The way things work with Make A Wish is that there has to be a referral by either a parent, social worker, or doctor. When I called them they took my information and then got his doc information. They called the doc to verify that he was indeed a patient and that he qualified for a wish. Qualifying means that he has a life threatening condition i.e. a progressive, degenerative or malignant condition that has place the child's life in jeopardy.
They called me back yesterday and said that they had contacted the doc's office and that Kayden does qualify. They got some information and then said that they would contact his wish volunteers, they are the ones that will manage his wish and everything along with it, and they will then be in contact with us in the next few weeks. At that point Kayden can then go to the Wish house and make his wish.
Kayden is so excited he wants to go to Disney Channel and see Buzz Lightyear. That is all he has been talking about for the last few months is going to Disney Channel. He kept asking me when we can go to Disney Channel. This is why I contacted them.
I know that there are people who think that now that he has received his transplant that he is just fine and that he doesn't have any more problems. Well that is not exactly true. His chance of rejecting and something going wrong is very real and very likely. He still has a chance of needing dialysis or another transplant. His medications make him more susceptible to certain cancers and because he received a kidney transplant he is susceptible to the BK virus which is only seen in transplanted kidney patients. Every virus, every rejection episode, every illness lessens his compatibility with future kidneys. Just because he has a transplant doesn't mean that his life goes to normal and that we don't have to worry about anything.
We have been very blessed that Kayden has done so well with his transplant. There isn't a day that goes by that I don't look at him in amazement with the things that he does. There is still a whole lifetime of unknowns for him because of his disease.
There is a kid at work that is waiting for a kidney. I see him everyday and my heart is so full for him. He gets tired so easy, he has a hard time accomplishing every day things because he is sick. He has a catheter for his dialysis and he hooks up to it every night. Some days are better than others but more often than not he just doesn't feel good. He doesn't know what it is like to feel "good" since he has been sick so long.
I think that people forget that while we think that our problems and struggles are hard, and they are, there are others who are struggling and have problems too. No one's problems and struggles are worse than anyone else's because to that person that is suffering through them it is still hard for them. The Lord will only give us as much as we can handle. Some people can handle more than others and it is never our place to compare that our struggles are worse or more important than anyone else's. It doesn't get us further along or extra points in life if we sit here and complain about our problems.
3 comments:
Since I am the "people" you are referring to I would like to Clarify that I don't think he is just fine. I understand he has a life long condition. My "issue" Is that it seems never recognized by "other" people that while your condition is life long it is in "remission" of sorts. That you don't wake up every day and and attend therapy of some sort or have procedures every six weeks other than your transplant clinic. That while the rejection MIGHT come at some point, others a breaking SOMETHING WILL happen.
While the conditions are far from similar the feelings could be the same though a more "normal" life is seemed to be had when a transplant has occured. It has not made him physical disabled, blind, mentally handicapped or what not. Does it diminish his problem. NO but it doesn't make ANYONE ELSE ANY LESS HIGH RISK THAN YOURS JUST BECAUSE THEY DON'T HAVE A NEW ORGAN OR DON'T TAKE REJECTION MEDS.
Nancy,
You are right in the sense that we are in a lull right now. We don't have much going on as far as his kidneys are concerned. But were did have things going on. I did have therapy once sometimes twice a week. We still have our blood drawn on a regular basis and sometimes even more depending on how his levels look. We have to have blood drawn every 4 weeks and sometimes sooner than that. He is currently being monitored for the BK virus since it has shown up at high levels in his urine and we have to have his blood tested for the virus. He has had to have speech and occupational therapy. I had to put him in a stander for an hour a day so that he could strengthen his legs. I have had to do all of that. I had to inject my child with growth hormones and iron shots so I have had to do some very hard things.
You are right that right now we aren't living it on a daily basis like you are, but that doesn't mean that someday we won't. Just like any other child you never know what will or can happen. Yes, you are living that right now and it isn't fun, but it doesn't mean that you are better than or that my child is any less loved or cared for than yours. That is where the feelings come in.
I understand what it is like to have a child that cannot move around very far, my child didn't have casts on his legs but my child was hooked to a feeding pump and couldn't go very far. He had a three foot radius that he could go in and that was it. I know what it is like to have a child that won't eat, I go through that every day right now and we have been going through it for 5 years. It doesn't matter what the child's condition is there is sympathy and empathy. Circumstances are different but the feelings are the same. It isn't fun and hopefully you guys will be able to go through an easy time like we have been through lately. Sometimes when you are in the middle of the storm you can't see the calm ahead, but it does happen. While we were in the middle of appointments and therapy and not walking and not even being able to look at food I thought that it would never end. Everyone kept telling me it will change things will be different but I never believed them while I was going through it.
Believe me I understand and I hope that you will understand also.
I was thinking alot about the differences and how to explain the differences so that we all feel that we are being understood. I think of Kayden as more medically fragile while I think of Tyler as more disabled. Yes he has a shunt that makes it "medically fragile: but only when it is broken. Meaning it is not something I think about every day. I only think about it when it needs repair or broken or we need follow up. Where as a disability is daily.
both need medical care above and beyond what is "normal" the medically fragile ( mine and yours) seem to only be "thought" about come the time they have to be dealt with. The disabled is the one that requires adaptaions everyday. ( again not in a sick way, just a life changing we can do it way.
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