for our tour.|
|This is the Jacobsville Lighthouse. To get this picture, the Mad Scientist walked out on wet metal very far. I stayed on the land.|
|This picture was taken from the same location as the last, but the Mad Scientist was trying to get me on the shore.|
|The old lighthouse was turned into a B&B.|
|As we drove home, we had to take some last photos of the road. This is Christmas, Michigan.|
We had a wonderful trip. We played lots of games (especially Mancala). We read lots of books. We ate good food. And we made lots of memories. Best of all, the Mad Scientist was able to know a place that held my heart.
The UP still holds my heart. I know I will never live there again, but we will visit. And someday, the Mad Scientist and I will take the kids to see where mommy went to school. I hope they will learn the love for the trees, the lakes, and even the snow.
If you enjoyed my Michigan memory, please click over to two fellow Michigan bloggers, Jackie at With Just a Bit of Magic and Lauren at Mrs. Weber's Neighborhood, who started a new meme to share Michigan memories. Share your own too!