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.

Magic Wand

A couple of nights ago, as I laid the Dancing Queen to sleep, I gave her a good dream as I always do to try to keep her happy at bed time and push the nightmares away.  That night's dream involved two of her favorite things--rainbow wands and being Elsa .  After she and I kissed the dream, filled it with love, and smooshed it into her head for safekeeping, she turned to me and said: "Mommy, I wish I had a magic wand that could give me powers like Elsa and make rainbows too!"

You can dream about having magic powers, honey, but I don't know how to make magic and I don't know anyone who can.

"The Chef can, Mommy!"

You think the Chef can make a magic wand?

"I know he can, Mommy!  He makes potions all of the time and magic wands are similar."

Well then, the next time you see the Chef, you'll have to ask him to make you a wand.

"Will you do it, Mommy?"

No, honey.  With something this  important, I really think you need to ask him yourself.

"Okay, Mommy.  I will ask the Chef to make a rainbow wand that makes ice and snow and rainbows."

You do that, sweety.  Good night.  I love you and will see you in the morning.

I totally thought that she would forget about the wand by morning.  She comes up with ideas like this all of the time and forgets about them fairly quickly.  However, the magic wand idea did not fade.  Rather, it grew.

As of last night, the Dancing Queen's wand that will be made by the Chef had grown in power.  She was certain it would turn her brother into Om Nom from Cut the Rope.  She thought that was hilarious.  The wand was going to take her places and get her ice cream and houses made of candy.  She couldn't wait to see the Chef again to ask him.

As the extravagance in wishing grew, I reminded her that magic is not real and that the Chef may not be able to make her a wand.  She was not deterred: "Don't worry, Mommy.  I know the Chef can do it."

This morning, DQ found her own non-magical rainbow wand left over from her rainbow birthday party.  So as not to tax the Chef too much, she decided she could use that wand and all the Chef would have to do is create magic dust for it.  When I asked how she knew the Chef could make magic dust, she quickly responded: "Mommy, he makes potions all of the time.  What do you think magic dust is!" How could I argue with that logic?

At breakfast though, the magic wand became ever more important.  The Dancing Queen was in pain again.  She could not eat because the pain was too great (this is a very common occurrence--we're lucky if we can get her to consumer 40 calories at breakfast).  As DQ laid her head on the kitchen table, she stated matter-of-factly that the first thing she will wish for when the Chef makes her magic dust for her wand is no more tummy aches.  TRex quickly jumped in and said he was going to wish for DQ's heart to no longer be broken.  The children were so sincere and wanted this so much.  We had moved beyond rainbows, houses made of candy, and video games.

I wish you didn't have pain either DQ.  I wish your heart wasn't broken.  But you have to understand that the  Chef is probably not going to be able to make you magic dust.  And even if he does, the dust may not help  your belly or your heart.

"No, Mommy.  The Chef can do it! I know he can!"

Please promise me DQ that you won't get angry with the Chef if he can't make you the magic dust that you want.  I have no doubt he will try, but some things are very hard to do, even for the Chef.

"Mommy, the Chef CAN make me magic dust, but if it doesn't work the way I want it, I won't get angry."

Thank you, DQ.  Thank you.

Somebody Else

"Mommy, I don't want to be DQ forever.  I want to be somebody else." 

Why would you want to be somebody else, sweety?

"I have a lot of pain."

Everybody has pain, DQ.  If you were someone else, you'd still have pains sometimes.

"But, mommy, most people don't have pain like I have pain.  I always hurt."

I looked across the kitchen at the hospice nurse, there for her bi-weekly checkup. We both gave knowing looks.  DQ was right.  Most people don't have pain like her.

I took a deep breath and  gathered myself.

But if you weren't DQ, you wouldn't love music in the same way, you wouldn't be able to sing as well.  If you weren't DQ, you would lose all of the wonderful things about you that make you special.  DQ is an amazing, wonderful little girl with so much light and life.  If you weren't DQ, you would lose that.

She just stood there, crumpled and sad.

If you weren't DQ, we wouldn't have the smile that lights up the entire room.  And you probably wouldn't love pink and ice cream as much.  If you weren't DQ, you wouldn't be able to read to me like you do.

I know it seems like it would be nice to be somebody else because you don't want the pain any more.  I don't want you to be in pain either. But I don't want to lose you and all of the wonderful qualities that you bring to life. I love my strong, sweet, funny, amazing Dancing Queen and I wouldn't want her to be anyone else.

Her shoulders weren't quite so stooped any longer, but the sadness still enveloped her.

The pain was too much today.

Naptime

It was Saturday afternoon. As I carried in groceries, the Dancing Queen cried out over the monitor.  She didn't want to take a nap.  The Mad Scientist tried to talk to her, cajole her into some sleep, but she didn't want to miss out on anything now that mommy was home.

