Our Story: 22 months after a Baby Stroke

"This is how I roll"

It's been a while since I've written or even read blogs.  I have been sick and on survival mode.  It's difficult being sick for a prolonged period of time and still having someone completely dependent on you for survival.  I guess that's why I wondered if I could be successful as a mother.  I am blessed with a wonderful supportive sister who is helping me take care of my baby.  I don't know how I could do this without her.  I definitely don't want to find out.

Baba has been sick too. He had Toxic Synovitis of his right hip, a cold, and the Norovirus right after.  He has been quite the trooper and I'm impressed with his ability to endure discomfort and pain.

Despite these illnesses, he continues to grow and develop into a smart and loving boy.  He is talking more though he still has trouble saying the words on his command.  Most likely he is having motor apraxia, which I also see in his fine and gross motor skills, though much milder. 

His cognitive skills are flourishing and I'm constantly amazed by what he knows.  He can sing the alphabet song and Twinkle, Twinkle, Little Star with some word substitutions.  Aren't toddlers adorable when they sing?  He is also starting to read.  I know that sounds crazy, but it's true.  It's amazing and worrisome at the same time. 

Thinking before acting

I feel terrible because I haven't been able to provide the therapy that he needs.  I need to implement "The Wilbarger Protocol", start oral motor therapy, increase "Sensory Integration Treatment", and implement a sensory diet.  Yet everything is on hold while I recover from the worst Fibromyalgia flare up I've had in 2 years. 

It's hard not to worry that I'm missing the window to affect his brain most effectively.  We're almost at the 2 year mark.  Not only is his brain very plastic in the first two years, stroke victims generally make the most improvement in the first two years after the stroke.  It's not that they don't continue to improve, but the first two years are the most dramatic.  Of course, that's based on adult stroke victims. 

There is a lot less information on baby stroke victims.  The amazing progress I have seen with Baba is beyond all my hopes already, but he still has difficulties to overcome.  He still displays a positive Babinski Reflex, a sign that his brain has not fully healed and integrated his reflexes.  This may be the reason he is displaying motor apraxia, difficulty coordinating the muscles to complete motor actions.  This is affecting his ability to eat, learn new motor actions, balance when not focusing on his balance, and increasing his height insecurity. 

He is also hypersensitive to touch, environmental sounds, and taste.  These hypersensitivities affect his ability to enjoy public outings, social gatherings, and any new environments he may encounter.  This in turn affects his social skills, his willingness to explore new environments and situations, and eventually his success in school. 

More complex emotions

I am so grateful for the progress we've made so far.  He is doing so well.  We are so fortunate.  Yet as a parent, I can't help wanting to do all I can to make his life easier.  I want to do everything in my power to help him, but my own illness makes me feel powerless.  I can't push myself because I only end up making myself sicker, longer.  It's frustrating to have the tools and be helpless in using them.  Maybe it's as frustrating as having the power, but lacking the tools.  Neither is a great place to be.

I'm glad to have this place to air my feelings!  I didn't even know what I was really feeling!  I just felt overwhelmed, frustrated, and depressed.  Being a parent is definitely the hardest job I've ever had!

Someone recently said that they were impressed by my dedication to being a mother.  She's a wonderful mother herself, so I wondered what she really meant.  What made me more dedicated than an already dedicated mother? 

Ready to explore the outside

I think it's something all mothers of special needs children share.  We have a drive to help our children.  We need to dedicate more of our time because  our children have needs that require extra attention and dedication.  It's not that mothers of typical children aren't dedicated, for they certainly are, but special needs mothers also  need  to carve out time looking for resources that aren't always available, taking extra time to care for extra physical or emotional needs, and providing therapy.

I was also profoundly affected by seeing my child in the NICU.  My heart broke when I saw my precious baby hooked to a thousand wires, looking helpless, and alone.  It stirred strong emotions that still haunt me today.  It's the image that pushes me to do more and be more for my child.

I am sure I would have been a dedicated mother regardless of my baby's health, but I know that my baby's stroke changed me forever.  I know I'm not the only one who feels that way.  I know there are legions of mothers who are going through the same thing.  I hope that it has more positive effects than negative ones.  I hope everyone finds some peace after such a traumatic experience.