It all comes down to me…?
“Do what you feel is right. Follow your gut/instincts. You are the parent and you know what is best for your child. You know him/her better than anyone else.”
Parents raising children with special needs hear this a lot from everyone, even each other. For the most part, the advice is good and true, and I follow it. There is no one who knows my child better; I’ve been by his side every step of the way, and asked all the questions that I knew how, and read up on journals and blogs and researched on the internet until my brains made me cry (so listen to me when I voice my concerns!). As a parent, sometimes, I just know what is right or wrong for your child because I do.
As well meaning as the advice may be, it also places immense pressure upon the parents’ shoulders to try to make the “right” decision. I mean, what is the right decision, anyway, when either way you look at it, you have a chance of losing.
This is pressure. If I really think about things this way, that Justin’s whole life is dependent on the decisions that I make for him, that is A LOT of pressure.
For example, deciding whether or not to enroll Justin in a group program was one of those times when the “right” thing to do was not so clear. Given his CHD and asplenia, I wondered if the benefits of the program were worth the germs (and viruses aka H1N1) that he’d be exposed to at the preschool. Of course, with my desire to instill a bit of normalcy in my child’s life, and given the cardiologist’s green light, I decided to give it a try. I’d heard many good things about the program, and wanted to give Justin the opportunity to grow cognitively.
If all goes well, then I’m a good mother for taking such risks. But, if devastation occurs (I’m not being dramatic, it’s a reality), then I am all to blame.
But, you know what? Along this journey with Justin, I’ve learned to relinquish the control that I thought I had over my life and my child’s life. The reality is, I never really had any control to begin with. Life will come as it will, and all I can do is trust in the Lord. I recall planning Justin’s arrival down to the tee. I wrote a step by step plan as to how I wanted Justin to be handled, and where he would go. I chose the surgery date and hand picked Justin’s cardio thoracic surgeon. I prepared myself for Justin’s arrival by reading medical journals and blogs about what to expect after his first open heart surgery. I looked for glimpses into the lives of children with CHD anywhere I could find it, mostly on the internet. I came into the game with my hopes held high. I thought I knew.
What all my researching and planning and reading didn’t tell me was what would happen to Justin. It didn’t tell me that he would suffer from complete heart block that required him to get a pacemaker, or that he’d flatline two times in a day after his heart catheterization or that he’d bleed after surgery, or that he’d suffer a stroke. I wasn’t prepared for those events because those things were not supposed to happen…at least, not to my child, I thought.
As those events unfolded one by one, we found that we were without control, as were the doctors. They could not agree as to why Justin’s rhythm was so intermittent, and why he suddenly came back from flatlining for 8 seconds, then another 30 seconds. When the doctors didn’t seem to understand, I knew there was no logic or reason left in Justin’s journey, that all our trust had to be in the Lord.
I am taken back to that day when I saw Justin’s blue and lifeless body lying in the hospital bed swarmed by a team of medical professionals whenever I have a difficult decision to make for him. Both times, he came back, on his own without resuscitation. I am reminded that I can only make a decision based on what I do know, and the rest I must trust in the Lord.
Here is an image I found on a blog that I follow. This piece of art titled, “Chief of Staff” by Nathan Greene, really speaks to me.
As difficult as it is to hand my child, my life and blood, over to strangers, I find peace in knowing that the Lord is by the surgeons’ side to guide his hands.
September 30th, 2009 at 9:59 am
I know some of those fears, even though I have a healthy almost-2 month old. I can only imagine how magnified they must be when you know your child has challenges.
I applaud you for not being the sort of mother that treats your kids like they have more limitations than possibilities. There is so much joy, even for me, in watching both of your boys discover their potential, and so much of that comes from them having parents that support their growth!
September 30th, 2009 at 12:12 pm
Jennifer, I LOVE this post. It is a good reminder for me. I sometimes get so caught up in the worry that I forget who is really in control. HE has a plan for my child (and yours, and everyone else’s) and I just have to have faith in that plan. It’s as simple as that! Now, if we could just shut our worrying-mommy brains off, right?
Thank you for this post! I love the Chief of Staff painting.