I left the boys to put everything away and brought the Dancing Queen to my bed.  I laid her down and promised to stay with her if only she took a nap.  (The night before had been hard.  The Dancing Queen's rest was broken by lots of pain--her ear filled with infection. Again.)

I needed her to sleep.  She was so tired, exhausted.

After a couple of minutes and telling me several times that she didn't need to sleep, "just rest", her breathing steadied.  Her eyelids stopped flickering.  She stopped switching out pacifiers. 

For a while, I just laid there, listening to TRex downstairs.  He was making a lot of noise, excited to be spending time with his daddy.  Then the doors banged one last time as the boys carried Christmas lights outside for hanging.

So, I laid there, head-to-head with my sweet girl, breathing her in.  I watched her long, long lashes, unmoving now.  When was the last time I had looked at them?  They looked just as they did when she was a baby.  She always had the longest eye lashes.

She made the faintest of sounds as she slept.  And the constant hum almost lulled me to sleep.

But then I listened to that musical heartbeat.  I started to count the missed beats and tried to find a discernible pattern in the way it would speed up and slow down.  And as the Dancing Queen's body seemed to fall deeper and deeper into sleep, her heart never felt at rest to me.  It didn't seem even either.  There was no set rhythm.

And I was reminded of how fragile all of this is.

How much longer before too many beats are missed?

When will that faulty rhythm be too out of sync? 

As I silently wept in my baby's hair, holding her tiny hand, I wished for the moment to last forever.

Instead, the Dancing Queen rolled over, leaving me . . .

Blowing Out the Candles

TRex will turn 7 a week from Monday.  Since his birthday party is next weekend, we celebrated as a family this weekend by going out to eat Friday night.  TRex chose Maggiano's because of their big rectangle pizza that he loves (DQ and I love it because they offer a good selection of gluten free food).

The dinner was wonderful.  We spent the evening asking TRex to say "th" words so we could laugh at his toothless pronunciations (he lost his top two front teeth this week).  TRex told us about his plans for his Return of the Jedi Party and which of his guests would play each role.  TRex intends to be the Emperor, but good, the Mad Scientist Darth Vadar, and DQ Princess Leia.  We discussed our days and just had fun together.

At the end of our extremely normal birthday dinner, TRex ordered cheesecake.  The Mad Scientist surreptitiously asked the server to put a candle in it.

TRex's eyes grew big as he watched the candle-lit cheesecake come toward the table.  There was no over-the-top singing to embarrass him, so he could concentrate on his wish. And that is exactly what TRex did.  He closed his eyes and thought long and hard about his birthday wish.

After several long seconds, TRex blew out the candle.  The waiter teased that he must be wanting something really big, while DQ begged TRex to tell her his wish.  The Mad Scientist and I explained that TRex didn't have to share because it might not come true.

TRex wanted to share though.  He needed to share this particular wish, so he declared that it was okay to share because it was for all of us.  Then TRex blurted out that he wished that all of us would be together every year on his birthday.  All the while, he was looking at his sister with the most love I've ever seen in his eyes.

I immediately burst into tears, unable to control myself.  I think silent sobbing is a more accurate description. Even remembering the moment right now, I have tears streaming down my face.  I can handle not being able to give my son a life-size At-At for his birthday or telling him we can't send him to the moon, but all he wishes for is his family to stay as it is--together--forever.

Oh how I long for that wish to come true for sweet, sweet boy.  He worries all of the time. No matter how often we remind him that his sister is doing well today, he can't forget that she could be gone tomorrow. And it makes him all the more sad. Hopefully, if his birthday party is as big of a success as we hope, when he blows out the candles on his Star Wars cake, he will wish an average 7 year old wish and forget his very grown up worries.

The Choice

I had what I consider a deep a conversation with a new acquaintance the other day.  That conversation won't leave me.  It continues to stick even days later.  The conversation wasn't bad.  In fact, I rather enjoyed it (for the most part).

I'm guessing it was a cultural thing, but the woman asked such intimate questions without hesitation or reserve.  I grappled for answers, not because I didn't want to share, but because they made me think.  I like that!

It is one question in particular that lingers though.

She asked me about the Dancing Queen and whether DQ would need other surgeries.  I usually cringe at that question--there is so much to explain so that I don't get people second-guessing our decision.  But, with this woman, the answer seemed to come easily.

Then she asked if I had known about DQ's heart defects when I was pregnant.   I explained that, yes, we knew.

Then, without reservation or pause, she asked why I didn't terminate my pregnancy if I knew.

Of course I knew how to answer the question.  I was asked at the time if I wanted to terminate my pregnancy.

The woman wanted to know if it was a religious decision.  I admit, I laughed at that.  But I told her what I told the genetic counselor 5.5 years ago: Ending my pregnancy was never an option for me.  DQ was my baby before I was pregnant.  I loved her from the moment I felt the pangs of illness and knew that I was pregnant.  There was never a choice.  I had to fight for my baby and give her every chance at life.

