I realize that everyone has fears in this life. But, when you have a child like Gavin, fears take on a whole new dimension. I thankfully haven't had to walk the road of losing a child to death, but I have come very close a couple of times. Gavin has had to be resusitated from near death, and this is a scary thing to have to watch! I still think about these days and wonder and worry when the next time will be.....
I especially worry when he becomes sick. He has had a cold the last several days and although he is holding his own right now, there are always thoughts that run through my mind....."Will he end up in the hospital?", "Will this turn into pneumonia again?", "Is this truly just a cold or is this coughing due to Congestive Heart Failure(CHF)?" I don't like thinking this way, but when you have spent months in the hospital with your child and they have almost died a few times, you honestly do have these thoughts!
Gavin's cold this time around hasn't produced a fever, which is a good thing, because when he gets a fever he usually starts having seizures again. But, since his main symptom is coughing and no fever, I can't help but wonder if the coughing is due to CHF and not just a cold. Gavin's heart has a significant leak in it's Mitral Valve and this can cause fluid to build up in his lungs and, in turn, cause CHF. Is his cough due to this? These are thoughts running through my head the last couple of days.
I was once told by a doctor that Gavin's heart condition was so bad that they didn't think he would live to come home again. And, if he did live, he might never live another day of his life at home, but instead have to live in a hospital for his remaining days. I told the doctor that Gavin WOULD LIVE and that Gavin WOULD come home again, because I wasn't going to have him live out his remaining days in the hospital and that I would care for him at home until that day came!
Obviously, God had the same plans that I had for Gavin, because he is alive and at home! I am very thankful for this! BUT.....I also know that Gavin's heart is not good and that an illness or CHF could put him back in the hospital or take his life at any time.
I HATE having to worry about this and having to bite my nails wondering if this will happen soon?!
I HATE feeling like there is always something bad just over the horizon and feeling like I have to be prepared and look over my shoulder at all times!
I do not constantly feel this way, but when Gavin or his brothers get sick, these are feelings that I have. I sometimes wish that I could go back to those days of innocence, when I didn't have memories of hospital days and near death situations. Of course, then I wouldn't have this precious little guy! And, he is definitely worth all the worries!
I've been reading a book called, "You will dream new dreams" by Stanley D. Kline and Kim Schive. It has been very therapeutic for me. It has stories of parents and their special needs children. If you have a child with special needs, I highly recommend it! I'm only half way through it, but so far it is great!
Here is a quote from the book that really touched me:
"Deep, abiding sadness is my constant companion, as is unending joy. Sadness for what will not be, and joy for what is - life and all the good things that can be shared, like love, happiness, friendship, and peace. There are days when sorrow weighs heavily and, thankfully, days when life seems quite typical. Typical. I no longer use the word "normal." What is normal? Normal has nothing to do with my life. I am the parent of a child with special needs."
This quote pretty much sums up what I'm trying to say in this post! Life with Gavin is full of worries, and sadness that will probably never go away. I will live in worry until he dies and I will live is extreme sadness when he does! This doesn't seem like a very promising life to live, does it? But, the truth is, Gavin has brought more "life" to my life than any other circumstance ever has! It is so difficult to explain, and you truly can't understand my feelings unless you are walking in my shoes. These shoes are very beat down, but they are also helping me to run and jump with extreme joy!
Gavin has helped me to see that my life may be full of worries and difficult memories, but also that "Life is Good" as well! This boy is here for a reason and however long his life will be, on this earth, it is a life that is so worthwhile!
"Come now, you who say, "Today or tomorrow we will go to such a city, spend a year there, buy and sell, and make a profit"; whereas you do not know what will happen tomorrow. For what is your life? It is even a vapor that appears for a little time and then vanishes away. Instead you ought to say, "If the Lord wills, we shall live and do this or that." James 4:13-15