Showing posts with label Sensory Processing Disorder. Show all posts
Showing posts with label Sensory Processing Disorder. Show all posts

A Beginning!




Hi, Everyone!!! This is a new blog for me. I thought I'd get into writing from the heart of a Mother. I am a Mother to a very special, special needs child. My son has many challenges before him, but he hits them head on one at a time. I love him he's my precious gift from God. His special needs are as follows although I do not let these define him. He has Sensory Processing Disorder, Developmental Motor Coordination Disorder, Dyspraxia, Hypotonia, and Aspergers. 

There is one that he and I share together is Osteogenesis Imperfecta. The last one Osteogenesis Imperfecta we have a funny beginning. Our son was eight years old at the time, his school nurse told me that she thought our son was fracturing way too easily. She then recommended that we have him seen by his pediatrician. I set the appointment and we were off. We went they sent us out for an x-ray from his current injury than after we returned to discuss the next part of the protocol.  We were then directed to a nephrologist, a kidney disease, and transplantation physician. We were a bit more frightened now being directed here. How much more serious is this we thought. Well, we found out that Osteogenesis is a fatal disease. Now, the funny begins, yes you heard right "the funny". The doctor calls me over to where our son is on the table to take a look at his eyes. Our son speaks up and says, "My Mama's eyes are blue too." The doctor says, "That's nice, but I am talking about something different". Here comes our son back at the doctor; "Ok, but the whites of her eyes are blue too." Yes, he did just say that. Ooops! Bad idea here comes that little light, you know the one, the famous one that likes to blind you when the doctor says "let me look at your eyes". Yes, that one that one came at me quickly. The doctor told me to look up, look to the side, look to the other side, now look down. Yes, I think you have it too. You need to see your doctor as well. Here have your doctor run these tests on you. I took the list of tests that he wrote and took them to my doctor, sure enough, my doctor added more tests to that list. After eleven vials of blood and a bone density test, my doctor came back and told me that I too have Osteogenesis Imperfecta. This was difficult to accept all together at the same time. I felt overwhelmed. I didn't know if we were going to be ok. They told us that this is fatal. We have a bigger God who is in control. He has been with us throughout this journey. He's shown me ways to help our son understand the disease from his point of view, but also to teach him what it is like at an adult point of view. While some of you may disagree with doing things this way. This is a disease that he's going to live with for the rest of his life as am I. I wanted him to know from both points so that when he grows to adulthood he wouldn't have surprises in the waiting for him. I didn't think this was fair to do to him. I would want him to know and be comfortable when he got to this point. We are a team and now we do things together. He goes for infusions I go with him and spend endless hours and days at the hospital to be with him and he does the same with me. Not only do we have that special bond and Mother and son, but now even closer bond with our both having Osteogenesis Imperfecta. If the moment you're in is a blessing or a challenge, realize that you're alive and one day God will call you home. Take each moment and find the blessing within that challenge. I say that because with the OI this is something to find a blessing can be challenging. I must say that a friend of mine sent me a shirt that says the following,"I am an Osteogenesis Mom, just like a regular Mom, but only cooler". This may sound strange or may be taken in a wrong way. The way that my friend took this was that she looked at my personality and how I was taking the OI - she said this is so you - you are so positive and fun. The shirt to me I took as the "cooler" part is we always have something going ... friends have laughed when I break because I say something like "Oh, I just went snap, crackle, oops!" So now you can see that the shirt fits me. I appreciate your stopping by. I will let you go now- enjoy your day. May God be with you - spend some time with HIM.


Have a great day, Moms!