I think it was really hard for this woman to understand.  I don't know if it was cultural or because she has not had a child of her own or if it was something else entirely.  I know what she perceived about my life scared the hell out of her.  But she doesn't know DQ, doesn't know the smiles, the love, the hugs.  She never saw DQ dancing in a hospital bed or felt the weight of her hugs.  All this woman knew about was surgeries and hospice.

But I still think about that question each day.  How dare anyone question whether my daughter ought to have had the right to live!

I have no regrets about having DQ.  She, TRex, and MS are the best parts of my life.  Do I wish DQ didn't have to suffer so much pain?  Do I wish we didn't have to think about her dying?  HELL, YES, TO BOTH!

But ending my pregnancy would not have been right.  DQ has so much more joy than pain*; so many more smiles than grimaces; so much LIFE.

And no matter what I have done in this world, my daughter has done more.  I may be an attorney with an "important" job, but she is the one who inspires.  She brings joy.  My life would not have had the same meaning, the same depth without her in it.

If I could have one wish for the world, it would be that everyone understands that no matter how small you are, how short your time, or how alone you feel, you CAN make a difference.  Touch one soul and you can change the world.  I know it is possible.  My daughter has proven that to me!


                                                               

* Or at least she doesn't let the pain take away from her joy. I don't know which.

Night

I wish the same wish every night: Please run to my room and hug me in the morning. Please wake up and yell "mommy". Please don't let this end. Please give me tomorrow. Please find a cure. Please hand me a miracle. Please let me wake from this nightmare. Promise me forever!

And in that desperate plea, the pain is unbearable. Ever fiber of my being screams "there is no other choice but to find somebody smarter; to scour the world once more." I can't give up fighting. Maybe, if I hug her tighter and I wish harder, the answer will come.

And when my mind hits this ridiculousness, I snap back to reality. I flip the tear-stained pillow and claw my way to sleep.

Playing Games in a Tent

Mommy, I want to dream about playing games in a tent with you aaaand . . . eating Azteca.

aaaand . . . eating healthy foods at home.

aaaand. . . eating strawberry shortcake.

aaaand. . . going to a chocolate factory.

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.

Nightmare

I saw the GI about two weeks ago and it was decided that I needed to be biopsied again. I scheduled the test for May 7 because I had a trial before then. At the time, I was feeling bad--nausea after meals and the pain and other the symptoms I had been experiencing for a long time--but it was manageable. The doc even offered me pain meds that work specifically on the small bowel where my pain has been concentrated forever. I declined because I knew no matter the test results, after the test, I was going gluten free to see if it helped. The GI was in agreement and actually suggested it before I mentioned that was my plan. So, I left that appointment, ready to do what was necessary. I had a plan.

That was about two weeks ago. With the test coming, I made certain I was eating at least two glutenous meals a day. And then, I started to get worse. Every symptom has intensified. And now, I'm living in a food nightmare.  I dread eating, but I seem to always be hungry, even after eating. I feel like I'm living in a constant fog and I can't concentrate. I'm tired all of the time, but I can't sleep. The pain and nausea are at all time highs. I could barely drive the other day and as soon as I got home, I kissed the kids (barely) and dropped into bed, crippled over in pain while the world seemed to be spinning relentlessly.

The Mad Scientist implored me to stop the killing myself for the diagnosis and TRex begged me start not eating what I love, but I didn't have a day to take off before the trial, especially since I didn't work Thursday afternoon through Wednesday morning.

And then it happened, the trial got wrongly adjourned (by the other side), so I gratefully moved my test up. I will finally be able to go gluten free this Thursday. When I began this journey back in February, I dreaded going gluten free. But now I'm ecstatic at the thought. I want to feel better. I need to feel better.

Gluten had better be my nemesis. I can't take any more of this nightmare.

Wordless Wednesday: Mommy

The Dancing Queen and her baby.

 
Gone are the days of DQ wanting to be Thomas. These days, she plans to be a mommy when she grows up.
Let's hope her dream comes true.

I Wish!

I hate being an atheist. I hate it. I hate it. I hate it.

I wish I could believe in God, in heaven, in the hereafter. But no amount of wishing will make me believe something that I do not believe.

Tonight, as I was tucking TRex into bed, he asked about death. He asked what happens. He asked where do you go. He asked about the cemetery and whether everyone goes to the cemetery. The Mad Scientist and I explained that not everyone does. He asked what we will do. The Mad Scientist explained that we plan to give our organs, tissues, and whatever else they need to save another person's life, then cremate the rest.

First, he wanted to know what happened to the ashes. I explained the choices availble and told him about my grandpa's ashes in the memorial garden. "But what if you die mommy, where we will bring flowers?" I had to explain that he could buy my favorite roses and have them on his table to remember me by. 

