DAILY LIVING & MOBILITY

Deep roots are not reached by the frost: Our CP journey

Cerebral Palsy (CP)

Rebecca Mills

Deciding to become parents, again

After years of not wanting more children, my husband, Kevin, and I decided we wanted to start planning for another baby in 2015. We had our son, Parker, when we were both young. He was 8, and I was finally in my last year of grad school so we decided to finally go for it. I went to get clearance from my doctor in October 2015. Everything was perfect. My life finally felt like the dream I had been working so hard for.   

We were thrown a major curveball when, that Thanksgiving, I was hospitalized for a major spinal cord hemorrhage that left me mostly paralyzed on my right side, along with many other symptoms. Thankfully, powerful steroids in the hospital helped resolve the worse of the motor problems, but I had a long road ahead to get back to walking without a cane. The hardest part of that time was not knowing what caused the bleed and if it would prevent us from finally having another baby. A baby I so desperately wanted at that point.   

That spring, we found out I have a cavernoma in my spinal cord which can cause bleeds. My neurosurgeon recommended waiting for another bleed to remove it, and he gave me clearance to try to for a baby. My OBGYN told me to go for it as well. I wanted it to be perfect, and she explained that pregnancies are never "perfect". She decided to have a perinatologist follow me during pregnancy just to be safe.

The 4 Musketeers

If you've seen the movie, "The Holiday" you'll understand the Musketeers reference. I was certain the addition of a baby would only further perfect our little family. It would make everything that happened the year before with my hemorrhage seem like a distant memory. Our life with an infant was really amazing. Parker, now 9, was an amazing big brother to our little girl. He was terrified of her getting hurt; his protectiveness was adorable.   

At first, his fear for her seemed normal. Kira would cough, he would worry. Over the first six weeks of Kira's life, his worries became bigger than anything we could have imagine. In what felt like a whirlwind 6 months, Parker, was discovered to have Obsessive Compulsive Disorder, anxiety, and depression. He had always been anxious (something he gets from me), but the major life change of having a baby in the house triggered his OCD.   

We spent several months trying to get him set up with a therapist and psychiatrist, and several months trying to get the right mix of medications. He started doing great, and still is. He is a champ, and really took charge of gaining control of "the monster in his head".

Cerebral Palsy

Kira was always a little behind in the gross motor skills dept. She was also really cuddly, and we all, including her pediatrician, assumed she was just lazy and carefree. She was in the NICU for 3 days after birth due to low oxygen levels, but everything seemed normal after that.   

As time went on, I became concerned about her motor skills. She kept her left hand fisted and her arm pulled op toward her body. I just assumed it was because she was right handed. Other people started noticing, too. At her 12 month check up her ped referred us to a neurologist. She got around by scooting on her butt. She couldn't stand or walk. He was concerned, too.   

My biggest concern was that she had a cavernoma in her brain. It gave me nightmares. There is a hereditary form of cavernomas, and I wasn't sure if I was a carrier. Certain cavernomas can be life-threatening, and I was so certain she had one. When she was diagnosed with Mild Cerebral Palsy, I was somewhat relieved. This wasn't life threatening. I assured myself I could handle it because she wasn't dying. "I should be grateful," I thought.  

I cried to myself in bed the night after, when it finally hit me that all the plans I had for my daughter might never happen. What would her life be like with a disability? Did I do something wrong? Should I have known sooner? All these thoughts I didn't want to share with anyone, not even my husband who is my closest friend and teammate on this parenting journey. I didn't want anyone to see my heartbreak and fears because I didn't want them to think of my little girl as disabled. That was the only time I cried. I decided right then to turn on momma bear mode again. If we could get Parker the help he needed for OCD then we could get Kira the help she needed. After all, we are the 4 Musketeers.

Changing my perspective

Kira is doing amazing in her treatment 4 months post diagnosis. She's recently started using a reverse walker. It's the most adorable thing to watch. She has a whole team cheering her on. Parker always asks how long his sister will need braces and a walker. I hate that it isn't a question I can answer. My whole adult life I've been a planner. I've always been envious of Kevin's ability to go with the flow. I have to say the biggest adjustment I've had to make on our CP journey is learning to just live in the present, and be ok with the uncertainty of the future.   

There is a quote from JRR Tolkien, "deep roots are not reached by the frost", and that is my motto now. We don't need to know what is going to happen in the future, we need only know that the four of us are strong enough to tackle whatever barrier we may face.

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