Friday, December 12, 2014

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.


Thursday, December 11, 2014

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.

Monday, November 10, 2014

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?


Thursday, October 16, 2014

"Inclusion"

Since the Dancing Queen was very little, she hasn't quite belonged.  I wrote here years ago how she was treated like a doll by the bigger preschoolers (many younger than her, but bigger).  The practice has continued through the years, but the divide by DQ and her agemates continues to grow.  She has friends in her class, but there are definitely areas where she lags behind and it makes her seem so much younger.

DQ reads and writes way better than TRex did at the end of first grade, let alone the beginning where she is now.  She is doing remarkably well with academics.  It is socially where she falls terribly behind.

We've put her in dance class and girl scouts to help her interact socially with other first graders.  Unfortunately, she has to be in a special needs dance class because the "regular" class for 6 year olds will not accommodate her need to rest or slow down.  So, she is with a bunch of older kids, teens, and a smattering of little girls who are all cognitively below her and, socially, just as far behind, if not further.  This does not help, but DQ gets to dance.

Girl scouts is a bunch of girls her own age and in her class.  Unfortunately, instead of helping her belong, much of the time, DQ is simply made to feel out of place.  Girl scouts simply provides her with lots of opportunities to watch the other kids do things that she cannot do or must do in an altered fashion.  DQ has trouble with fine motor coordination as a result of her 22q deletion syndrome, so when the girls complete projects like rubberband bracelets, DQ cannot do so on her own.  When the girls simply run around and be little girls, DQ cannot join but for a minute because of her heart failure, so she is left to watch as they have fun with out her. For trips, DQ needs her wheelchair.  Any activity involving food (which activities don't involve food?) and there is not even an attempt to include DQ because it is too difficult to do gluten free.  (Don't even get me started on this--I can't send tree nuts for TRex to eat on his own, but when the class parties come and there are communal treats, they don't have to accommodate DQ because it's too hard! How much bullshit is that!!!!!!!!!!!!!!!)

So during girl scout meetings and events, DQ must watch a room full of girls just who are supposed to be doing things with her, exclude her.  DQ is left frustrated and angry. She lashes out. Who can blame her?!? But that segregates her all the more.

I use these times to help her understand that not everyone is the same. These are learning moments for her to accept her differences; to understand that she may not be able to do everything the same way, but she can still participate.  These are the same lessons DQ learns in school and everywhere else she goes.  There is not a day that goes by that we don't have to teach DQ that sometimes she will be left out.

But today, as the girl scouts chose to attend a play together at the time they are serving a lunch that DQ cannot eat (rather than a different showing that would not cause DQ to be singled out AGAIN), I wondered: When is it the time to teach the other kids to think of DQ's feelings?  When is it the time to say: this might require a little more thought, but we'll bring gluten free snacks so that everyone can belong?  Why should my daughter be the only one who has to change or has to learn?  Isn't one of the main purposes of inclusion to teach the rest of the world that disabled persons are people too and that they matter? DQ works harder than the rest of kids to simply breathe! Why can't they eat freaking popcorn for snack ONCE! When the kids are running around for ten minutes like chickens with their heads cut off (and I'm not supposed to be in the room), can't the leaders suggest they play a game that everyone can do? And if I'm not allowed to assist, are you going to make sure that the activities are able to be performed by all of the girls or should the girl scouts change their requirements to specifically exclude children with fine motor delays?!?!?

I guess I should be grateful that the girl scouts allow DQ to tag along and pretend like she belongs since the dance studio won't even do that.  But I'm not grateful.  I'm angry and I'm sad. I would pull her out if she didn't ask to stay.  Unfortunately, she doesn't know any better. Nobody outside of our family has treated her like a regular kid.  She doesn't know what it's like to have the girls actually play with her instead of at her or using her as the toy.  This is the only way she has ever belonged and it feels normal to her. But, for me, I feel like they are trying to force her out. They don't want to change, so they will make it so uncomfortable for her that eventually, she'll give up and they won't have to think about the disabled child. And frankly, I'm so exhausted that I can't fight this fight. They don't want to accommodate, so I'll keep teaching DQ. She will be a good person. As for all of those girls whose moms think they are so great because they treat DQ like a doll, those girls are losing the opportunity for real growth. It is a shame because if they were just guided, they'd do it easily.  But their parents are too blind to guide and I have too many battles on too many fronts to deal with this one.
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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