Then he wanted to know why people would donate organs. We of course explained that it was the greatest gift you could give and how tissue donors saved the Dancing Queen's life. On his own, TRex came up with "the gift of living". 

Next, TRex wanted to know if it would hurt when they cut you up to get the organs. When I explained that you are no longer there after you die, he asked in a shakey, scared voice "And the doctors do nothing?" I had to say "if you are dead, there is nothing that can be done." 

I watched him very closely up until that point. I saw the connections being made. I tried to change the subject to something positive, but it was no use. He needed to go there. "What do you mean, mommy?" I told him that when someone dies, you can't hug them any more, you can't kiss them, you will never be able to talk to them again. "Mommy, that is very sad. Do some people cry when someone dies?"

Of course I responded that most people cry when someone they love dies.

"But what if you die tomorrow, Mommy?"

I was sobbing silent tears. "You will be sad and it will be hard, but you'll go on with your life, make new memories, and be happy. You will always know that I love you forever and ever and always. And know that we live each day to the fullest, loving each other and getting lots of hugs now."

"I wish life didn't have to be that way, Mommy."

"I know, baby. I know. But this is how life is. Everyone is born and everyone dies."

"But I wish it didn't have to be that way."

"Mommy, why are you crying?"

The Mad Scientist stepped in, kissed TRex, hugged him close, reassured him of the wonders of life and how we expect to be around for a very long time. I composed myself.  Then I kissed TRex good night again, closed the door to his room, and broke down completely.  I have never seen that sweet little 5 year old boy so scared in my life.

I wanted to tell him when you die, you go to heaven. I wanted him to know that there was more, that he'd see us again. I wanted to give him anything that I could to help him be less scared. But I don't believe that. I can't. I've tried. It would so much easier if I believed. I wouldn't have to expose my children to the pain that is this life without the ultimate silver lining.

I guess in the end though, if we make each day count, like we try to do, we don't need the silver lining at the end. We'll make sure we find the silver lining in each day.

The Cost of a Wish

It has been almost an entire month since I've blogged here. A month. I'd like to say that is because I have been way too busy to blog and when I get a couple of minutes to myself, I play Angry Birds. While that is all very true, it's not why I'm not blogging. (I've already beaten all the Angry Birds levels and have been cleaning it up to get 3 stars on every level.)

I haven't been blogging because I don't have a lot of positive to say and I hate that this blog has become so negative. Unfortunately, my lack of blogging has also made me feel without a way to get "it" out. So, today I blog. I blog for me.

Since we last met, a lot of things have happened. I was named one of the 20 up and coming attorneys in the state of Michigan. The Dancing Queen started immunoglobulin therapy, which is an additional 2.5+ hours each week to give, but is helping her so we're happy. We took the Dancing Queen's wish trip to Florida. There was the holidays. And I've been crazy busy at work.

On the surface, all of these are wonderful things (yes, even being busy at work). And I posted about the big event, the wish, on DQ's carepage and elsewhere, had my happy moment, and now I'm left with what it all really means.

The biggest weight on my mind has been the wish trip. Don't get me wrong. It was amazing and wonderful. I've copied my positive update in the post below, so people don't think I'm not grateful, that it wasn't the trip of a lifetime, that I didn't make memories that will last forever. I did. But, I also had moments that will haunt me.

When DQ was granted her wish, I was so happy for her. I wanted her to have something positive in her life, something to look forward to. I knew why she was nominated and why she was granted. I was the one who contacted Make A Wish afterall. And I specifically contacted them when I did because I didn't know if DQ would be around to make a wish as an older child. I did this. I knew it. And in the year that we planned this trip, I never once felt that this wish trip was anything more than a wonderful experience for my sweet daughter who had gone through hell her entire life.

And yet . . .

The week before we left, we received a check in the mail to cover baggage costs on the flights, gas for the rental car, meals in the parks, and souvenirs for the kids.  Make a Wish had thought of everything so we could have a true experience without worry. At that moment, it started to hit me. This was something beyond nice being done for us. Total strangers were giving us the trip of a lifetime, were taking care of us completely. I felt totally guilty.  We didn't deserve this.

Then, the limo picked us up. We were greeted at the Orlando airport by a volunteer from Give Kids the World. When we got to the village, everything was taken care of for us. There were gifts for the kids, snacks. We were handed thousands of dollars worth of tickets to theme parks.  And at the parks, we got to cut in line for rides or to meet characters. We were first, no matter when we arrived.  The guilt I felt was enormous.

But nobody said anything. Nobody gave us dirty looks. People clapped when DQ hugged Lightening, even though she had cut in front of several dozen kids to meet him a second time. People took one look at DQ and her magic button and stopped to talk to us and make sure we were having a wonderful vacation. Everyone was so very nice.

