I realized today I have never posted my sons journey, the journey that changed my life and mindset forever. I have to shout out to my parents, Jaxson’s grandparents for being there daily though it all. When my husband was at work, my mom took me and accompanied me many days. My in laws also came a lot, a few friends and my grandparents too and Jeremys. So much family, friends, love and support.
My son was due on Friday, May 13, 2005. I had an easy pregnancy, never had morning sickness and never had any complications. It was smooth. But the night before on May 12th we went to dinner with friends and went home and watched The OC. I think I touched on this previously. He was normally so active, but I was due the next day and per the pregnancy books movement can be a little slower when your close to due. But I didn’t feel him at all, he normally kicked me constantly. So I laid down and did the kick test for an hour. Nothing. I thought I was just envious my friend was having her baby and I was due. I thought it was all in my head. But it didn’t feel right. So my husband took me to the hospital. No bags, no car seat, nothing just my pregnant self.
We checked in and they checked me and hooked me up to monitors. Then they said there was fetal distress and were calling the doctor in. Then they told my husband to go home and get what we needed, we would be having the baby soon.
The doctor came in, my husband was at home gathering our things. The doctor told me that she didn’t feel comfortable with inducing me as she didn’t think the baby would tolerate it and wanted to do a c section. I had wanted one anyway so no big deal to me. Then his vitals dropped and they rushed me to the OR. My husband barely made it back before they were cutting my baby out. We had got to the hospital around 930pm, my son was born at 12:28 Am, on Friday the 13th of May, which happened to be his due date. His umbilical cord was wrapped tightly around his neck multiple times. If we had not come in that night, he probably would not have made it through the night my doctor said.
We were in the hospital Friday-Sunday. Home Sunday night. By Tuesday we were checked in the ER at St Vincent and then the NICU and my son would have had emergency surgery to save his life. He had a malrotated bowel with a volvulus. He lost a large section of his small intestines and had to have an illeostomy until they could reattach his intestines. We would be in the NICU until July.
Wow, what a intro into first time parenthood. When we got out of the NICU we finally could take our baby home, but it didn’t last long. In October he would be admitted to the children’s hospital for failure to thrive. We would stay a couple weeks there and spend his first Halloween there. It was at that time that one of the residents was intrigued by his head. He got the doctor to order an MRI. The results came back and he would need a consult with the pediatric neurosurgeon. Jax had a larger head, but this was the first time it was brought up that something was not normal about it. Thank gosh for that resident, Jaxson had a chiari malformation and hydrocephalus. The surgeon told us they could take out part of his first cervical spine and open up the foramen magnum of his skull, the hole that your spinal cord goes through into the brain. They would then monitor to see if that took care of the hydrocephalus, if not he would need a shunt. The surgery was scheduled for the next available which would be November, he would require a stay in the pediatric ICU after and then once stable be transferred to the children’s pediatric unit. So that was the plan. Funny how I had no idea that a Chiari is considered a brain Injury, but it is and I’m well aware now, especially since I have a brain injury. I can so understand and relate to my son like I never could before.
We would get yet another hospital stay later on. My son had chronic ear infections, so his last surgery would be when they put tubes in his ears. So thankful we did, he definitely needed them.
Jaxson is now 15 years old. He is delayed developmentally, but he does really well in school. It is not easy for him, but this kid has the most amazing mindset and motivation and a ton of support thanks to being on an individualized education plan to ensure he’s successful. He wakes up daily and does a 30-60 minute cycle on our peloton, and does classes with weights too. He works out at his dads. He runs the steep hill at my parents, he is all about being active and staying in shape. He has a love for baseball and practices multiple times a week, Covid didn’t allow for a summer or fall season but his papa plays with him multiple times a week and they have a routine. He also does private coaching for baseball too with his coach Tony through Five Tool Baseball and he loves it, I have watched their sessions too and I love it. The connection they have is amazing and so needed for my son.
That’s just a short recap of our journey. It’s been a journey that’s for sure. But he’s a happy and healthy 15 year old, he beat all the odds he’s had against him. I now can see where I truly learned my strength and determination. He has had more surgeries and hospitalizations than I have, we are almost tied I think but we both have a good mindset and determined spirit. I honestly don’t think I would have that if it wasn’t for him and all I have been through with him. He has taught me how to be resilient, how to be determined and how to advocate for yourself no matter what and how to advocate for others as I have had to a ton with him. I have truly learned my strength through him and we are both survivors and not willing to use any of our disabilities as an excuse, but as motivation to do better and be the best we can be.
I know he loves me even though he doesn’t tell me and I know he’s proud of me, just like I am proud of him. I do understand him a bit more now that I have a brain injury. Purpose in it all.