Growing up when you dream of your future and your hopes, I don’t know of anyone who imagines themselves having a kid with special needs. When you first become pregnant that thought doesn’t cross your mind.
To be honest, I had never heard of Spina Bifida until our 20 week ultrasound.
But to say that Jacoby hasn’t changed and fulfilled our lives in many more ways than we could have ever imagined would be a lie. He has been more of a blessing than words can explain.
When we first brought him home it was the normal overwhelming first time parents situation where we were up every 2 hours to eat, he’d sleep, he’d want held and he was a baby. But then there was the task of cathing, watching his back lesion for infection, the vomiting oh the vomiting, the frequent Drs appointments and then the casting.
Jacoby was born with dislocated hips and clubbed feet and at a month old he began almost a 4 month long process of casting to bring down his hips and turn his feet.
You can not imagine the looks, the words, the confrontations we got into over those casts. We were young, carrying around this baby with 2 thigh high casts on. I was changing him in a bathroom and one lady said that the system is broke if we are allowed to keep our kid after hurting him. I was soo mad the only thing i thought to say to her was to eff off.
Jacoby never took a real bath until he was 5 months old. Between his back healing, his casts, and then his shunt surgery he was always sponge bathed.
September 10th, 2007 Jacoby didn’t wake up like normal. I walked into his room and he was awake but very lethargic and noiseless. I called Josh and decided to take him into Dr. R to get checked out. His fontanel was a little bigger but had always been a little more firm due to the hydrocephalus. Dr. P, our neurosurgeon said some kids bodies naturally adjust to hydrocephalus so he wanted to give Jacoby a chance to self correct. At Dr. R, they immediately measured his head and in a time span of a week, it had grown 7 cm. Dr. P was in Lincoln doing a brain tumor resection but scheduled Jacoby for a shunt placement the next am. I sat up all night with Jacoby as he puked up everything, couldn’t move his right side and was not my little boy.
We arrived at Children’s early and the nurses still remembered Jacoby. Dr. P came in and gave me a hug and promised to take care of him. We walked him all the way to the outside doors and kissed him goodbye. I lost it. The thought of my little guy getting his head cut open and his stomach cut open was hard to think about. We waited for what seemed forever before Dr. P came out and said he would take us back to Jacoby and we could follow him up to the PICU. When I first saw him my heart broke. His head was sunken and he was wimpering like he was in pain. As soon as we got to our room and they got him settled I held him until his pain medication kicked in and got angry. Angry that this was happening to him. Major surgeries, casts, eating issues and pain. And he wasn’t even 4 months old yet.
From then I noticed more of a struggle in myself. Jacoby went on to have Achilles surgery that November and we finished out the year hoping it could only go up from here.
I wake up everyday with the fear that Jacoby will have had a seizure and died in his sleep. Or that today is the day his shunt fails and he will need emergency surgery. Or he will get a pressure sore that will turn into an infection causing sepsis then death. I wake up everyday with the fear that as I kiss him and send him off to school, it may be the last time.
Jacoby had a seizure at 9 months of age, February 11th, 2008. Since he had his shunt placed for his hydrocephalus in September and it went well and no one ever talked about seizures post shunt surgery. So here was my baby laying on the ottoman shaking and turning blue around the mouth for what seemed like forever and I didn’t know what to do. I didn’t know why my baby wasn’t crying when i picked him up or touching him or calling his name. I remember his limp body and at the ER the nurses rubbing his chest and pinching him to get him to respond. I remember asking them to do something and the Dr asking if I shook him, then how long Jacoby had seized. I remember standing back trying to see through the crowd and my mom saying a prayer next to me. And then I remember when he first came back and his cry he let out and how I crumpled to the floor in relief and tears. I was 21 years old and almost lost my child.
I had found out I was accepted to nursing school the following week and was torn between my child and my future. Jacoby was moved from his crib back into our bed post seizure for fear he was going to seize in his sleep. It took until he was almost 2 to break the habit.
As I worked nights while Josh pushed through college during the days I spent my time running Jacoby to and from Drs, therapies, and got the Early Development Network involved (Highly recommend it if you are worried about your child)
Josh and I were having the first year of marriage struggles and ontop of it was dealing with Jacoby’s stuff and the fact that i had fallen into a depression that I was refusing to acknowledge. Getting out of bed was a struggle and I had to tell myself that as long as I got to the bathroom in the morning I could make it through the day. I was taking it one day at a time, which is often when I still have to do.
Special needs parents are more likely to get divorced compared to normal marriage population. The statistic is 70% divorce rate by 5 years of marriage. Stress of health worries and money can break a marriage. Sometimes I look back and don’t know how we made it or why we did compared to others. I’m glad we did and am blessed to have Josh by my side.
Josh graduated and Jacoby made it to his first birthday and we celebrated making 1 year with him. I remember thinking for the first time in a year, that we could do this and it would be alright. This was going to be alright. We were going to be alright.