And in the middle of the first day, it hit me like a ton of bricks: the reason for all of this was because my precious daughter has several life-threatening illnesses. It became more real for me than ever in that moment. I no longer felt guilty, but angry that she had to be so sick to be treated so well. And, in my mind, I challenged someone to complain about our special treatment. I wanted to yell "The price we paid for this royal treatment is our daughter's life!"

And at the same time, I felt incredibly sad. I so wanted to trade it all back. I wanted to stand in line for hours, hearing my kids ask hundreds of times "is it our turn yet?" But, we were on a wish trip because nobody can fix my daughter.

And not a sole complained the entire time we were on the trip. They all knew the price we had paid. I didn't need to scream it at them. They saw it on DQ's face, especially by the end of the week, when DQ looked obviously ill.  Perfect strangers could tell DQ was ill. And not just ill, but fighting for her life. And realizing that truth emotionally, for me, was harder than the guilt.

So, while I can look back and smile at the things we did and cry tears of joy at the memories we created, each time I look at photographs of the specific day the Dancing Queen's wish came true, the first thing I see is a swollen, purple little girl, whose heart was overworked and lungs couldn't keep her oxygenated. And I then I am overwhelmed with the emotions from that day: extreme happiness mixed with utter despair. Why did it have to be her!

(Perhaps you can't tell from this picture, but DQ's lips were purple/blue, her fingers were purple past her first knuckel, and her cheeks are so red because they were stretched out beyond normal due to swelling in her face from blood backing up.)

I will be forever grateful for the gift that was given to our family. We had a week together, without work, without hospitals or doctors, without most of the worries of our everyday lives. We made memories that will make me smile for the rest of my life, but along with that, I will never forget how it made me feel to realize how the rest of the world sees my baby.

Wishes Do Come True

The Dancing Queen's wish from the Michigan Chapter of Make A Wish was fulfilled last week!!! If you recall, DQ wished to meet the characters, especially Elmo and Mickey. So bright and early on Saturday, December 17, a limo picked us up and took us to the airport to fly to Orlando.

Make A Wish arranged for us to stay at Give Kids the World Village, an amazing resort for families on their child's wish trip. The Village is set up just for kids and was so amazing that we could have stayed there all week and had a wonderful time without any theme parks. Here is a picture of us as soon as we arrived at our villa.

We were at the Village from Saturday afternoon through Friday morning. We ate most of our meals in the Gingerbread House where all of the tables and chairs were kid-sized and ceilings were decorated with toys. The angels (volunteers) not only served us food, but carried our trays for us. Right outside the Gingerbread House was a carousel. The kids most have rode it a dozen or more times. Probably a couple of dozen times. They loved it!

The Village also had a giant sleeping tree that snored at us, a water park complete with pirate ship, dino putt putt, a train station with toy trains and a kid train, a life-sized Candy Land Game playground, and lots of other fun things for kids. And every day, when we returned to our villa, there were gifts for the kids! They got stuffed animals (lots and lots of stuffed animals). They got board games, videos, music, and other toys. It was all magical. A special place was the Castle of Miracles, where the kids could play and everyone can see the ceiling covered in over 140,000 stars. Each wish child who had stayed at the Village had a star on the ceiling. Here is a picture of DQ writing her name on her star for the Star Fairy to put in on the ceiling of the Star Tower (an addition built on to fit more stars!)

Both kids also got magic pillows in the Castle of Miracles to have magic dreams during our trip and at home.

One of DQ's favorite things was the ice cream parlor, which was open all day long. We had ice cream every day and we even had ice cream for breakfast! Sometimes, she needed two spoons to eat the ice cream cause it was just so good!

We had so much fun in the Village. The kids smiled whenever we were there and skipped as they walked about! 

We also got passes to Disney World, Sea World, and Universal Studios, so we spent three days at Disney World seeing Hollywood Studios, the Magic Kingdom, and Animal Kingdom. We also took the kids to Sea World. The Mad Scientist and I spent an evening at Universal. Everything was so amazing. We got to the front of the line for everything we wanted to do. DQ was given royal treatment. She had a button from Give Kids the World that told people in the park she was a wish kid, so when we went places, the people knew. We watched lots and lots of parades and in each one, at least one dancer stopped to talk to DQ. Simply amazing. Here is a picture of DQ waiting for the Pixar Parade.

We watched lots and lots of shows.DQ' s favorite was the Mickey Christmas Show in front of Cinderella's castle. Below are some pictures. I tried to capture the pure joy she was showing. These are close, but not true enough. I guess you had to be there to see the utter joy of her being able to sing carols with Mickey and Minnie.

We also did awesome things like eat lunch with sharks, take a safari where a giraffe walked in front of our bus, and see Darth Vadar in person! A highlight was feeding and petting dolphins at Sea World.

