Special needs mama

I often get messages from parents who recently found out that their child is CMV+/deaf/microcephalic, & my heart breaks each & every time. It’s hard to hear their stories, I understand their pain & the struggles they’re going through. I vividly remember being in their shoes at the beginning of our journey. 

•I remember going into the MFMs office for an ultrasound at 27 weeks. The ultrasound tech focused on his brain, it felt like an eternity, but in reality it was probably about 20-30 minutes purely on his brain. The doctor came in & told me he had mild ventriculomegaly. 

Told me everything else looked great, & not to worry. I did though, & suddenly my entire world turned upside down. From that moment, I didn’t sleep. I googled most of the time looking for answers, answers that never seemed to have a happy ending. 

•I remember Malakais 2 month check up, his PCP checked his head 3 times, & then explained to me that he had microcephaly. I said I was ok, but once I got home I googled, & was full of despair & felt so incredibly hopeless about my sons future. 

•I remember the first time the audiologist told me Malakai had hearing loss, & the extent of his hearing loss... I held it together, until I got into my car, then I fell apart. I cried & I was angry. I didn’t understand why him. My mind went straight to his future, all the challenges he’d have to endure, the potential bullying he’d eventually face for being “different”. I worried about him feeling like an outcast for being the only one in our family with hearing loss. 

•I remember the day we got our CMV+ diagnosis. After a ton of support, someone lead me in the direction of CMV being the possible cause for Malakais disabilities, so I asked his doctor to run the test.

 

I knew it was a possibility but I was hopeful he’d be negative. Unfortunately he was positive, & my heart shattered. 

Again, I held it together in the doctors office, but once I got to my car, I fell apart. Why him? What did he do to deserve this? My mind went back to his future. What kind of life would he have with this awful virus coursing through his veins? I remember thinking one too many times about him dying because of CMV, & it terrified me. 

These 4 moments were earth shattering for me, but they have shaped everything not only for Malakai, but for my entire family. We have had to learn & adjust.  

If you know me, you know I’m not an optimistic person, I’m fairly pessimistic.

During my pregnancy with Malakai, I was so pessimistic I kept him a secret. I kept him a secret until the day we we were discharged from the hospital & they “cleared” him saying everything looked great, & even after saying he looked great... I was still pessimistic, but as new things have come up, I’ve learned when it comes to Malakai, I couldn’t be that way. 

I had to be proactive & optimistic. Ultimately, I’ve had to fight for him. 

So I got on medication, because it was so overwhelming, in such a short amount of time & I could not process everything I was being told on my own. I felt like I was being swallowed by guilt & depression. I had to do everything in my power to be ok, in order to make sure he was ok. I couldn’t allow the weight of my pain to get in the way of him having the best medical care, & the absolute best life. 

It’s been almost a year since his initial diagnosis, & it is still hard. I cry some days. I feel guilty, & I still have negative thoughts at times but I don’t let it overwhelm me. I don’t allow the negative to overpower all the positive in his life.

I get told all the time that I’m strong, but not in comparison to him. He is so strong & resilient. His life has been great, & he’s always proving everyone wrong. 

He’s deaf, but he talks. A LOT. 

He has a few brain abnormalities, but HE KEEPS PUSHING. 

He has muscle tone problems, but he works through the pain & uses those muscles. ALL THE TIME. 

I want you to know, if you’re new to having a baby with medical problems, it’s not the end of the world, even if it feels that way. I know it feels that way, you expected a different life with your baby. You expected society’s version of “normalcy”. Your life won’t be normal, but you’ll create your own “normal”. It will take time, but once you get there, I promise it will all be so incredibly sweet. The good & the bad. The bad times will make the good times so incredibly important. That baby’s life will be tremendously valuable, each & every milestone will be sweeter because you were given horrible outcomes. As you watch your baby overcome challenges doctors assumed they wouldn’t be able to, it will be joyous. 

You both will overcome this. It will get better with time, & until it does I’m here if you need anything. I’m here for you during the bad times, & I’ll be here for you during the good. You don’t have to know me, you could be across the world, I will still be there for you. 

It’s ok to be sad. It’s ok to have bad days, even terrible days. IT’S OK TO TAKE A BREAK, because this life is hard & there will be moments it truly breaks you. But, the most important advice I can give you... Is do not to let the negative overpower all the positive in your life.