Hello my name is Krista Shulze. I am from Anna, Ohio, which is a very small town. I will start off with what it was like to find out that Caleb had a disability. From the beginning, being pregnant with Caleb was challenging. First of all, we were not even supposed to be able to get pregnant. We adopted our first child. Anyway, finding out we were pregnant with Caleb was so exciting. Tears were had by all who knew us, but shortly after we found out we were pregnant, I started having difficulties. My hormone levels were so low, they thought that we would miscarry. But thanks to God and excellent doctors, we were able to continue the pregnancy.
Just when I thought everything was going to be alright with this little baby, we found out at our twenty week pregnancy scan that Caleb had Spina Bifida Myelomeningocele. A million questions immediately filled my mind. The doctors that told us the news were already acting like Caleb was dead. They just kept saying how sorry they were. They told us all the worse case scenarios and gave abortion as an option of dealing with all of this. I was terrified when I left that office. I could not even drive myself home. Telling our families about our son's diagnosis was just as heartbreaking.
The next day, we were sent to a genetic counselor who also gave us lots of grim information. She also talked about abortion as an option. Once we made it clear that that was not something we were willing to do. She did move on to talking about the prenatal surgery and local resources like our Spina Bifida clinic. We chose not to have the surgery for a number of reasons. Leaving there was not much easier than the day before.
We then made an appointment with the local Spina Bifida clinic and talked with the neurosurgeon there. He made things SO MUCH BETTER! He was able to give us a realistic view of what to expect and lots of resources. We were able to see actual kids who were doing great with Spina Bifida. That was such a relief. My OBGYN was also great. He even called me over the weekend from his home just to talk and see how we were doing. (The people who gave us our diagnosis were not our regular OBGYN).
Throughout my pregnancy, I struggled with fear and emotions. I worried about every possible scenario from him walking, to hydrocephalus, to his intelligence, to how it would affect our oldest son, to future children, to incontinence, to what vehicle we would need if he did have a wheelchair.
By the end of my pregnancy, I decided that I did not want him to come out, I just wanted to be pregnant with him forever so I could protect him. Fear can do crazy things to a person.
But once he was here, oh the amount of love I had for him erased all those fears. Sure those things were still on my mind, but I now had this wonderful little being to put all of my nervous energy into. Sure there were times when it was hard, but in those times, instead of being fearful, I found this incredible fierceness and strength to protect him and help him. Also, my faith grew immensely during this time. This child changed me, and life was so much better with him here in my arms!
You all will be glad to know that Caleb is now 5 years old and in kindergarten. He has had the typical surgeries such as the closing of his back lesion, having a VP shunt inserted, and shunt revisions. Caleb has still been a delight!
To get around, Caleb uses a manual wheelchair. Twice a week, Caleb does physical therapy. At physical therapy, Caleb was able to learn how to walk with a crocodile gait trainer. He also learned how to walk up stairs holding a rail. Although he walks with the crocodile gait trainer, Caleb’s orthopedic team has high hopes that he will walk with AFO's and crutches. At the moment, he wears KAFO braces. Caleb was also born with club foot and has had three surgeries to correct it. This last surgery during the summer has seemed to be a success. Caleb is finally able to stand on the bottom of his feet!!
Caleb is very intelligent and although he just turned five in July, his preschool teachers and new kindergarten teacher felt he was ready for kindergarten. He loves it so much! Luckily though, he has had a wonderful teacher and he has been able to overcome most of his social anxiety.
After two years of preschool, Caleb was like a celebrity at his school. He knew everyone and they knew him. Caleb has lots of friends. He loved his preschool by the time he left. Starting kindergarten was still a challenge for him because it was a new environment, new people, and a new routine, but Caleb is already loving it and has made some new friends. Caleb is one of my four almost five children. We are due in March with our next little bundle of joy!
Caleb’s siblings have been nothing but a blessing for him. They have encouraged him, pushed him to do more, helped him in difficult situations, brightened his mood, and been his friends from the beginning. Although they sometimes get jealous, when hospital stays and doctors visits require special attention from mom and dad, they are the first to jump in and help Caleb (sometimes too much) or defend him if need be.
When not in school or at doctors appointments, Caleb’s hobbies as a five year old include playing in the sandbox, riding his bike, wrestling his brother and dad, finding bugs, growing things and art.
Caleb wants to play basketball someday and show cows in the local fair. He is not sure what he wants to be when he grows up, but maybe an artist, engineer, architect, or maybe even a farmer.My goals for Caleb are for him to be truly happy, find a vocation that gives his life true meaning, and for him to be a successful, independent adult.
Through having Caleb, I have learned so much. He has taught me to be joyful, even in suffering, he has shown me what perseverance and determination really means. He has given me the ability to cherish each and every little accomplishment. And boy has he shown me how to take things lightly with his sense of humor. When something happens like the wheelchair lift not working on his school bus, instead of being upset, he finds great humor in it and gives me gut laughs. He has definitely shown me to not take life so seriously.
My advice to other parents is to enjoy your child. Do not get caught up in the small details. As soon as you can, connect with local resources and other parents who have been through this. Trust in your gut and fight for things that you believe in. Find good doctors, if you do not like one, talk to them. If you still do not believe they are a good fit, find a new one. Have faith and pray like crazy.
When it all gets to be too much, take a break. Go get coffee with a friend, go shopping, go to church, drink a glass of wine, go on a date. Take care of yourself too. Then go home and squeeze that child. Let your child try things even if it scares you. For example, it terrified me to let my son wrestle with his older brother, but his older brother knows what to do and not do and it truly is something they both enjoy. Letting your child try things that you do not think they can do teaches them independence. They also, more often than not, will surprise you with what they really can do! Most of all just love them!