Next up in our What’s It’s Like series, I am giddy to introduce you to one of my dearest friends and fellow twin-mom, Charity Bish. Charity and I met on social media years ago and I will never forget her kindness in 2013 when I opened my front door to find a package from her containing her freshly baked and famous chocolate chip cookies to enjoy, sent from her then-home in New York City. Her heart is huge and her encouragement over the years has been priceless. Now she’s rocking the mom life and I was utterly delighted to meet her and her family in 2016. She’s as good as it gets!
Without further ado, here’s what it’s like to raise a child with special needs.
The morning of my anatomy scan, I got dressed quickly because I was so excited to see my babies again. I loved visiting the perinatologist because their ultrasounds were so much more in depth and they took longer so you really could enjoy watching the babies interact with each other. My mom and I drove to my appointment and I sat waiting in the room with several other pregnant women. I was so happy to be there.
When they called my name I walked towards the room and it was then that I saw another woman storming out with tears streaming down her face. I wondered what happened, then I started to pray. Please God, make sure my babies are okay. I sat on the table and joyfully lifted my shirt for the ultrasound and the technician started her measurements. All was moving well until she started measurements on the second baby. She measured over and over again in the same spot and suddenly I knew something was wrong. I sat up and asked her if everything was okay, she told me she would send the doctor in shortly.
Those ten minutes felt like days, and then the doctor walked in. No introduction just a matter of fact response “Your baby is missing a part of his brain, I am pretty sure its Dandy Walker Malformation, come back in two weeks so we can check again but I don’t think it’ll grow in.” I was stunned and couldn’t muster up a single question. With that, they wiped the goop off my belly and I left.
I returned for another appointment two weeks later and again I was met with poor bedside manner and told that my baby’s brain had not developed anymore from the weeks before. So I was then given the options to terminate the pregnancy or to face the death of my baby at his birth. I was so frustrated and hurt by the lack of empathy I received from this office so I switched doctors when they continued to pressure me about terminating these two precious lives. I just wouldn’t do it, I loved them both before I even conceived them.
For the duration of my pregnancy I held my breath as I went to appointments, had MRI’s, blood testing and ultrasounds. Finally at 38 weeks and 2 days I was officially in labor and preparing to meet my babies. While I was pregnant I savored every single moments because I was afraid it would be snatched away when they were born.
On December 12th, God heard my prayers. I delivered two healthy boys. Doctors were very confused as they expected one to be sick. But he actually scored higher than his brother did on his Apgar score. Still confused as to which baby had the brain anomaly they performed a head ultrasound on both babies to confirm which one had Dandy Walker Malformation. The doctors were completely stunned by the results. The one they thought was the healthiest was indeed the baby with Dandy Walker. My sweet baby stayed in NICU for 6 days to fight jaundice and to have an MRI to be sure he didn’t have hydrocephalus (water on the brain). I was so excited when they finally told me I could bring him home.
The doctors released him and told me which signs to look for to be sure he didn’t collect fluid on his brain. They also gave me followups for multiple test because they couldn’t understand how he was thriving. Around 6 months of age I decided against all the testing because he was growing up healthy and strong. I started to feel that the test were excessive and intrusive to his little life.
From birth until his first year I did not spot a single difference between him and other babies his age, his twin brother included. Then at 13 months his brother began to walk and we waited and waited for him to catch up. Finally at 16 months, my sweet baby took his first steps. It was then that I realized that he was going to need more help than I could provide at home. We met with his neurologist who was pleasantly surprised in all that he could do without his vermis. She did think it was a great idea to have him evaluated by therapist to see what help he would need. Getting the evaluation requisition form brought out a ton of emotions in me, all the while I treated my sweet baby like he was perfect and in my eyes he is. But the day I sought help for therapy it was like an admission that he was less than perfect, broken in fact, and I wanted him fixed.
Those were the lies that I told myself over and over again. “You should love him how he is, why change what God made him to be.” Then suddenly I heard a different voice, a wiser voice tell me “ You’re his mother, mothers want the best for their children, and he deserves a fair shot at meeting his full potential.” That day I took him to his evaluations all alone, only his father and I knew what was going on that day. After he was evaluated I spoke to a social worker that talked to me about him being a special needs child, and about me needed support.
As I drove home those words played over and over again in my head. “Special needs, Disability, Special Needs” I wanted to scream. After all the suffering to conceive and all the worry during my pregnancy now we would have this to deal with. My poor baby wouldn’t be seen as normal instead he would be seen as the kids with Dandy Walker. I didn’t want that for him but denying him services he needed wasn’t going to fix anything. He started occupational and physical therapy on May 22, a week later he was making major progress and we were all surprised. It was then that I realized help is good and this was exactly what he needed to thrive. Seeing his growth made me realized that I had grown too. I was excited to see my child feeling proud of his achievements and seeing how with my support he was meeting so many milestones. It was then that I realized that raising a child with special needs was not a curse, it was in fact a gift.
When its hard you don’t see it that way but when you look back on all that you have overcome there is a huge blessing in that hindsight. My sweet baby is three years old now, when he was a baby I used to think he would die at any moment because of what doctors told me. But here he is today thriving and growing in his own time.
Raising a child with special needs is exhausting, rewarding, challenging and very surprising. It completely changes all your expectations for your child and your dead set ways of parenting. And if you have another child you work even harder to make sure that your typical child doesn’t feel less loved or undervalued especially when their sibling requires so much of your time and energy. With my twins therapy is a family thing, both boys go to therapy and I work with one while the therapist works with the other. This way the older twin always feels included and it acts as a group therapy so the younger one does feel alone.
Now that my boys are a little older we talk often about meeting each others’ needs so that each one will understand that some days we will have to work a little hard at making sure everyone’s needs are met. This works really well on hard days when the younger one is overstimulated and having a hard day. My sweet baby boys are so good at communicating as twins that often its the older twin that tells me when his brother needs something. So we are also so in-tune with each other, just like when I carried them in my womb.
Raising my child with special needs has made me more open and a lot tougher. I don’t rest on anything that sends up red flags, recently a red flag popped up about his speech and he will be evaluated for that soon. My goal as his mother is to always put aside my pride and do what my child needs. No longer am I embarrassed or ashamed that people would think that his disability is a result of conceiving through IVF. I have since joined support groups and shared his condition with a few members in my family. Now I am not on this journey alone. I have also found myself in a position to share hope with others when they were given poor prognosis on the health of their unborn babies. I can use my sweet baby as proof that those test are not always right and even if they are – there is still joy to be found in each precious moment you spend with your child.
As I move forward in raising my little guy we have decided to homeschool him so that we are sure that he is getting the help he needs daily. Never did I think I would be the homeschooling mom, nor did I think I would be the special needs mom. If this journey has taught me anything its that flexibility is your best tool in motherhood because you never know what you’re going to get. Being flexible has helped me to appreciate exactly where we are in life and I look forward to the years ahead of us!