Make-A-Wish

Maggie’s health issues have been dramatic throughout her life. The 70 surgeries she has had to endure have affected almost every part of her body. Some of those were scheduled and we could prepare ourselves (at least in theory). But most of them are emergent and need immediate intervention. For these we drop everything and run to the hospital. Happily that hasn’t happened in a while {knocks wood}

The bulk of Maggie’s surgeries have been for hydrocephalus, or water on the brain, a condition she developed at 6 months of age. We all produce fluid in our brain, and Maggie is no different. However, for her and others with hydrocephalus, the fluid does not drain properly and builds up in the brain which is, (without going Latin on you) not good. She had a shunt, which is just a tube that works as a drainpipe of sorts, placed in her brain to take the fluid to other parts or her body.

Many people have a shunt placed and never have another problem, or perhaps several years down the road, something happens and it has to be replaced once or twice. Not my girl. There have been over 50 surgeries to correct, replace, deal with infection, repair, etc.

For Maggie the problems seem to come in groups; hence, the 50 surgeries have not been spaced evenly over a period of her 15 years of age. Right now, we are enjoying the longest streak ever without a problem; it has been four years and everything is smooth. {Again with the wood} She had one other good long stretch like this about 10 years ago. Occasionally there has been a single surgical repair, but generally, the surgeries come in waves of three, or five. In two particularly bad periods, there were 8 or 10 surgeries over a 90-day period.

It was after one of these terrible periods of repeated surgeries and emergencies that Maggie was referred to the Make-A-Wish Foundation. If there is anyone out there who is not familiar with Make-A-Wish, I suggest you check it out. They are in the business of granting wishes to sick and dying children. This is not about getting medical equipment or helping with bills. It is about letting a sick kid, who often does not get to have much fun or exercise any control over their life, choose one thing, pretty much whatever they want, and this foundation will see that it happens. It is an amazing organization and being on the receiving end of it was incredible.

This was three years ago. Maggie did not have the abilities to convey her wishes as she does now. It was difficult to ask for something when the Make A Wish people came to the house. It was supposed to come from Maggie and we were in a position to choose for her. Son #1 (the bicycle enthusiast) thought she wanted the whole family to have new bikes, and son #2 thought season tickets to the Giants would be right up her alley. Negative on both.
I just wanted to make a travel wish because it was so difficult for us to travel because the planning was so daunting. If someone else was doing the planning – bonus! In addition, I knew that Maggie’s favorite thing was hanging out with all of us together. As the boys were aging that was getting more and more difficult, thus a trip would serve that purpose as well. But where? We had done Disneyland and it was too much for Maggie. The beach is not a welcome spot when you have a wheelchair user. Hiking was obviously out. Where should we go?

Steve really channeled what Maggie would like to do. Maggie’s favorite thing in the entire world at that point (and maybe still) was listening to someone read the Junie B. Jones books. (see:Maggie World: Manners/Greetings)When that someone was her dad, she was in heaven. Steve suggested we travel to meet the author of the books. It was perfect. A weekend in Arizona in a nice resort meeting the GENIUS behind these books that had been the source of so much joy was perfect. Sadly, because of her own health issues, the woman could not do it. That was unfortunate, but if anyone understands how health issues control your life, it is my family.

We ended up on a three-day cruise to Mexico. Maggie had the time of her life. Because it was a cruise, the boys were with us the entire time. They had one room and Steve, Maggie and I shared the other. This is not something I would ever choose to do but it was the perfect wish for Maggie. The Make-A Wish people took care of everything. We were picked up in a limo, taken to the airport and shuttled to the ship in Los Angeles. Everything on board the ship was taken care of and they gave us spending money as well. We got VIP treatment, even touring the bridge.

Maggie had a great time blowing the ships horn and really how often does a girl get to play shuffleboard with her cool brothers. Best of all, though, we spent time enjoying each other’s company in a relaxing and care free environment.

Looking back now, I appreciate it even more. That trip was in 2006, shortly before #1 son graduated from high school and left for college. In 2007, Maggie was sick again and had to get the tracheostomy. Travel now is impossible. There is just too much equipment. The timing was perfect for her health and it was the last time we really spent time alone together. It was all we could wish for.

What is your one wish?

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