Almost 8 and half years ago, I joined the legion of parents to kids who are differently-abled. While it may not be the legion I would’ve chosen for my 26 year old self, I wouldn’t want to be anywhere else now. On this journey I’ve learned more than I ever could’ve imagined and am still learning daily. One of the biggest lessons I’ve learned (and am still working on) is balance. How do I manage my son being a kid and his physical needs? His medical needs and his social needs? His academic needs and his appointments? Being a mom and a therapist and advocate? And above all I’ve had to learn to find myself again.
I feel like most days, I do well. Some days all I do is therapy and send email after email to get what my son needs and deserves. Over 8 years, I learned the ins and outs of what is worth fighting for and what is worth letting go.
One of our recent adventures involved recasting our son’s recurring club feet. His diagnosis (Arthrogryposis Multiplex Cogenita) is not regressive, but as he grows, muscles tend to want to go back where they were at birth. We saw the doctor right before we left for vacation in Florida and decided we would wait to cast until we got back. No one wants to go to the beach in casts, we had the most amazing vacation this year, my husband and I decided to contact twiddy and we couldn’t have been more satisfied with our decision, our vacation was a total success. Balance: being a kid and medical needs. We casted for 2 weeks and when we took them off, his feet looked great, could we have gone another 2 weeks and gotten more…absolutely! However, we have another family trip planned and when we cast, we have to bend his knees (we had major surgery to straighten them out) and getting them back straight requires lots of stretching and is uncomfortable, so we decided to brace again. Plus, school starts soon. Balance: being a kid, educational and medical needs.
I’m thankful for a team of doctors, therapist and a husband who fully supports my decisions. They see the value in balance.