Caleb's Story

In the summer of 2004, Glenn and I decided it was time to start a family.  I had actually been ready for a baby for some time but Glenn wasn't quite there yet.  I was thrilled when he said he was finally ready and I immediately made a doctor's appointment and started taking prenatals.  I was ready!

In December of 2004 we found out I was pregnant!  I remember seeing that faint pink line while standing in my bathroom and I just cried and cried.  Absolute joy.  I took 3 more pregnancy tests just to be sure!  There was no doubt, I was pregnant.

Somewhere around 15 weeks, I went to the doctor to have blood work done.  I didn't think anything of it, it never occurred to me that something could be wrong.  The blood work came back "concerning" so I was sent to a perinatologist for further testing. I was about 17 weeks pregnant when we found out that Caleb had Spina Bifida and Hydrocephalus. I remember sitting in this little office with Glenn and the "genetic counselor" came in with this book and she turned to the section on Spina Bifida and read aloud to us. It was such a blur, like everything was happening in slow motion.  The doctor did an ultrasound and showed us the opening in Caleb's spine and how the ventricles in his head were enlarged.  He told us that our son would likely have significant cognitive delays, would not walk, have no quality of life and might not even survive.  And in the next breath, he offered termination.  We were offered termination several times and repeatedly told that we had to make the decision quickly because I was almost halfway through the pregnancy.  Well, that was never an option for us and I quickly switched doctors. I remember that day so well, like it was yesterday. I will never forget March 22, 2005.  I felt like my world was falling apart. I remember sitting on our couch, just sobbing and telling God that I couldn't do this, that is wasn't fair and that I didn't want this for my baby. I was mad at God for about a day and then I realized that I needed Him more than ever and that there was no way I could deal with this without Him. People always say that God never gives us more than we can handle, but I don't think that is true. I think we are often faced with situations or circumstances that we can't deal with, at least not without Him walking beside us and sometimes even carrying us through it.

Caleb was born on August 9th, 2005. I had a scheduled c-section so all the necessary medical professionals were ready to meet Caleb's needs. I didn't get to hold him, I only got to see him as they wheeled him by me. There is something so unnatural about that, not getting to touch this life that has been in you for 9 months. Caleb had his back closure and shunt placement when he was only 6 hours old. Poor Glenn had to deal with that pretty much on his own because I was recovering from my c-section and pushing that morphine drip button every chance I could. Caleb was in the NICU for 13 days. Probably the hardest 2 weeks of my life up to that point. Glenn and I would spend 7+ hours a day by his bed, talking to him and holding him. I hated everything about him being in the NICU. I hated feeling like I had to ask permission to hold my own baby. It was a joyous day when we got to bring him home.

This picture was taken right after Caleb was born, this was the very first time I saw him.


This is the opening in Caleb's back. Some babies with Spina Bifida have a sac that covers the opening but Caleb didn't have that. I was so glad that Glenn was there to get this picture, otherwise I never would have known what Caleb's back actually looked like.



This is following Caleb's surgery. You can see how large his head was due to the hydrocephalus so the shunt placement was an absolute necessity.

 
Caleb's back after surgery.


Caleb's sweet little head after shunt placement. It was amazing how quickly the shunt worked, his head started getting smaller and smaller. Thank God for the man who invented the shunt!


I just think this picture is so sweet.


Finally Home!


So that pretty much sums up the start of Caleb's journey. It is now an 11 year long journey and one that I feel so blessed to be a part of. We have certainly had many ups and downs. Spina Bifida is very complex and it affects so many aspects of Caleb's life, not just his mobility.

Caleb is now 11 years old and in fifth grade. He loves birds and learning about birds. Seriously, he's kind of obsessed. And he knows his stuff, he can tell you anything you could possibly want to know about any kind of bird. It's quite impressive  He loves to read and he is really a fantastic reader. He's also a fantastic speller, I often have to ask him how to spell a word.  He plays wheelchair basketball and he absolutely loves it. He is a wonderful big brother to Benjamin.


You can't help but smile looking at this boy. I have days of sadness, times when I feel sad for him. But then I remind myself that Caleb isn't sad. He's not unhappy at all. If he isn't sad, then why in the world should I be? Life won't always be easy for him, but life isn't always easy for any of us. This kid is leaving a mark on this world and the world is better for it. I am better for it.


Caleb is absolutely amazing and an inspiration to me. I am in awe of all the things that he has accomplished. He absolutely blows me away and brings me so much joy. I thank God on a daily basis for blessing my life and trusting me and Glenn with Caleb. God must have seen something in me that I didn't see in myself because He knew that I could handle this (with His help of course). God gives me a peace that I wouldn't have otherwise. Our lives would be so different if Caleb didn't have Spina Bifida, I can't even imagine things any other way. I think about all the wonderful people I have met that I wouldn't know if it weren't for Caleb. My life has been touched by so many other moms that share the bond of having a child with SB.  I don't walk this road alone and that makes all the difference.



He loves WCMX. He enjoys flying down ramps and giving his momma a heart attack. I'm telling you this kid is unstoppable.




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