I found out I was pregnant at six weeks, then boom, the ultrasound tech found twins! I was in shock. I had an ideal pregnancy up until 27 weeks when I went into preterm labor. I was able to keep the boys in until 31 weeks 6 days, and they were born at Banner Desert Medical Center in Mesa.
Weighing in at 4.1 and 4.3 pounds and nine weeks early, we understood we would be navigating delayed development due to them being preemies. The only complication to add to the mix was Baby A (Connor) having less cord blood flow than his brother’s, but we didn’t think anything of it, and neither did the amazing medical team we had.
Receiving a diagnosis at PCH
Flash forward to a year later we received some devastating news. Connor was diagnosed with mild cerebral palsy. We found this news out from a developmental pediatrician at Phoenix Children’s Hospital.
The staff at PCH is truly an incredible team who supports parents navigating diagnosis for the first time not only with facts and information, but also focuses on the emotional and mental processing of it. (If you ever find yourself in a patient room at PCH, take a deep breath and know that you are in the best place for not only your child’s health but the parent support as well.)
Identical, but differently abled
I do wholeheartedly believe if I went full term with my boys Connor would be severely handicapped. I consider us “lucky” to have had such preemies.
Both guys were slow walkers, Ethan our typical guy didn’t walk until he was two, and Connor walked at the age of four! (I can still remember getting the text from our amazing physical therapist back then when he took those first steps!) Connor still relies on a walker for more strenuous walks (long distances, at school with a heavy backpack, etc.), and uses an ankle-foot orthidic to support his ankles. He proudly explains them as backwards shin guards.
After much research and chatting in depth with fellow special needs moms, we chose to travel to Houston, Texas, when Connor was four for a specialized surgery that only two doctors in the U.S. routinely do for children with cerebral palsy. (It’s called a SPML surgery.) It was the best decision for us, and positively impacted his lifestyle drastically, giving him more flexibility and improved mobility.
Arizona resources for kids with Cerebral Palsy
AZEIP is a state-run, early intervention program for Arizona residents ages birth to three with disabilities or delays. It’s a DES government-funded program to help kiddos like Connor and others with varying disabilities. I highly recommend early intervention; our kids started at 18 months.
We still do weekly therapies with a physical therapy assistant. I will admit, these therapies are hard on the whole family. It is a time commitment—between both my husband and I working full time jobs (on a four-ten schedule none the less), school and extra-curriculars, you can imagine it’s not a fun thing to have on the calendar every week, plus sometimes Connor doesn’t want to go weekly.
We do have one thing on the weekly calendar that Connor always is thrilled for: baseball practice. We are grateful for Miracle League of Arizona (a baseball league for kids with special needs) to provide him with an outlet for a sport he loves.
Not feeling left out
It has been tough as a mom with a child that has special needs because Connor can’t do everything that “typical” kids can do and I don’t want him feeling left out.
For example, it’s hard for him at a trampoline park or anywhere we have to walk far distances (we do have a stroller for this).
At times, I’ve felt as if other moms have not invited us to outings or activities because they know about Connor’s needs. It has been a tough road to navigate but we are learning each day.
Connor is the most caring kid I know. He is always making sure others feel welcome, and that they are doing okay. He has a lot of friends at his school. He thankfully has not dealt with bullying yet in his life, but as a special needs mom, I fear this in the future since he does have a different gait when he walks.
We’re eight years into parenting a kiddo with special needs, and I’ve learned so much from other moms who have gone through similar experiences. One reason I joined the EVM team is to hopefully share our learnings with new moms as they navigate phases of twin mom life, and Cerebral Palsy parenting.
If you have any questions, or feel alone in your journey of parenting, please reach out!