As I write this, we are currently battling an as-yet-unknown "bug" in Madi's digestive system. We are not sure whether it's some kind of infection or her body saying it doesn't like her new immunosuppressant medication. Then again, it could be something else entirely-diarrhea "just because." In any case, trying to figure out what's plaguing this poor kiddo's stomach has turned me into a pseudo poop scientist/lab tech. Yes, that means exactly what you think it means... scooping "samples" from diapers, putting them in various cups and tubes, and then refrigerating or freezing them per doc's orders till the following day when they get dropped off at the lab. I bet you are SO jealous of me right now.
But as any good parent knows, you will do anything for your child to make their owies better. So I gag my way through, and try to think of things other than what I am doing.
One of the main things I have been thinking about lately is dreams. As in, dreams for my children. When Madi was born I had plenty of thoughts of all the big things she could do in life. Then when things went down the crapper (pardon the poop talk, it's hard to get off the brain) my only dream was for her to survive. And look at her now! She runs, jumps, colors, and does most of the things that "normal, healthy" children do. I know that her life will never be like others' her age, but that's really okay with me. My dreams for Madi are a bit different now-that she can overcome her developmental disabilities and continue to learn and grow every day. That she goes on to make lots of friends in life who respect, understand, support and appreciate her. That she is a respectful, kind and helpful member of society. I hope that she understands that it's okay to have a "pity party" for yourself every now and then, but also realizes that life is good, and you have to appreciate what you do have instead of lamenting what you do not. I also hope that she uses her experience with heart disease, stroke, transplant, and developmental issues to be a source of comfort and education for others. I certainly do not expect her to be a CHD/organ donor crusader like me, but I would honestly be thrilled to death if she chose to do so.
Life after transplant presents a whole new Pandora's box of issues, no-no's and what ifs. In the journey we have taken in the world of organ transplants, I have come across many instances of teens refusing to take medications, of post-surgical depression, of feeling left out because of the restrictions transplant meds make on your life. I dream that someday medical science will acheive the goal of medications that protect from rejection without the added restrictions. I hope that as Madi gets older she understands the importance of taking her medications and not giving in to societal pressures to drink and do drugs. Hopefully since she has been taking medications for as long as she can probably remember, it will help in the future since it will be just a way of life for her.
I know that I am getting ahead of myself. That her adolescence is far away still (Thank the Lord!) and that these things should not be on my mind. And usually they aren't. The little bothersome anxieties and paranoias only come around every now and then, and usually only when a new situation (such as collecting poo samples) arises. I can't help that it gets me to thinking about how different life is now. About how so many people I know-sadly, a lot of the people I am referring to are family members-are so very ignorant about transplantation. They seem to think that life is hunky-dorey now, and that I am being overprotective, paranoid, etc about all the things Madi can and cannot do. To them I say that ignorance is curable. If they only took the time to educate themselves, they would see that I am giving Madi the very best of life, in any way I can. Because no matter how many poopy diapers I change, or how many times I get vomited on, no matter how frustrated I get with feeding issues and developmental delays, I have Madi. Here and now, in this moment, my daughter is a bright-eyed, pink-skinned, loving, curious, sassy, sweet girl.
That, my friends, is the best dream of all.