But, the main wish for DQ was meeting the characters. And we did that. A lot. We met Jake (from Jake & the Neverland Pirates), Lightening McQueen, Mater, Phineas & Ferb, a green soldier from Toy Story, Buzz, Woody, Pluto, Goofy, Minnie, Mickey, Squidword, Belle (from Beauty and the Beast), Ariel (the Little Mermaid) and Prince Eric, Shamu, and Tinkerbell. There were probably more as well, but I can't remember right now!

TRex's favorite was probably meeting Jake! 

One of my favorite moments was DQ meeting Lightening for the second time. We were about to leave after taking all kinds of pictures. DQ ran back and hugged Lightening as only a three year old could do. She just stood there, hugging his headlight, knowing she might not see him again, just like he was a much-loved friend.  The moment was magical (yes, that word again.) Lightening is one of her all time favorites. She sleeps with him every night.

Meeting Mickey and Minnie was pretty awesome too. They came to visit us at the Village, so we got a little more time with them.

DQ was all smiles when she met Tinkerbell. 

But the most emotional moment of the week was meeting Elmo. DQ's initial wish was for Elmo and at Sea World, that wish came true. I was a blubbering mess as Elmo and all of the Sesame Street friends came to meet with us individually after their Christmas show.

This trip has proven that sometimes, wishes do come true. Seeing my baby's wish come true has done so much to help us all. The happiness that has been brought to our family because of DQ's wish being granted is magical. I know, I've used that word a lot, but there is no other way to describe what was the trip of a lifetime and memories I will cherish forever. I've never seen my girl as happy as she was last week. Thank you so much to the Michigan Chapter of Make a Wish and Give Kids the World Village!!!!!!

National Believe Day

Today is National Believe Day. Makes you want to sit down with some cocoa and watch "Miracle on 34th Street", doesn't it?  Or maybe you'd rather celebrate a different way by helping children like the Dancing Queen have a wish come true.

Every year, Macy's puts out giant Christmas mailboxes in their store. If you drop a stamped letter to Santa in the mailbox, Macy's will get it to the post office, but more importantly, Macy's will also donate $1.00 to Make A Wish.  For National Believe Day, Macy's gives $2.00 for every letter!  Just think of all the wishes Macy's can grant if we all dropped off our letters to Santa!

Not sure Make A Wish is worthy of braving the department stores on a Friday two weeks before Christmas?  Take one look at these smiles, courtesy of Make A Wish just yesterday:

 

 

 

Still not sure? The Dancing Queen will be starting her first infusion of Hizentra this weekend (immunoglobulin therapy otherwise known as a borrowed army that fights yucky bugs/germs).  She has been dreading it because she will need a shot in her belly.  No amount of telling her the needles are small has helped.  But last night, after she received the package from Make A Wish and was reminded of her upcoming big wish coming true, she took the discussion of the Hizentra two hour infusion much better. Make A Wish gives kids a reason to smile. And even though my girl manages to usually smile despite the hell that is her life, Make A Wish, has made those smiles bigger.  I can't imagine how big the smiles will be when her wish is actually granted.

So, on National Believe Day, won't you drop your letter to Santa at Macy's?


(This post is from the heart. No money was given to me for posting.)

---

PS
You can find more of the Dancing Queen at Jodifur's Shoe Friday! 

Thomas

Have I ever mentioned my girl's imagination? I don't think that I have. Let me just tell you, that girl has a huge imagination. I'm talking colossal.

The Dancing Queen didn't really start to speak until she was 2 and had tubes put in her ears for the first time. But when she started speaking, we started to see her imagination shine through. For years now, the Dancing Queen has been pretending to be characters.

She'll wake up in the morning and declare she is Mickey Mouse. You can't call her by her given name. She will only respond to Mickey. Five minutes later, she'll switch characters, but not tell you until you use the wrong name.  So, I'd call her Mickey and she'd tell me "No, I'm Thomas!", even if I called her "honey".  For the longest time, she would just switch between characters, usually Mickey, Thomas, and Lightening McQueen.

One day, neighbors stopped by (neighbors we had never met). DQ was at the door and the neighbors asked her name. She responded, quite seriously, by stating "TRex". Of course, TRex was in the background yelling "No, I'm TRex!!!"  Our neighbors thought the kids were crazy, but I guess that is fine.

Anywho, DQ's pretend play has continued unabated to do this day. However, since last Halloween, she has become more serious in her play.  Last year, when we dug out the Halloween schtuff, DQ discovered TRex's Thomas the Train costume from when he was two.  DQ fell in love.

She wore the costume as much as she could, but if you asked her, she'd tell you she was going to be Elmo for Halloween (she had had me purchase said Elmo costume in August).

 

 

From that point on, more and more frequently, DQ pretended to be Thomas.  Mind you, she doesn't regularly request to watch "Thomas", but she pretends to be him. Constantly.

