I have a son. He's seven and he has special needs. He is a complex boy and the list of needs that make him "special" is a long one. The fact that he is a child with special needs is obvious within the first three seconds of meeting M. Usually one of the first questions I am asked is, "What does he have?"
His diagnosis? I don't know.
"Well, have you had him tested?" Um...yes. Multiple times, in fact. And I can tell you a few hundred things he doesn't have, though.
M was six week old the first time he was examined by a geneticist She ran a battery of tests that all came back normal and clearly, M wasn't. "What do we do now?" I asked her.
"We just wait and see what he shows us. Come back in a year or two." she replied.
Waiting.
It cost several thousand dollars to be told, "Wait and see."
When M was a baby, I'd ask his specialists, "Will he walk?"
"We'll have to wait and see."
"Will he talk?"
"We'll just have to wait."
"Will he be able to live on his own, hold a job?"
"Well, we will just have to wait and see,"
Waiting.
Recently we were advised by M's neurologist to go back to genetics for more testing. When I called to make the appointment, I was told they were booking six months out. More waiting. After a quick call from the neurologist, our appointment was moved up to six weeks out.
The geneticist had two specific syndromes in mind for M. Of the two, one syndrome isn't so bad. I mean, if your kid had to have a syndrome, this wasn't the worst that could happen. M could live with it and so can we. Strange as it may sound, this is the one we are "hoping" for.
The other syndrome, if the test is positive, will be harder to digest. This is the one I have googled obsessively and have hoped and prayed and wished will not be diagnosed. Frankly, this one will suck.
I was told to call for the results in 4-6 weeks. At four weeks to the day, I called. The tests are still processing and I was told to "Wait another four weeks and call back then." More waiting. That was one week ago. I have three more weeks to wait.
Waiting gives you time to think. And I think I will give a blog a shot and share this journey with you.....
Hi S,
ReplyDeleteI love your blog and reading about your precious son, along with Miss J. I saw so much of myself and my life with my daughter...Easy? Not on your life. Rewarding? To the fullest extent. I'm glad you're sharing your story with others who may be going through what you're going through. You were fortunate to connect with such a wonderful friend who you can share...laugh...and cry with. I remember feeling that I led such a sheltered life because I was so devoted to bringing up my Miss M, along with her older brother and sister. Many years later when I went to work for a little while, I was amazed at people...at how much they lied...how little they cared about others...all without blinking an eyelash. I was in shock. I guess I'm glad that I had that experience though because Miss M enriched my life beyond anything anyone without a child like her could imagine. She also helped to mold her brother and sister into the loving, caring people they turned out to be. Keep up the good work and never cease to be amazed at the least little milestone...or inchstone as you said..that M reaches. God bless you.
I think this is a great aspect of parenting in general... the waiting to see what will happen, occur, and how we temper our expectations during those long periods. I myself do not have a child that would fall into the category of "special needs" however, I feel that your wisdom, experience and patience will be a model to all parents who find their own child unique and special and who require a lot of waiting....
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