Several months ago it was suggested by Sophie’s Early Intervention coordinator and her Special Instructor that she be refered to the Make a Wish Foundation. At first I was surprised at the suggestion but at the same time it got me thinking about what could happen to Sophie. To possibly have the opportunity to give her a family trip that’s all about her planned especially around her would be something we would always have together, but the thought gave me mixed emotions. My husband felt the same way but I decided I would bring it up to the pediatrician to see what she thought about it. A few weeks later at our follow-up I told the doctor what had been suggested and she replied “yes, absolutely”. She reminded me how precious Sophie’s life is and told me to go forward that she would be waiting for the paperwork.
The process went pretty fast and before we knew it we received a letter in the mail stating Sophie had been approved for a wish, we were happy then very sad. The realization of why our daughter was getting this wish was really tough to swallow. She has severe medical complications that can lead to a limited life span, yeah that’s not something parents ever want to hear about their child. We did not think about it and before we knew it we were meeting with a wish team to discuss her wish. Two wonderful women who arrived at the house with a Mickey Mouse for Sophie which she absolutely loved and goodies for the kids. We had been in a debate between a trip to Disney and a Disney Cruise. Sophie is a sensory needy child and she absolutely loves the Disney characters and Tinkerbell so there was no doubt Disney would be our choice but which Disney trip was the debate. While some suggested the cruise I just was not really feeling it. Don’t get me wrong it’s an amazing trip we’ve been twice in the past but for her it’s just not right. First of all having her on a ship with a ton of people for days and days breathing the same air is a mine field of bacteria that I do not want to venture in. Then there is the chance that she is not feeling it and we can’t turn around once were out. So I decided Disney World would be best. She loves to be outdoors, she is a ride junkie. Can you imagine I can spend the day going on kiddie rides with her she will be in heaven! If it’s too much for her I have a better chance to turn around and leave with her. And we will be staying in a place designed for children with special needs ready for any emergency. So it was agreed Disney World would be the best place for her. So we planned it for December because she does not sweat and the heat can cause an asthma attack and it’s just safer to have her in cooler weather plus she will be a little older and I want her to have the best time!
During the whole discussion and planning of the wish I tried to keep myself together but I could not and found myself crying more times than I’d like to admit. It’s not easy to talk about your child’s health and all the times you thought she would not make it through. It’s not easy to hide your pain. My pain was flowing through all of us there that day, imagine seeing your pain in someone’s elses eyes just by allowing them into your heart. They left with heavy hearts that day, I’ll tell you I don’t know how they do it. Come into someone’s life in such a difficult time to offer happiness and hope but you can’t walk away without carrying on some of those families heart ache. To meet and instantly love these special children and know that at any moment their life can be stolen from them. These volunteers are really wonderful!
How I feel right now is very mixed. I am looking forward to this trip, to see the endless smiles of my children’s faces. I look forward to seeing Sophie floating in sensory heaven and knowing that we will have this memory always. But at the same time my heart breaks into a million pieces knowing that my child can be taken from me at any moment. That taking this wish trip has made us accept the truth, our heartbreaking reality of the severity of my child’s health and life threatening illnesses. My husband who rarely shows emotion when it comes to Sophie has cried and on several occasions and has told me “I’m scared of losing her, I don’t want to think about it”. This Wish has forced him to open up to feelings and fears he has buried for the last three years and he just does not know how to handle it. We are scared but we also know that we are doing everything humanly possible to keep her here with us. We do not know what tomorrow holds, live today as if it’s your last day. Is that not what they say? Well that is what we are trying to do enjoy life to the fullest and give our daughter, our children the happiest minutes, hours and days possible.
We will be staying at Give the Kids the World a non for profit story book resort specially for children with life threatening illnesses. My husband did not want to stay here feeling it will be too much of a reminder of why she is getting this wish. But I don’t see it that way I see it as a more suitable place for her needs as it is equipped for her needs. I know seeing other special children will be difficult but this is part of our lives now.
Now that we have relocated to North Carolina I am awaiting a call back from our new wish team to get the ball rolling. It’s the strangest thing to feel anxiety, excitement, happiness and fear at the same time. Overwhelming does not sufficiently describe these feelings. Maybe there are just not enough words to describe them. I pray a lot for strength and will contiue to do so.
I will keep you all updated.