‘NO ONE would babysit him. ‘I’m not able to care for a child like that.’: Mom to son with cerebral palsy urges special needs parents ‘your sacrifice doesn’t go unnoticed’

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“It’s always hard to know where to begin when someone asks what my story is. As with most people, there are so many different parts of my life that this qualifies for. After some thought, I will use this to bring some awareness to CP, seizures, mom feelings, and other things.

You see, my son has cerebral palsy. Left-sided hemiplegic cerebral palsy to be exact. This was caused by a stroke before he was born. The stroke happened on the right side of his brain, therefore, the left side of the body was affected. We didn’t know how much he would be able to use his left arm and leg. Before he was born, I had no idea there was such a thing as this. I also had no idea babies and kids could have strokes. It was definitely a wow moment learning about these two things. He is 14 now and very much a loud and oftentimes annoying teenager.

When my husband and I began this journey with our secondborn, we were absolutely sure we could handle it. 100% sure. We had a pretty strong marriage and we were pretty dang resilient separately as well. I mean, how hard could it be? We had one kid already and did pretty well with him. I mean, he was still alive anyway. Boy, we were wrong. One of many many times we have been wrong the past 14 almost 15 years. It’s been a long journey and it’s not nearly over. It will never be over.

Dad holding newborn son and toddler
Courtesy of Amanda Sullivan

But here’s the thing, every person’s situation and story are different. The reason I tell mine and want to tell mine is we felt very very alone through this journey. Our support circle was basically non-existent for the first several years. Also, there were no support groups on FB yet. The doctors told us the bare minimum at his appointments or when we had questions. I’m still not sure why. I would like to hope it was because they didn’t want us to have preconceived ideas of what he may or may not be capable of in life. I don’t want others to feel as lonely as we did. I don’t want others thinking they are the only ones who have to research, plan and think about how to handle this type of situation. Having a special needs kid doesn’t just affect the one who has it, it affects the entire family. That is also something I don’t think others talk about enough. It took us a long time to find joy in the life we have. I don’t want others to take as long as we did.

Andrew was diagnosed at 9 months of age. As I said, we thought we could handle it. We didn’t really know what to expect but we knew he needed therapy, love, and acceptance regardless of what his diagnosis was. So that’s how we started out, first things first, signed him up for physical and occupational therapy. We were both working full time but since my schedule was more flexible and his dad had just started a new job we decided it was best for me to take him. He had therapy Monday-Thursday from 8-9 a.m. in a town 28 miles south of where we lived. Stay with me, I have a purpose, I promise. I worked in a town only 20 miles south of where we live. Oh, and I have to stop in the town I worked in to take the oldest to the babysitter. So here we go. I would drop Reese off in the town I worked in, take Andrew to therapy for an hour, then take him to the same sitter where Reese went then head to work, four days a week.

Brothers hugging on couch
Courtesy of Amanda Sullivan

At first, it was okay but I got tired of that real quick. By about 6 months in, I was ready to quit. I left in the morning at 6 and didn’t get home until almost 7. I was exhausted. I felt like a crap mom because I was tired and I had zero time to do all the things the therapists wanted us to do at home. I felt like a crap employee because all I could think about at work were the things I wasn’t doing at home with Andrew. It was seriously a crazy time. It was about this time I started to question if we could handle anything. We got lucky and I ended up being able to transfer to a work branch much closer to the house so I also transferred the therapy and got a new sitter.

Let’s talk about getting a new sitter for just a minute. NO ONE would take him because of his diagnosis. Most of them said they wouldn’t be able to care for a child ‘like that.’ I cried and cried a lot. The search was not easy and was very long. Finally, we lucked out and found a lady that was so sweet and loving that took him into her home daycare. Special needs parents struggle so much when it comes to finding childcare. Most of us are told they can’t accommodate us or our situations. It’s heartbreaking. All we are trying to do is make a living like everyone else.

Boy with cerebral palsy smiling
Courtesy of Amanda Sullivan

We started Andrew with the new sitter, continued therapy, and working. It was still a grueling schedule but not as bad as before. With therapy and our new sitter’s help, Andrew learned how to walk! We were super thrilled. Anytime he reached a milestone was cause for extra celebration because you never know if he would be able to. He was progressing so well. He was seriously the happiest toddler I have ever seen. He still giggles a lot and at mostly everything. He’s just such a light. My point to the above story is most moms think we have to have it all figured out in the beginning. I jumped right in trying to ‘cure’ him of his physical disability. I took pride in not letting it upset me, even though it did. It doesn’t work that way. Allow yourself time to grieve, accept and just figure stuff out. This is what I should have done.

And then the seizures started. Not so bad at first but after about a year from his first one they started more regularly. We started seeing a neurologist closer to home and she would adjust his meds, then we would be okay for a few weeks then she would have to adjust them again. It went on like this for a while. Then the drop seizures started. This is what I call ‘when hell began.’ Seriously the worst time in our lives. He was having 30-40 of these types of seizures a day, falling to the ground several of those times. We had to get him a helmet just so he wouldn’t hurt himself. At some point during my research, I found out seizures are common with CP. I was so mad the doctors did not tell us what we were up against. But what could we do? We are here now.

