When it's your child...

There is nothing that prepares you for a doctor to tell you that something is wrong with your baby.  Nothing.  Especially when you thought everything had been perfect from the start - but, let's be real...nothing makes them less perfect.

My sweet little Santa last year

I had been working for Ceres maybe a couple of weeks when I came home and noticed that something was not right with Liam.  Michael says that no matter what kind of grief me taking that job brought to us, that it was a blessing because of what it caused me to notice with being gone days at a time.  Up to that point, Liam had been progressing like a textbook baby.  Rolling over, pushing up,  babbling - everything was right on track.  Then, all of a sudden it was no longer real.  I clearly remember being in the car when it started to hit me.  At the time, he was 9 months old. I remember thinking... He is not crawling, but Ethan delayed crawling almost up to the point of walking (which was at a year on the dot).  He is not pushing himself to sitting from the floor...Ethan flipped himself up out of his crib at 9 months old.  He is not pulling up...at all.  My heart started to sink.  Since I had stopped for gas, I quickly Googled "does not use left arm at 9 months".  All of the search results said the same thing: Cerebral Palsy.  I started to cry.  I called the pediatrician's office to make an appointment while I was still sitting at the gas station.  She could tell I was upset, and scheduled an appointment that Michael would have to attend since I would be back in Dulac.  I came home visibly upset.  All I wanted to do was figure out what was going on with my baby.  Michael comforted me and assured me that it would be nothing we could not manage.


On December 16th, the pediatrician agreed that something was not right and referred us to physical therapy.  She also suggested that we go ahead and make an appointment with a pediatric neurologist.  We moved forward with both.  On December 29th, Liam had his first round of physical therapy.  The therapist was great.  She noted his weaknesses and asked about the neuro appointment.  Then, she recommended we get started with Early Steps.  Because the program was income based, we did not think we could qualify for it.  Thankfully, the program has been updated; and while it is still expensive, it is not nearly as costly as private therapy.  We went ahead and started the process.


On January 28th, Michael brought Liam to his first neurologist appointment.  He gave me a brief overview of the session, but the main piece was that she wanted an MRI done of his brain...  On February 9th, I walked with my little man as far as they would let me before kissing him goodbye for his first procedure.  They had to put him under anesthesia and the whole procedure would last about an hour.  It sounded so simple, but things never are when it's your children. 

Ready to go back for his MRI

Michael and I got a bite to eat at the hospital and then he had to go to work.  I anxiously sat and waited for my baby to be rolled back out.  He did very well and I was able to nurse him once we were back in recovery.  Before long, we were discharged and ready to go home.

Awake and hungry!

Two days later, I was down at the levee.  The neurologist's office called - she had the results.  The pediatric neurologist introduced herself since we had not met at the appointment.  She then gave a quick rundown of what she had covered with Michael. "We thought that maybe he had a stroke..." I'm not sure I registered what else she said immediately following.  I had to catch my breath.  No, I was not aware that my baby could have had a stroke.  In an effort to protect me, Michael had withheld some of the possibilities they had covered.  I was brought back to reality when she started to discuss the MRI findings.  Liam most likely did have a stroke (possibly an infection or exposure to a toxin), but it would have been during my first trimester with him.  The result was a cleft in his brain on the right side.  The diagnosis: Schizencephaly (specifically - unilateral, closed lipped).  Now, that's a nice big scary word for a mother who is three hours away from her baby.  I started to scribble down pieces of her explanation.  She said thankfully it was small, and appeared to only go through the area of  his brain that affected motor skills on the left side - primarily his arm.  After I got off the phone, I did what any other completely distraught mother would do - turned to Dr. Google.  Between the information my husband had not shared and what my Google search turned up, to say I was upset was a COMPLETE understatement.  I'm not sure how I functioned from that point until the follow-up appointment that Friday...


At the follow-up, we learned that we would need to add occupational therapy to our regiment.  We also discovered that time would be the only way to get some real answers.  Liam could have seizures.  He might have a learning disability.  But, his brain injury would not worsen.  It was not genetic - just spontaneous.  His progression so far made his diagnosis less scary, but there were still so many unanswered questions.  When would he walk?  Could he start a school program like Ethan at 2 years old?  How much do we share with people?



We decided that we did not want to draw unnecessary attention.  We shared the news with our family and close friends - and have shared it when we felt it was relevant or people asked questions (like if he was walking now that he is older).  Liam is a normal little boy - he just needs a little bit of extra help and patience.  Over the last nine months, we have watched him go through slow times of progress, and lightning speed times of progress.  Ultimately, we know our little man is flourishing and that it will continue.  He is stubborn and strong-willed (just like his mother).  In fact, an early Christmas present arrived yesterday.  My sweet little man is walking. 

The one thing that I constantly remind myself is how lucky we are.  Stories about babies who are sick or have physical impairments touch me so much deeper now.  There are many levels to Schizencephaly, and we are so blessed that Liam will be able to work through his diagnosis with the assistance of therapy and live a normal life.  So many children out there are not as lucky.

I also cannot say enough wonderful things about the Early Steps program.  If your child is experiencing any sort of delay that raises a cause for concern, they are unbelievably helpful.  The case workers, therapists, everyone involved has been a Godsend.


I debated on if and when to talk about this publicly, but I realized that it is nothing to be ashamed of.  My son may need a little extra help right now, but there is nothing wrong with that.  I have started to notice that Ethan may be experiencing a little bit of regression, just because Liam does get some extra attention with therapies and needing to be carried at times.  We do whatever we need to for Liam to excel, but also keep in mind our independent little 4 year old has needs too.  It is definitely a balancing act.  Let's just say that there is never a dull moment.