I honestly never thought I would write in-depth on this or share this because of how much trauma honestly still exists within me. Every time I talk about it, or write about it, I can feel my insides still tighten up and a bit in my stomach, but I also know for me writing is healing and processing so here I go. I get messages often about the Chiari and it is other moms connecting because I shared about it some online. Here is what I never want to do though, I never want to project our experience on to them, but I can share ours. Everyone is different. But I do think in knowing that someone else has walked it there is comfort and sometimes isn’t that all we want. To know someone else has been there and came out on the other side.
As I said, I also know that in writing, there is healing because it helps you to leave it and process it. AND I feel like for a while I lost my voice and I think all with a purpose. Also while Silas was going through it I owe a lot to a couple of Moms I connected with that was this very same thing for me. So the goal of this post is to share and help others. I probably get one message a week asking about it, and wanting to know more information. So this post is for really three reasons.
Headaches. At age 3, he started complaining of a headache. At first, it was being linked to cold or different things, and then it was not. It is not normal for a 3-year-old to stop playing in preschool and lay his head down and want to go home. I just knew in my mommy’s gut that something was not right, so per the doctor’s recommendation, he sent him to get a CT scan. Something that I honestly thought was going to show a sinus infection or something that wouldn’t clear up was a phone call I would never forget. We think he has a brain malformation and would like to have a closer look at his brain, so we are sending him to a brain specialist and ordering an MRI.
MRI showed Chiari Malformation Type 1. Again I remember this call, and I also remember being disconnected from what I was hearing. Like I was hearing, but it didn’t seem real or right. At that point, we were directed to a surgeon to monitor, and to decide if or when to operate. It was Silas’s brain, so I also just didn’t say okay, and decided to push for second opinions. I did that and through that process, we found our person. We decided to watch instead of operating. With any surgery, there were risks, but when you are talking about the brain, there are more. I loved that they did not push it, and said “we wait until the cons start outweighing and we will monitor”. His headaches, as he grew, actually started becoming less and less. Or maybe he learned to live with them I am not sure, but a routine MRI scan showed he was not getting enough fluid down his spine and back up into his brain and they advised it was time.
No one prepares you for that call. Again disconnected I felt from it, and again I didn’t understand because his actions seemed to show differently. But truly looking back, his normal was probably pain, and he just was learning to live with it.
We had to do so many little tests and procedures like a sleep study, and for every test, I could see confusion and strength at the same time in his eyes. All I know is I was going to be there, and I would have done anything to take it all from him. Do it for him. I laid beside him on every hospital bed. I could see confusion in his eyes and I just promised myself I would stay strong and happy and upbeat around him, but in almost every hallway and bathroom I found myself broken. He would sleep and I would break, pull myself back together and just pray to God for healing and to give me strength to elude the strength and steady he needs to see.
Here are some images from it. This is right before. Bless him. He has no idea what is coming. I mean we told him. But he didn’t know ya know.
This I have a hard time even looking at. He was so swollen and in so much pain.
When we got released I was half ready to go home but also terrified for him to go home with me. I kinda just wanted to stay.
No one prepares you. You aren’t told what it will be like to see your son wheeled off. Or how it will be when he wakes up screaming in pain, and is so sick that his sickness is just making him hurt worse. You’re not told how it will be sleeping on the side of his bed at night in the ICU. You hear constant beeping. I just know I laid there and the first night I got no sleep. I tried and prayed to just allow me to rest so I can be the strength he needs me to be. Again I promised I would not allow Silas see me be upset or cry. I spent that night on the ICU bed praying and just laying it all down to him at levels I could never have fathomed. I knew He had and has a plan for this little boy and I just said please heal him.
It was a rough two weeks for him. Sore muscles in the neck. Not really wanting to walk and having to find his footing again. When we got home friends and family started visiting and he really was not Silas. He was trying to hide his scar with a hoodie in front of his friends, and he didn’t have his spunk. Mind you, we had also just got Cash. Cash cuddled and literally, these are some of my favorite photos and memories. And it is no surprise this is why they are still so close. I think they needed each other.
Just last week I took this. I think they have a bond that no one will ever know or be able to touch.
It took time but slowly I started seeing pieces of Silas again. It was time for him to go back to school and I didn’t want him to. Then we got a great follow-up meeting and they were not going to really see until the year mark if it worked. At 4 months he got released to “play as normal” but I struggled. He wanted to tube on the lake and the doctor said it was fine but I was not fine. He would wrestle on the Lilly pad and it took everything in me to just let him be. And being honest I didn’t most of the time. I was constantly telling others to be easy. When on the boat, I was trying to control every factor including the driver and I just couldn’t relax. I kept in my head going to worse case scenarios and trying to protect him and honestly, I have had to talk about it with to try to work through it myself learning to let go and just let him be a kiddo again.
Fall sports came around and Silas wanted to play soccer. A new sport to him and our family. He quickly picked it up and love it! He was aggressive, happy, and a leader and I felt myself starting to let go.
January was his year mark so it was time for a repeat MRI. We walked in and the PA for the neurosurgeon looked at him and smiled and said ” Silas I saw you tearing up the soccer fields this fall”. I mean, what are the odds? The surgeon then walked in and said well, it worked and perfectly. He said do you want to see? YESSSS I want to see it. I need proof and as a visionary, I needed to see. This is before and after of his brain. HIS BRAIN. See the fluid in before not flowing down his spinal cord and back into his brain right?
You tell me there is not a higher power? I know without a shadow of a doubt God has big plans for this little boy and he had his hands on the entire staff that touched him from the surgeon to the techs in the ICU. All of them were such a blessing to us. The doctor told us he can go live a “normal” life. I just highly doubt it will be “normal”.
He wrapped up spring soccer this last weekend, and he got the award for the most goals! Everyone clapped and you could see him light up. But my depth of being proud was on another level. I saw a kid just over a year ago struggling, hooked up to monitors, and not even wanting to walk. You also cannot teach aggressiveness or passion, and he just eludes it. Also, I found myself seeing him fall and yelling son get back up and go; you are fine!
Time can heal us both. I am just so grateful for a God bigger than us and for keeping his hand on him. Until you have a kid sick like this, you cannot explain the level of surrender. I would have taken it all from him in a second if I could, but that was never the plan.
Hopefully, this helps someone. If you are reading this and your kiddo has gotten a diagnosis, don’t read online(speaking from experience). I also don’t want to list out all his symptoms because that could just be projections for you. Because it affects kids in different ways. See a neurosurgeon and then see at least two more so when making decisions you have multiple opinions. We saw a couple and ended up going with Dr. Brahma with CHOA.
Just know I feel pretty grateful to be his Mama, and maybe just maybe I have a platform, a blog, and this voice, and this was part of it too. Silas already thinks he is pretty awesome (lol), but I hope one day he will look back and see how amazing he really is!