Sunday, February 16, 2014

Time To Make A Wish. . .

After a several scary episodes, after several years of unpredictable trips to the hospital, after 3.5 years of hoping the TPN will only be temporary, after attempt after attempt to use a GI tract that is defies logic. . . we are asking for a referral to Make-A-Wish.  I knew "one day" Sergio would get a wish.  I had only hoped it would be when he was much older so he could be more communicative on what he would like.  Not knowing the future or how the unpredictability of his many issues will play out, we feel now is as good a time as any. 
One of our scariest stays yet.

So, what do you say to the wish granters who want to help "build" a dream come true for a child that can't speak.  Anyone that knows Sergio, knows he can most certainly "communicate" and does so all day long - from yelling at you when you tell him to get out of the sink, come down from the top of the stairs, get out of the toilet, etc, etc.  To when he asks for his brother, Cody, to get into bed with him and play monkey.  To when he requests very specific things for YouTube (Spider-man Potato Head, pumpkins, babies, etc).  Yet, how can he tell the wish granters what we KNOW he'd want to if he could. 

Peter and I talked a long time and we realized that Sergio's wish isn't something concrete.  It isn't a specific trip (he loves Potato heads - but only in so far as he can bounce them, not actually dress them and such).  It isn't meeting someone.  Those are the categories listed on their site.  After a great deal of thought, throwing ideas into the hat and dismissing them almost as fast, we realized Sergio has shown us what he would love.  A VACATION!  One of the happiest times we've ever seen Sergio was last summer on our trip to Lake George.   He had never been on a trip with us up until that point.  He LOVED the hotel.  He slept in bed with me every night.  He LOVED the boat ride.  He LOVED the many different places we went.  He LOVED being away.  We had the best vacation ever and it was only 3 short days long.  Every one of our child loved the experience and we feel this is what Sergio would like and want if he could ask. 
Sergio LOVING the boat ride!

He can't fly, he can't go in water, he can't withstand heat, or cold, he can't be far from hospitals and he has to have the ability to get out and move regularly.  We have to travel with 3 wheelchairs, need a refrigerator for TPN and meds and storage for monitors, medical supplies for all of the children, and car seats for two kids.  Sounds like a road trip to me!  A larger RV type vehicle that can fit all of us and our equipment with plans to stop along the way to stay at hotels and maybe even an amusement park during the time of day Sergio is most inclined to enjoy it. . . is perfect. 

I couldn't talk about it without tears when we first broached this subject.  I found myself seeing it as yet another leg of "finality" in his overall journey.  Now, I feel very different.  I know this is something Sergio will truly love, as will the rest of the family, as we make amazing memories together.  He will be a part of something we would never be able to do on our own and our family will be whole, happy, and free to be so. 

I pray hard that the wish granters will see what we see when we look at those pictures of last summer.  I pray they will listen to Sergio and his sweetness and look at the complexity of his needs and realize that there isn't a "package" that he can be a part of.  I pray that they understand the number of factors that complicate his ability to participate in so many of life's activities. 
A little sister and Sergio time in the bed at the hotel.  

The referral will go in this week.  I am now excited and see this as the amazing opportunity it is.  I have faith that all will work out and that Sergio will make memories, have fun, live a full experience that he would otherwise not be able to participate without the help of Make A Wish.  To me, that is the very nature of their mission. 

With Love,