It's been a while now since I have written any advice for special needs moms. A lot of that is because my boys are both more than old enough to read and process the things I write and I am sensitive to how they perceive things. But the one thing I know for sure (in the words of Oprah) is that a special needs mom (or ANY parent) HAS to follow their gut. Its the one thing that you were given that is more valuable than any doctor has or any medical book could ever teach. I learned when my youngest (born with spina bifida) was just 4 months old that doctors didn't know everything about him that I did. He needed a shunt (a device that drains extra fluid off the brain) surgery and they kept saying no. They were experimenting, seeing how far they could push the limits. I knew what he needed in my gut and one day that I will never forget I packed him up and demanded they admit him for the surgery. Everyone thought I was nuts. Turns out my little guy who could never open his hands came out of surgery with them open. Right there I got my power and knew if I did nothing else in all of this mess I knew I had to follow my gut. In his almost 17 years there have been thousands of times when ...
An Open Letter to a Special Needs Mom
Dear Friend, Close to 4 years ago our friendship started with a desperate message from you for some help, some guidance, some information, something that would tell you all would be OK with your little girl. You know now that I get those messages a lot. But something in yours was different. You reminded me so much of, well, me. I picked up the phone and we began our friendship. Through the years I have given you lots of advice for helping your little girl. And in return, you have become a source of information for me as I began uncharted waters with certain treatments. Some days I am sure I offered too much information and you thought, clearly, I must be crazy but most things I have been pretty on target with.So I hope you will trust my advice now. I know you are scared and I know how you feel. And I know that there are very few people who can truly say that they understand your world. I do. I lived it and continue to. You are SO much like me when I was in your stage. So now I have some advice for YOU. Not for your daughter. This is just for you. So listen up because I wish someone had told me this years ago. In the 3 years of your daughters life you have gained ...
Special Needs Moms Sorority
I am not posting a PR Monday post today because I found this instead and as I am typing tears are running down my face. I didn't have a particularly fabulous Mothers Day. It wasn't for lack of trying on my husbands side. It was teenage drama and lots of work. But when I opened my feeds this AM, Laura's post just struck me as something I needed to share as a belated mothers day to all the Mothers in the Children With Special Needs Sorority. I hope every mom out there had a wonderful day and to my special 'sisters' I hope this brings you happy tears.To You, My SistersBy Maureen K. HigginsMany of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the internet, on playgrounds and in grocery stores.I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were ...