Today I have arranged a very special Guest SPeeker*. My friend Karin has graciously agreed to share part of her story with you, a page direct from her personal journal.
As the mother of a formerly Trached and G-tube fed toddler, if anyone can read my blog and say "been there, done that," it's Karin. She is the kind of friend you like to have close to you in a crisis. She listens, she speaks thoughtfully and most importantly, she gets pissed at all the right places.
For the past eleven months, Karin has traveled a new path with her son Alex and her husband Mark. She once described how emotionally difficult this road has been. She related it to lyrics from a song that I have always liked, but now takes on new meaning. A few months ago I heard that song on the radio and silently wept in my car for my friend, for me, for every parent who dreams of raising their child in an "ordinary" world.
This is my friend Karin, she is learning to survive.
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September, 27, 2009
Being the mom of a medically fragile child was hard. Learning how to be the mom of a child who is not fragile is also hard. In some ways, it is harder than I imagined it could be.
Recently, we have taken a position in our house that we don't discuss Alex's problems with new people we meet. We are asking the world to accept him as he is, without burdening him with everyone knowing all that came before. He will lead a "typical" life, with only the baggage he creates, and he accepts for himself.
I'm learning that this is not an easy position to take, for all that we think it is the best. Mothers the world over judge one another, and by keeping silent about the road we have traveled, I have invited speculation. My child can speak, but not clearly. He drools when he gets excited. These things will pass with time and practice. They are the last of a lot of problems, and they are minor. He has anomolies in his behavior, and sometimes these raise questions in other people, but I can accept this because he will outgrow these too.
Sometimes people say things that cause me pain, and they have no idea, and they have done nothing wrong by doing so. But if they knew where we had been, they would never have said such a thing to me. They would never tell me, "Your child will eat when he is ready." Or, "Drooling is unsanitary, and you should be sure to wash your hands as well as the toys, please." Or, "Your child seems to have some allergies [or food sensitivities], have you checked it out?" These are well meaning phrases, but they hurt. I want to say, "Don't presume to talk to me about my child. You have no idea what we have been through."
But still, I'm silent. Mark and I have talked about it, and we think it is for the best that we face the world as a typical family, and accept that well-intentioned platitudes or instructions will hit sore spots, and this is our cross to bear, and that we will have to try to find a way to have a thicker skin.
Last night, though, I was reminded of how far we have to go yet before we can truly be a "typical" family (whatever that is). Yesterday my son came down with a cold. A few months ago, this would easily have meant a week or more in the hospital, lots of medicines, and very little sleep. Now, it is just a cold. He sniffs, he cries, he wakes himself up tossing and turning. A cold.
For me, though, I listen to him breathe each breath on the monitor, and I wince when he snores too loud or gasps and tries to clear his nose. I tell myself that everything is fine, but I know I won't sleep well.
You see, most parents have the liberty to put their children to bed and trust that their child will be alive in the morning. I do not have that faith, even now. For my son, there was no guarantee he would live until morning. Now, this is true for everyone, but it was more true for him than most, and I knew it. Every day of his life, I knew it. I knew he might die one day, no matter what I tried to do, and it would be a tragic waste of a life so full of promise.
All of the danger started the day he was born, and when he was three weeks old, we consented to have him trached -- a surgery that would bypass the defects in his airway and give him time to grow. At the time, that is all we thought he would need. That night, after the surgery, something went terribly wrong, and our little boy almost died. He was a full term, otherwise "normal" child, with some minor birth defects that would hopefully disappear or be repaired within a year. At the very beginning of the steps to help him, he almost died. If it weren't for a very quick thinking NICU neonatologist, my son would have been gone or severely brain damaged by morning.
At that time, my life changed. From the moment we heard the doctor call in the wee hours of the morning to talk about our son, I have never slept well again. At first, we had monitors to watch his oxygen levels, and strangers in the house all day and every night in case something went wrong. Then we had just us, staying awake all night and all day because our nursing agency could not staff all the hours we needed. I never was able to "sleep when my child slept" unless there was another person in the house watching him. If I were to sleep, I might wake to find him gone.
As things improved, we lost the need for daytime care, but we still needed help at night. The monitors seldom worked as well as they should (they often said he was dying when he wasn't), and we had to keep our eyes on him all the time. This meant long days and nights when staffing was short.
Finally, the staffing problem was bad enough that we had to stop altogether. With the doctor's consent, we struck out on our own. We finally had a monitor that worked well enough, without more than 1 or 2 false alarms a night), my son had grown enough that we thought if his airway was compromised, he would struggle to breathe and try to save himself, hopefully waking us in the process and certainly setting off the alarm.
Then we had the surgery that removed the danger at last. Overnight, more or less, it was gone. The recovery time in the hospital was very long, and very stressful, but there was joy at knowing that our lives had changed completely, again. But mothers and fathers that have stood watch against Death for 20 months can't turn it off easily, although I think we've done very well.
I know some day this will be as far behind me as it seems to be for my son. For now, I listen to him breathe. I check on him many times a night, and I never seem to silence the lingering worry in my head.
Someday, I hope to put my child to bed, confident in the simple faith that we will all wake up in the morning.
I wonder if I ever will, or if I will always have that small node of fear. "Mr. and Mrs. K_______, this is Doctor B____. We need to talk about your son."
Karin is a lawyer turned stay-at-home mom living in the Washington, DC metro area. In her prior career, Karin practiced law at a major national law firm. Now, with the economy still recovering, Karin has entered the blogging world with her humor blog, It's All Good if You Can Laugh. Karin says that humor got their little family through some days that are hard to imagine, as did family, friends, and an unbelievably warm and loving on-line support group. Her son, Alex will be celebrating one year Trach free on February 17, 2010.
Thanks for peeking,
*Yes, yes I know that is an intentional misspelling. Does that work for you? I was toying with "Guest Sneaker", but I figured the shoe imagery would be too weird.
