How do I cope with a special needs child?!

I decided to post something I wrote to a mom on a Cleft Lip and Palate forum. She was struggling with how she was going to deal with surgeries and how to deal with the cleft emotionally. I was amazed at what I wrote. Sometimes, my answers are very contrived- often a repeat of what I have said before. This was the 4th or 5th post about people being rude, etc and the moms worrying and crying and being sad about the birth defect. I was ready to give my pat answer and then this just kind of developed as I was writing. I think it can be applied to any defect, disorder, syndrome or challenge you face with your exceptional kids!

I don't know exactly what to tell you either! I cried like a maniac for 3 hours straight after we found out around 22 weeks. Then, I was done. He had other defect, so there were ultrasounds and echo cardiograms to go to and amniocentesis to be done, appointments to make. I looked online at kids with clefts and I was really happy how their repairs came out for the most part. I was really encouraged.

After he was born, I was just elated! We had 5 days in NICUs and the children's hospital and then we were home. I loved it! I loved having him. I really never felt sad about it for years after that! He just seemed to fit into our new little family. Everything seemed to work.

I cried again last summer when we found out he has chromosome 22q11.2 deletion, later diagnosed with VCFS as the syndrome associated to the deletion. Again, just fear and sadness at not knowing exactly how this will play out and how it will impact him negatively. Not long after, he was diagnosed with a platelet dysfunction and Von Willebrand's Disease. So, from now on, he has to have DDAVP and a platelet transfusion before every surgery. Yikes! We have at least 3 more to go, if not more!

At first, I felt sad about all the new diagnoses. But now everything fits, everything is explained and there are talented professionals "assigned" to each diagnosis! I honestly don't know what I am going to do with myself when there isn't speech therapy, occupational therapy, appointments, surgeries and complications to take care of! I am back to feeling like he fits and this is our life. There are still days that it stinks! Days my heart hurts as I watch my SEVEN year old struggle to open the front doors to the school. But, there are days I am happy. Days when he says a sentence that I understand without even having to think about it. Days where his teacher tells me all the kids in class couldn't wait for him to get back to school after surgery. Days where some boy we don't even know stops to make sure my son gets through those big heavy doors at school. And we have SO many more of those than the bad days!!!It is a highly personal journey that we all have to take. You will find a place where this fits for you and you are finally comfortable in it! Hang in there!