This year (when she decided to be Izzy from "Jake & the Neverland Pirates), as soon as the Thomas costume came out of storage, she jumped at the chance to wear it.

What's worse, she took her imaginations to a whole new level. At school, she wouldn't respond to her teachers unless they called her "Thomas".  (We worked on that.)

She had a homework assignment that included a segment on what she wants to be when she grows up. You got it, the Dancing Queen has decided she is going to be "Thomas". She knows he is made of metal, has wheels, doesn't eat, and can't give hugs, but she is certain that when she grows up, she will grow wheels and metal. Last week, she got exciting because she learned that she already had metal in her stent and mechanical pulmonary valve. She decided that meant she was half way to being Thomas! And she claims that she gets plenty of hugs now to last. And she doesn't care that he doesn't eat. (Probably because she doesn't either!) And she determined this week, that when she grows up to be Thomas, she won't have to wear oxygen.

It seems she's got it all figured out!  And I wouldn't dare squash her dreams (even if I have suggested a train engineer is a real occupation).  So, in twenty years, if you see a petite woman coming down the street, dressed as Thomas the Tank Engine, you'll know you've met the Dancing Queen.

Etching Memories

I laid in my bed this morning, listening to my family playing games with each other. The laughter was infectious as my babies delighting in their pretend adventures as pirates. I ran downstairs; the crocodile in me had to chase Cap'n Hook. When I captured him, we all laughed. I reveled in the sounds and embraced the moment. I tried to etch it all in my mind so I would never forget; never forget the sounds, the smells, the visions, the feeling, the love.

I've done this often--try to capture a moment in my mind. But we were recently reminded how fragile life can be and how all of this can go away in an instant. So, this moment, this morning, I tried extra hard.

I had started to feel like it was possible that the Dancing Queen would have a future. She would grow up. She would go to college, choose a career, be an adult. I began to think that would be possible. She has been looking so good, even sick. I thought we had finally moved passed the hard part. I could put off the major worries for at least a couple of years. Yes, I would have to be concerned about viruses and stuff like that, but the big things, like heart failure and lung disease, could just be underlying issues that are only part of our life in that DQ takes daily meds. I was getting there.

Friday came and changed it all. DQ's pulmonary hypertension is back. That means her heart is working too hard to oxygenate her blood and the pressure from it all damages the pulmonary arteries that are already inadequate. DQ's heart and lungs are being damaged. And the more they are damaged, the harder they have to work to oxygenate DQ's blood. It is a vicious circle and eventually, the damage will be too much. Unlike last time this happened, I already know what choices we have. I've already called all of the specialists. I've heard all of their answers. I know they have nothing to offer.  There is nothing to save her. NOTHING. nothing.

I have always felt in my gut that DQ would die young. I've hated myself for it. I've fought myself over it. I've tried to wish away the feeling. I've tried to will it away. I've even told myself that she will live to adulthood, figuring if I said it enough, my heart would believe it eventually. But my logical side keeps throwing questions as me: how long can her poor body last when it is beat up everyday? How long can an itty bitty heart that has been cut into and sewn shut, pruned, and messed with so many times keep working when it is forced to work so much harder than it should? How can her poor little lungs that take a beating daily keep working? Muscles can be overworked. Her poor little heart is worked so hard. And while it is healthier than it was a year ago, we've now reached her peak (or likely did a couple of months ago). Her heart will start declining again. What does that mean? How much time do we have?

I know nobody ever knows how much time they will have with their loved ones, but today, I wish I could believe that my baby will live a long, happy life with just enough troubles to know the value of hard work and just enough sorrow to appreciate when life is good. I want her to fail and learn from it. I want her to light up in wonder at the sight of winter's first snow. And I want to see her drive a car for the first time. I want to walk her down the aisle as she marries. I want to help her move into her own home and see the wonderful woman she will become. But, I can't even see how any of it is possible.

Today, I am making memories because these may be the only ones we get.

---

Please don't think by my writing my feelings down that we won't be doing something for DQ. I will be pushing like I always do. I've already started the process to have her placed on oxygen at night again. We will be getting her back on meds for PH. And should it progress, I will push for other meds even though the docs think they won't work. I won't be giving up on my baby. I love her too much.

Unintended Consequences

TRex has been acting out all of the time at home. He is constantly fighting with us. The only response he utters is "no" or the dreaded "neVAH". And I'm at my wits end. I was ever so close to telling him I was going to send him away this morning. I didn't. Thankfully. But, I am at my breaking point with his behavior.

TRex goes through cycles, like everyone. Somedays it is just hard for him to behave. That is usually a sign that something is wrong. He misbehaves until he is ready to spill the beans. Normally, he spills the beans from the back seat of my minivan as we drive to school (the exact moment when I can't hug him or look at him).

