4 Years in the Making

4 Years in the Making..................It has taken us 4 years to get to our new normal.

Over our lifetimes we are constantly changing our normal lives. For example; when you go from single to married and then from childless to many children. When you move to a new place or get a new job. Some peoples new normals can take a couple weeks to get use to while other normals can take years. Some people always have easy transitions between normal and others have very difficult transitions. Also everyone has different normals.

4 years ago today our lives changed. It wasn't by choose and came as a surprise. It was not a wanted changed. And it has been a very hard change. Our last transition to our new normal has taken us 4 years to adjust to. So now instead of just the worry of where to live because of school districts, we worry about the house being handicap accessible, does the weather effect Joey's body and attitude, does the school district offer special needs services, what kind of therapy does that city provide. Also do I buy a SUV or Mini Van for the family, instead we think is it wheelchair accessible, how many kids can fit in the car, and will a larger wheelchair fit when Joey grows. We don't just worry about saving for college, we also worry about saving for therapy and equipment that insurance doesn't cover and medical bills. We choose Pediatricians, Orthopedics, Neurologist, Gastrotologist, and Opthamologist based on if they are familiar with special needs kids. We don't just make an annual Peds appt., we make annual Peds, Ortho, Neuro, Gastro and Opthamology appts. We get new AFO's and leg braces every year. We are constantly filling out paper work for CCS, Medi-Cal, IHSS and IEP meetings. We always have diapers to change and special feeding chairs and medical beds, special supplements and food to make. We don't go to baseball or basketball or football practices, we go to therapy.

So with all this said you can see how it has taken us 4 years to transition to our new normal. I can't say time has made it easier, just different. We still have 10x the amount of worries, but we do get to smile a bit more nowadays.

OK now a little about Joey. Joey has come a long way over the last 4 years. He is able to be put in a sitting position and can sit independently from 5-20 minutes. He can bare weight on his legs and hold himself up for a few seconds. He can run in his gait trainer at school and can reach and touch objects when asked. He can eat anything and everything now. He can roll over from his tummy to back and can even say some words. He can see out of his peripheral vision and is getting glasses this year to help with his central vision. He understands everything and even has his own way to let us what he wants.

I still think often of the Joey that was taken from me 4 years ago, but they are great wonderful memories and I am glad I have them.

The following is a video of Joey over the last year. Enjoy!