My heart breaks for my son...

Many times I have written this up and then decided not to post it for one reason or another. Maybe nothing needs to be said and then maybe everything needs to be said.Most people that know me, know that I have a son that was born with a Spinal birth defect. He was born with Lypomyelomeningocele. It is a form of Spina Bifida. This is a very rare defect. The link above has lots of really good information and definitions. Much more than I could ever tell you.


What I could tell you is what we have been through in the last 8 1/2 years. After Karston's first surgery at 10 days old, he progressed very normally. At the age of 2yr old we started to see his left leg and foot get affected. We took him to many doctors and they said that he would grow out of it. Just before he turned three we moved to the Chicago area and his new pediatrician sent us immediately to Children's Hospital. He then had to have two more corrective surgeries and started to wear the brace on his leg. We went through weekly physical therapy and had many difficulties in potty training. He still wears a pull-up at night. At age 6, Karston started a process of bladder stimulation. After several months of what Karston felt was torture, we found that it was not working for him. We then went to a catheter every 2 -3 hours and he now does this himself. He still finds it invasive and irritating that he has to use these methods. He is only 8yrs old so he is not really great at doing it when he is supposed to. Many kids don't understand that Karston is different and they ask him many questions. He often times doesn't know how to answer or just gets tired of explaining it so much. There is alot of emotional conflict for Karston and for us as his parents.



I have to say that I am very proud of my son and all that he can do and has done despite this disability that should be holding him back. For the most part Karston seems very normal and you would never know that he has had three surgeries and many different treatments. He does wear a brace on his leg, but it does not hold him back and after being around him for a small amount of time it will disappear in your mind. In fact he has broken many braces because they are not made to be able to withstand his abilities. He is an extraordinary young boy and I know that God has something Big for him, even when he doesn't see it.

Among all of the physical and medical parts of this journey, we have also had to deal with the emotional and mental parts too. We have had many talks and many crying sessions with him about what he has to do and why he is not "normal" like the other kids. Most of the time, he understands, but I can't help but see how his self esteem gets torn every time. He has a very gentle spirit inside and while that is what makes him loved by everyone, it is also why he so deeply hurts at times too. We try to balance the fact that we have to do what we have to do and constant questioning doesn't make it all go away, with the feelings of needing outside support (not pity) and understanding from other people that have gone through similar difficulties. It is hard to ask for help, but even harder to know who to ask for said help.


Our hearts are tired and our minds are not understanding of God's ways, but we will not give up. Karston's life is a blessing to this family and everyone he meets. By God's grace we will survive and we hope to impact other peoples lives along the way.

Please pray for us as a family to be able to support each other. This will be an issue that Karston deals with for the rest of his life and as a family we will need patience and endurance for whatever else may come.