But this cycle has been especially bad. So, I waited as I drove this morning to hear what was going on. I got nothing.  I figured we'd have another horrible day and night.  Then, as TRex, DQ, and I headed to the gym where TRex attends the before school program, TRex let it out: he wants to know when he is going to get his wish. DQ is getting a wish and he wanted to know when it was his turn.

I was totally caught by surprise. I had assumed he was having difficulty in school or with classmates. I had no idea he was jealous of his sister. (Although that clearly explains why he has been especially brutal to her--not hitting or anything, but doing the opposite of everything she wanted, messing her hair, taking her toys, telling her no).

Looking back on it, I think we explained to TRex and DQ why DQ was getting a wish a year ago when it was first granted. I THINK we told them it was because the organization heard that DQ spent a lot of time in the hospital and wanted her to get away and not be in the hospital. But I don't specifically remember. And since then, we have all been concentrating on the trip to Florida. Everyone has been excited. We are all going.

I never thought about TRex getting jealous, but each time the trip is mentioned, DQ cries "For me! I made a wish!"

This morning, in the hallway of TRex's elementary school, I was caught off guard. How do you explain to a five year old that his little sister was granted a wish because she has life-threatening illnesses without scaring the crap out of him?  After all, this is the same five year old, who has worried in the past about his sister never coming home from the hospital. We don't shield him completely, but we also want life to be as normal as possible. So, I tried telling TRex that DQ was granted a wish because she spends so much time in the hospital and TRex gets to go on the trip too and have lots of fun because the organization knows he gets very sad when she is in the hospital. I told him how it is not normal for kids to be granted a wish. And that we all are part of DQ's wish. But, I don't think he got it. He didn't think it was fair.

The Mad Scientist and I plan on speaking with TRex again this evening. But how do we get him to understand that what our family faces is not the same as typical families without making him feel oddly different? How do we explain why some children are granted wishes without scaring him and DQ too much? Or is it best to let a 5 year old know the full truth, no omissions? Would that do more harm than good? He already knows so much, but he is so young.

Super Hero Dreams

My son is fascinated with super heroes. At five, he doesn't know much about them, but hears about super heroes from his friends, he has seen The Incredibles many times, and he has spider man pjammies and a wolverine toy given to him by friends a while ago. That is the extent of his knowledge.

But even with his limited understanding, he still knows that super heroes don't exist in our world.  He is certain, however, that they live in another world. (Just as he is certain the dinosaurs are not extinct in another world and the cartoons on tv live in another world.) As TRex sees it, we could meet the super heroes (and dinosaurs and Jake and the Neverland Pirates), if we just visit their worlds. TRex knows that he can't get to those worlds (yet), but it doesn't stop him from believing in super heroes.

So, as we shopped for birthday party supplies, TRex told me of his plan. He and two friends intend to become super heroes when they grow up so that we have super heroes in our world. That way, there will no longer be bad guys.

TRex's fear of bad guys doing bad things to us is also a constant theme these days.  I don't know what these bad guys are or what he is afraid of specifically, but he is doesn't want the bad guys in our house or around us or in our world at all.

And despite his overwhelming fear of most everything, my son wants to grow up to save our world and rid us of all bad guys. He has decided that the military, FBI, and police are not adequate to take care of this task because they are already in our world and bad guys are still here.  He is certain we need a super hero and since nobody else is doing the job, he will do it.  TRex is does not know what super powers he will need to achieve his goal, but he thinks being able to spit webs would probably help.

If anyone can be the super hero for this world, it would be TRex. His empathy makes him want to help. Always. He always wants to ease pain when he knows about it--even if he causes the pain.  When fighting with DQ, if he hurts her and she cries, usually, his first response is to try to comfort (doesn't normally work because DQ is pissed off).  TRex has a strong sense of fairness and fights for what he thinks is right.

I know TRex would make a great super hero. I won't tell him it's not possible. I'm not about to shatter his dreams (much like I never tell the Dancing Queen she is not going to grow up to be Thomas the Train). I want TRex to hold onto the idea that he can defeat all of the bad guys and make our world better for as long as he can. I hope to give him the tools to make his dream a reality (well, maybe not the spitting webs out of his body part).

Will TRex be able to get rid of all the bad guys? Probably not, but one person can effect positive change in their world. And if TRex wants our world to look a little more like the worlds of his imagination, where no bad guys exist, I want to help him do that.

Think about it.  If we all decided to be super heros and did our part to rid our world of bad guys, peace might not only exist in the imagination of a five year old.

Wordless Wednesday: Wish A Mile

The end of last week was the Wish A Mile 300 Mile bike tour for Make A Wish Michigan. There was a team riding for the Dancing Queen (well one rider, but she was considered an official team). We went to greet the rider at the end of the tour and enjoyed the day.

 

 

 

 

 

You know the day had to be good since the kids crashed out immediately after.