Courtesy of Amanda Sullivan

We adjusted meds, again and again. We refused one med because of the potential side effects, which later turned out to be a big mistake because it was one of the medicines that helped save his life. My husband started working evenings and weekends so one of us could be with him at all times. Someone had to be with him at all times. He could not go more than a couple of minutes without having a seizure. I remember trying to use the restroom and Reese would scream ‘seizure’ and I would have to run back to check on him. I also remember him falling into the toilet a couple of times when he would try to use the restroom. We had to tell him to sit and pee. Scared doesn’t even begin to describe what I felt all day every day. I told everyone we were fine, we were not. I told everyone we didn’t need anything, we needed everything. We needed people to come to hug us and just sit with us. We needed people to talk to, to vent to and no one was available to listen.

Courtesy of Amanda Sullivan

I used all of my energy taking care of Andrew I couldn’t be the mother I wanted and needed to be to Reese, and I certainly had zero energy to be a wife of any kind. We were just like roommates that had kids together at that time. We researched about the ketogenic diet so we reached out to whoever would listen about getting a referral to put him on the diet. We were desperate. The dietician we saw that was closest to us did not care for us asking a lot of questions. We had done a lot of research and she had just started researching it at that point so she didn’t really jive with us and honestly, we were criticized for this by everyone. But we did what we felt like we had to do for our son. We saw his PCP at the time and asked for a referral to a hospital 6 hours from us so that’s what we did. I don’t remember a lot of that trip to be honest. I think my brain shut it out for self-preservation. Plus being on autopilot for so long just my brain probably didn’t see the point in creating memories.

Mom and son on surgery day
Courtesy of Amanda Sullivan

A few months later, we are doing the keto diet and started the medication I mentioned above we initially refused. He’s doing remarkably well! I’m not sure if you have heard of the keto diet for epilepsy before but we had to measure everything he ate and drank. Even the carbs in medicines were factored into how many sugars, carbs, and calories he was allowed to intake daily. He had to drink heavy whipping cream to get all his fats in. We did this every day for 3 years. We were so scared and excited the night we took him to eat Mexican food! But man oh man did he enjoy it. I wish I would have taken a picture of that because his face lit up like a Christmas tree! And afterward, he had ice cream and holy cow, he was in heaven.

Mom and son smiling
Courtesy of Amanda Sullivan

There have been other diagnoses throughout this journey as well. He struggled with sleep apnea, one of the worst cases they have ever seen in a kid. He had a swallowing disorder and he struggled with asthma for quite some time. I could write a 300-page book on all of it really. Now that he’s older, I can look at things a little more clearly. Oh man, the beginning is super hard. You want to be everything and do everything your kid needs and wants. As a mom, you want to take their pain away. As a mom, you just want to fix what’s wrong. That is what we are meant to do as moms and when that is taken away from us by something like this, we don’t like it and we don’t deal with it well.

The thing is I still feel that way all these years later and probably always will to some degree. There are parts of this story I could go on and on about and there are other parts I could easily never talk about again. The pain and acceptance have always been hard. The grieving for the child you thought you had and accepting the one you do have is oftentimes never done. The hardest diagnosis for me is when he was diagnosed with a low IQ. They call it mild intellectual disability. This was harder on me than the CP diagnosis was because I 100% believe it was epilepsy that caused it. I will probably never be convinced otherwise. I was the closest I’ve ever been to a complete shutdown at that point. I could not handle anything else on my plate. I didn’t know which way was up or down or sideways, nor did I care. It took a while but we got past it.

Mom and son smiling
Courtesy of Amanda Sullivan

Be open and honest with how you feel. Be open and honest when you need someone to sit with you. Be open and honest about how things are really going. I held everything in. I wanted everyone to think I could handle it all on my own. And I couldn’t. My other relationships suffered from it. Also… all those things the therapists want you to do at home. Do them when you have time and don’t stress about it. I am finally at a place where I can smile when I think of Andrew’s future and my future. I will always have to help him in some form or fashion but I am happy to do so. My goal is for all of us in our family to be happy. Despite what we have been through together, despite what we have been through individually, we want to be happy.

I don’t work outside the home now. Another long story for another time but just know as a parent everything you do is going to be good enough. Everything you sacrifice does not go unnoticed. Everything your family sacrifices does not go unnoticed. And please know, you are not alone. And when you are at your lowest point and you feel like you don’t have anything left in you, that’s okay. Let yourself feel that and accept that is where you are at that moment in time. Give it a name. But don’t let it stay in your brain too long, you will know when it has worn out its welcome and you can get back to your wonderful fabulous self.”

Mom and son smiling
Courtesy of Amanda Sullivan

This story was submitted to Love What Matters by Amanda Sullivan. You can follow their journey on Instagram, Facebook, and their podcast. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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