Greetings, everyone. This is Ellen, mom to Max, 6, and Sabrina, 4. A little background on how I got here: Max had a stroke at birth. Doctors told my husband and I that he might not walk or talk. That he’d have mental retardation. That he could have hearing and seeing problems. Basically, every nightmare you could think of.
The brain damage resulted in a diagnosis of spastic four-quad cerebral palsy. It makes talking hard for Max. Chewing, too. He has a lot of trouble using his hands, particularly his right one; even holding a spoon can be a challenge. And sometimes his legs get a little stiff.
But.
Max can walk. He can say a bunch of words (and has a speech communication device he loves to use). He sees fine, he hears fine. He’s bright, he’s determined, he’s social. He loves Lightening McQueen, chocolate milk, singing, Thomas trains, sweet and sour soup and teasing his little sister.
I wish the doctors from the hospital where he was born could see him now.
I actually Googled one of them the other day, a young neurologist who was so kind to us. He’s moved to another state. While the older pediatric neurologist and the neonatologist kept telling us the worst, Dr. P. gave us hope. He said that babies brains are malleable. He advised us to get as much therapy as possible. He showed us the MRI scan of Max’s baby brain and explained in detail just what had happened. He understood we’d just been through the shock of our lives. He was kind.
I haven’t reached out to him since 2002 because I’ve locked away the two-week period when Max was in the N.I.C.U. But writing about Max’s history has really got me thinking that doctors like Dr. P., the humane doctors of this world, deserve to hear from the patients they have helped. I’m sure he probably doesn’t even know how much he did for me, because I was such a wreck during that time.
I just took a break from this post and e-mailed him. Let’s see if he writes back.
Do you tend to get all emotional when you talk about what happened to your child? I sobbed when I wrote this post, and it’s been six years.
I blog daily over at To The Max, come visit sometime. I’ve got a lighter side, promise.
While I didn’t experience nearly what you went through, my daughter was born a prematurely at 31 weeks. Those first weeks of her life were terrible but just this week we celebrated her 5th birthday and I was a wreck. I blogged about it and talked about it with everyone I knew and there was not a day during that week that I didn’t cry! Your post has inspired me to do that same with some of the nurses that took such good care of us those 5 weeks we were in the hospital. I could not have done it without them! Thanks!
He must have been a very special person indeed to give you encouragement in what I would imagine would have been one of the blackest times in your life. I have a little fellow in my class who is very like your Max. I was getting teary by the end of your post too. It hasn’t put me off clicking onto the link to your site. Thanks for sharing your story.
Yes, we have experienced doctors like this. In fact, most of the doctors we have dealt with have been encouraging. We are lucky that way. My son, (7 tomorrow!) William, had a stroke when he was 15 months old. The neurologist was incredible. He told me we had every reason to believe he would recover well, even fully. And then there was a doctor at the hospital who helped diagnose William’s trauma. Ironically, he is now our family doctor. When we became patients at his practice, I had no idea it was him until we met, and he remembered us. I posted about it on my blog, here is the link if you’re interested….
http://nosmallthing.wordpress.com/2008/07/25/just-look-at-him-now
I hope your doctor responds. I know how much the doctor-patient relationship means, and how nice it is to hear from a doctor that touched you with his/her encouraging words.
We need more doctors like that in this world; I don’t think many of them realize just how much a positive outlook and a little hope can help parents who are trying to deal with tragedy and the unknown.
And, by the way, feel free to show us all your sides – this is a great place for that!
Yes, Dr. P was a very special doctor, indeed. Would you believe he’s out of office for the next two weeks? I will update you if he writes back. I think good doctors do deserve this recognition (no matter how long it takes to get back to them)! Tina, glad I inspired you. Kristen, just read your post about William. Wow. And the coincidence about the doctor? Unbelievable. We had a coincidence, too, in that there is an amazing pediatric neurologist who trained at the hospital where Max was born who works 15 minutes from our home (we live in a different state where we had Max). I always thought that was fate, somehow.
Ellen,
WOW, it’s amazing what one doctor’s insight to what a parent needs to hear at a time of crisis can do to your outlook. We also had a very special doctor when my daughter was diagnosed with cancer that told us all the harsh facts and statistics, but also gave us so much hope.
If you don’t keep that hope and love, what else is there?
Great post, Ellen!
I do still cry when I think about those early days. Every single time! I read someone the other day who thought she has post traumatic stress from the NICU, and I think that’s accurate for me as well.
As for doctors, we’ve had a few. One is still with us (our pulmonologist). The best one we had was our first NICU neonatologist. He was so calm and patient and compassionate. He sat with us and REALLY talked about Addison’s issues. He sat with us when other specialists came in and helped us ask questions. He was just what I needed.
Okay, now I’m crying. LOL
We are definitely lucky to have had a lot of great doctors. No one has ever tried to tell us our baby is going to have a horrible life. I hope that this old way of thinking goes the way of the dinosaurs. Seriously, it is not helpful at all. There is a way to prepare parents for a different life without killing hope.