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Epilepsy Blog Relay: Raising a child with multiple chronic conditions

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Rachel’s story

Andrew is my first born, I was 30 years old and more than ready to begin my life as a mom when he came into the world. On the day Andrew was born, I was 38 weeks pregnant and was expecting a healthy baby. From the moment he was born Andrew was showing signs of distress. He was bruised, had a misshaped head, and he grumbled and grunted when he breathed. His cry was high pitched, but even with all of that he was perfect to me, and I was ecstatic. I was now a mom.

When Andrew was two days old things would change dramatically. Unknown to me, Andrew had a seizure and turned blue in front of the nurse. He was rushed off to the NICU where he would remain for the next 14 days. For whatever reason, Andrew’s brain had bled. Andrew is now 18 years old and I am now a veteran mom.

Multiple Chronic Conditions

Andrew cannot talk or walk. Those brain bleeds damaged his brain and left him diagnosed with Cerebral Palsy, Lennox Gastaut Syndrome and Cortical Visual Impairment. He can do very little unless I am there to help him. With all of Andrew’s struggles, and even as I adjusted to life as a mom of a child with special needs, Andrew has always been first and foremost my child. He is a central part of our family of six, and we live a very full, active life.

Related: 8 valuable (and brutal) life lessons everyone should learn

Our nightly walk

One of Andrew’s favorite activities is for me to push him outside in his wheelchair throughout our neighborhood. We usually take our walks after dinner-time, when the lighting is dim and the air is cool. Andrew is at his best then. I know Andrew enjoys our time together as we travel our usual route through the neighborhood. This is our happy time. I know this because Andrew sings most of the way. He’s content and that makes me happy. These moments when I know Andrew is content are when I am most at ease.

We were out on a walk the other day and just about halfway through our walk, a car approached. The car passed. It was our neighbors, so I waved hello. In the car were a teenage boy and his dad. The boy was learning how to drive. And with the pass of that car, in that quick moment, the happy moment I was having walking with my son came to a screeching halt.

It hits me. Just like that, I am taken somewhere else, I can feel my heart racing. I have tears coming from my eyes all because that boy is driving. Yet, my son is in his wheelchair and is being pushed by his mom. That boy is experiencing life like most everyone else. He is learning to drive. My son should be driving. He’s that age. He should be driving.

The questions start to race through my mind. Why does Andrew not get to drive? Why did this happen? Why does this particular moment hit me so quick and so hard? I am after all a veteran mom. We’ve been through a lot. I’ve been told things that no mother wants to hear about their child and I’ve taken it all as it comes, but this moment that is so simple is knocking me off my feet and bringing tears to my eyes. Why? It takes me a few minutes and my mind has run through all sorts of emotions; sadness, pain, anger, resentment, and back to pure heartbreak. I want Andrew to experience everything every other boy does, and he won’t. I try to get myself together.

We’re still on our walk except I’m not paying any attention to Andrew and to where we are walking. My mind is in a place far away. If I had been paying attention, I would see that right then we were at Andrew’s favorite part of our walk. We were around the block, where the pine trees line the road. Andrew doesn’t see much, but I know he looks up every night at that exact time, in that exact spot and follows with his eyes that row of pine trees that line the road. Andrew recognizing those trees during this part of our walk is a milestone for us. He is still singing too. He is delighted with our walk and that simple feeling that I can sense from him helps redirect all those emotions I am feeling. He is happy. Really happy.

Related: When its okay to be a helicopter parent

What I learned

One of the most important things I’ve learned over all these years as Andrew’s mom is that it is healthy for me to grieve my loss, and to feel sadness for what has happened. I can have temporary lapses. Emotions don’t necessarily surface during an obvious moment, they can sneak up on you when you least expect them. It is okay for me to let any emotions I am feeling to come to the surface. That is okay. It is actually needed. What I’ve learned most of all though, is that Andrew needs me now. He really needs me present in the moment with him. He deserves that, every child does.

NEXT UP: Be sure to check out the next post by Rachel E. at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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