everything is possible... the impossible just takes a little longer

slow and steady wins the race

Thursday, October 1, 2009

hi ho hi ho it's off to Disney we go...

We are counting down the days until Sam's wish trip. I am excited and apprehensive and excited. On one hand I am thrilled that my family has this opportunity, while on the other hand I cringe to think about what it really means for Sam to be a "wish child". As wonderful as this experience is, no one really wants their child to be damaged in anyway enough for them to receive such an honor. I didn't want Sam to be a "wish child", I didn't want him to be born severely premature, I didn't want him to have open heart surgery, I didn't want them to remove his entire large intestine, I didn't want him to be only able to eat through his g-tube, I was angry when he was diagnosed with Infantile Spasms, I cried when he learned to walk at the age of 5 1/2, I didn't want to "live" at the hospital for his first year and I hated having oxygen tanks stashed all over the house. I didn't want Sam to be born with and extra chromosome but when it came right down to it... I wished that he ONLY had Down syndrome. I worried about Andrew... and although I was so impressed with his maturity there is just something just wrong about a 3 year old knowing how to silence the alarm on a pulse-oximeter and program a feeding pump.

Over the years, Sam has been granted a Wish twice in the past... and twice I turned it down. Initially I was angry. Very Angry and hurt. I actually choked out the words when I asked his nurse if the real meaning of Sam being granted a wish was the Doctors passive-aggressive way of telling me that there was nothing more they could do and that they were quietly giving up on my child. I felt defeated. I was not in a good place to hear what the well meaning wish granters had to tell me and through hot tears I turned them away.

Several months later I was in Sam's hospital room waiting and hoping for a miracle. Sam had been diagnosed with Infantile Spasms. This diagnosis came like a sucker punch. Sam's newly repaired heart had given us a new little boy, a pink, active little boy who was starting to roll over and hold up his head on his belly, drink from a bottle, eat cereal and could for the first time in his life... scream. We were thrilled that he finally had the energy and stamina to scream. However, there I was sitting in a hospital room with a quiet little boy who had all the wind just sucked out of his sails. I wanted my happy baby back. He was not even able to make eye contact at this point and I was angry that all his hard work was gone in flash and the only meaningful movements that he was now able to do came in quick clusters of myoclonic "jerk" seizures.

So here, in this room I waited.

When I was told that treatment was to start immediately, and it was unlikely that my insurance would cover this miracle drug, I wept. I was to find out later that it would be covered but it was in this impossible waiting place, not knowing if my child would get the treatment he so desperately needed, that Sam was granted a wish for a second time. Desperate, I agreed to listen to what the wish granter had to say. I do not know who sent them or where they came from... they just appeared. It felt like only seconds had passed from the time I was told that my son had a rare and life threatening form of epilepsy to the time the wish granter appeared in Sam's hospital room. Nothing punctuates the severity of your child's condition when Make A Wish pays you a visit before you are even discharged from the hospital. I can remember asking her if Make A Wish could cover Sam's $10.000+ dollar medication. She very nicely told me no. I agreed to listen to the rest of her spiel, but it kept sounding more and more like a timeshare offer. Here I had just bled my heart out to her about how we couldn't afford our child's medication (and I remember being annoyed thinking that she didn't hear me) and although it sounded nice...where in the hell did she think we were going to get the money to pay for this amazing once of a live time vacation??? I stopped her and said that we were not interested. I never did hear the part about it being no cost to us..... but I seriously doubt that at the time I could have.

Jump a few years ahead and we have rejoiced with several of our friends who have had amazing Make A Wish experiences. All of whom ask why Sam was never granted a wish. After telling them that he was actually granted 2 and I turned them both down, I thought they were on the verge of hosting an intervention. They filled me in and I realized that not only was I about the densest parent there was but that I was really denying my children a wonderful opportunity far beyond anything that we could do for them. After about a year I finally was able to put down my own hang ups and put down my pride and come to terms with the fact that this is not about me... it it about the boys...it is all for the boys. So I took a deep breath, I logged on to www.wish.org and I nominated Sam myself. GULP. DOUBLE GULP. To my surprise I got a phone call from Make A Wish almost immediately. I think they must have people just sitting there waiting to jump on the phones as soon as emails come in. And wouldn't you know it... Sam was still in the system the process had begun. This time I welcomed the wish granters (Deb and Bill Motzer) into our home and hung on every word they had to say. This time I experienced an entirely different set of emotions and instead of feeling raw and exposed I was overjoyed and deeply touched by the gifts that were being presented to Sam and our family.

I will admit I have felt a bit of guilt... all considering Sam is doing sooooooo very well and does not fit my preconceived notions of what I thought a wish child was (ie he does not have a trach, or cancer, or a transplant etc). A child only needs to be living with a life threatening condition... not be terminal...to qualify for a wish. AND every child who qualifies for a wish is granted a wish. Because one child gets granted a wish it does not mean that a potential wish is taken away from another child. Wishes are not granted based on financial information, need, or other factors.... only the fact that the child is living with a life threatening condition. A parent, doctor, nurse, therapist, teacher or para professional can nominate a child. To this day I do not know who nominated Sam the first two times.

So as I begin packing for our amazing Disney wish trip, I find myself thinking about all the things that I will NOT be packing... like tanks of oxygen for example. I am so excited to see the looks on the boys faces (well except Sean because he will be scared to death...LOL) when they see Mickey Mouse and the other characters. Sam loves Cinderella and I can't wait for him to see her castle. I can't wait for them to just be kids... not sick kids or kids with a sick brother... just kids at Disney. We are driving (our choice) and so I raided the dollar store and now I have a secret stash of goodies that I will pull out when a crisis arises. And you know that you really have not lived until you have driven 20 hours in 2 days with 3 children... needless to say I am planning on a few melt downs, lots of laughs, big smiles and one happy family.

So with all that being said... I am so excited to be taking my kids to Disney and for our family to be taking the trip of a life time. It is humbling to admit that this is something that we could not do for them on our own... perhaps in time but not right now, right now while they still believe in all the magic of Disney. I am so thrilled that Sam will be able to walk up to meet Mickey Mouse under his own power on his own two feet. And I am over-the-moon about all that the Make-A-Wish Foundation does for special kids and their families.

Blessed and Lucky are we!

3 comments:

Heather said...

Sam and the rest of you,all deserve this trip.We are over joyed that you will be venturing across the country to meet Mickey and all his friends.We are over joyed that Sam is in a place that he is doing so well that he can soak in and enjoy every moment of this wish.I am just finishing a post tonight and Sam and his journey are part of it.As I have said countless times before,you all have been a lifeline and a source of inspiration and hope for our journey with Zoey.Infantile Spasms rocked our world and you were there,shining a beacon and reminding us that slow and steady does indeed win the race.We SO could have done without the leukemia diagnosis but hey,when Miss Zoey does things,she goes all the way.We will be thinking of you all and sending all our prayers and good vibes for an incredible,memory packed trip.Love to you all.

Leah said...

I am so excited for you!!!! As you know, Angela was granted a wish as well, and almost two years later we're still feeling it! Seriously, until you come back from your trip you cannot begin to imagine what's ahead of you! Please give Mayor Clayton and his wife a hug from Angela!

Angela said...

RaeAnn, thanks for letting us see through a window and into your life for a moment, if only peripherally. I think the timing of this trip is perfect. Andrew is old enough to remember, Sam can walk and experience it in his own way, and Sean will be able to look at photos (later) and hear stories of how wonderful and fun it was. God is so very good. Have a WONDERFUL wish trip!!