happy love kids

I think I have shed many more tears than my son. I think I dwell on what he isn't able to do way more than him. I think I freak out about the future more than he ever will. I think I am the one constantly feeling guilty that he sits in his wheelchair too long, hasn't been stretched for the day or needs to take a bike ride. Brendan is perfectly content sitting in his wheelchair. Some days I wish he had more drive. I wish he had some motivation. I wish he would ask me to get up and walk, take a bike ride, go in his stander or to go on the vibration plate. It is all me all of the time. I always have to ask or tell him that it is time to get out of his chair. MOST of the time he doesn't fight me. He enjoys working out and loves going on bike rides. Some days he isn't in the mood or doesn't want to get off of his computer but he is 15 so I totally get that! The other night as I was thinking of 1000 irrelevant things instead of going to sleep I realized something. I real...

Why must our country have ridiculous insurance hoops that we must jump through? Why must it take months to receive an item approved by insurance? Why do people suddenly help you when you offer to pay out of pocket? Brendan's wheelchair had a serious issue this past week. He came off the bus with a completely broken foot plate. Not only am I still extremely annoyed that I never received a phone call, text or email regarding his broken foot plate but I also couldn't get through to the mobility company. I never even got the full story about how it broke off even after asking multiple people. The only explanation I ever received was that "it just fell off". I don't think that is possible but since no one will tell me what happened in PE that day I guess I will never know. So my son gets off the bus with his foot dangling and my husband immediately went into Macgyver mode. I called National Seating and Mobility immediately in order to get a replacement and of course th...

Most of you may know my birth story. It will forever be ingrained in my brain and it isn't a happy memory. I was ignored, I wasn't examined and I was sent home after only having a non stress test all to be rushed back by ambulance with a partial placental abruption. If only my doctor or the nurses listened to me just hours before my son could have been born healthy. Instead he was born blue, had to be resuscitated, intubated (twice due to the wrong tube size) and then brought to a different hospital with a level 3 NICU. Here is some great information to help you understand how a birth injury can effect your life forever. I know first hand because Brendan has brain damage from loss of oxygen due to medical negligence. I fought and won and am able to give my son the life he deserves. It isn't an easy process but it is worth it. I am so glad that I went through the process because raising a child with special needs is extremely expensive. Check out Birth Injury Lawyers Allianc...

In 2 days and 2 months from today I will be a mother of a 16 year old. I am not sure how that happened. How has life gone by this quickly? How have I been a mother to a child with cerebral palsy for 16 years? How have I survived the stress, grief, appointments, therapies and all of his behaviors? How have I learned to cope and love and even come to enjoy his idiosyncrasies? Somehow I have. Somehow I have made it this far. Somehow the future is slightly less scary. Somehow the tears have become farther and fewer. Somehow I have reached 100% acceptance. Somehow I have become stronger and wiser. Somehow it will be 16 years or 5,840 days of living a life that I never imagined. He won't be getting his learners permit, he won't attend school dances and possibly not even prom (he doesn't like to), he won't have best friends like I remember but he will have the best life I can give him. I will never stop doing what is best for him. 16 seems like a turning point. I remember coun...

This was our first visit to an abilities expo. I was oddly excited. We really enjoyed it and spent a solid 4 hours looking and trying out everything. Brendan was a little overwhelmed. He handled it great and tried out bikes, power chairs and the chill out chair. School has been pushing for a power wheelchair for Brendan. I knew that I wanted him to have one when he turned 18 but I am realizing he may need one sooner. In his high school they start to go out into the work force. They actually go to work for part of the week as they age so this is something he will need before adulthood. I had my heart set on the Permobile standing power chair. I wanted to see all the other options before he trials one. I am a little torn. I loved the Rovi x3. The size, the features and the look of it. Brendan did really well driving them around. One gentleman even commented that he picked it up very quickly for a first time user. I was really proud of him today. He tried everything out without any attitu...

I always want to come here yet never have the time. I honestly do not get any time for myself. Having 5 kids and their sports and therapy all while running a business leave very little time for me. Brendan joined Drama this year as well as basketball. Some days he had both! He was in a school play (very small part) but it was so great to see him part of something like that. He absolutely loved it. They did Little Shop of Horrors and it was an excellent play. His siblings wanted to watch it multiple times and then we had to rent the movie. Brendan's challenger basketball team won the state champs! They rode the bus back to school with a police escort. HOW COOL?! Brendan has been growing like a weed. He hit 5' tall which means he is catching up to me! His knees became crouched so badly again that I knew he needed SPML, again. This was his 3rd round. Although his spasticity is gone he still has some tone issues and his tendons don't grow properly due to having spasticity for 1...