I stopped wearing mascara..
The twenty week ultrasound is the big moment that everyone waits for. That moment after weeks and weeks of waiting where you finally are able to see your sweet little baby that is growing inside of you. Will you be having a boy or a girl?! Those are the big questions that you need answers to so you can start painting the nursery and buying cute little clothes that will only fit for two weeks. It’s funny how you love this child so much before you even meet them. They are a part of you before you can even see their face.
Love sure is a funny thing sometimes.
We left that ultrasound room with those answers, but we also left with many, many more questions. This exciting pregnancy roller coaster abruptly turned into an emotional freight train without any way of stopping it.
Our sweet baby girl was developing with something that looked like club hand from what they could see on that scan. The info that we were given was pretty vague and rather open ended. Because we did not receive much direction at that point, I went to Google for help. (NEVER go to Google. Do you hear me?! NEVER! All that the search results show you are the worst possible situations. They never show you the beautiful faces behind these big scary words that you have never heard before. They don’t show you the perspective that you gain from these beautiful children and the joy that they bring to your life. Google is good for many things, but looking up your child’s potential diagnosis is NOT one of them.)
Shortly after this twenty week scan, my husband Joe and I started going regularly to the maternal fetal medicine office where we had countless ultrasounds. Little did I know that this was the place that people go where bad news is handed out like candy (for many at least). I have to be honest. I was scared to death. Life stopped for a while and my world seemed like it was slowly falling apart. All that our selfish minds could think was, “why us?”. To our small minded selves this seemed like the end of the world. Life was spinning and we were standing still. Doctors were talking to us about abortion, what life could look like, and her eventual prognosis. It’s funny looking back now though. I truly believe that doctors have such great intention and are so wonderful and helpful, but sometimes, sometimes they simply just give us the things we need to pray for.
While I was still pregnant, I decided to start blogging about this experience which ended up being a decision that changed my life. The blog, called Gabriella’s HOPE, ended up being my eventual healing. The outpouring of support was overwhelming. I began to heal and because I began to heal, so did my family. We started meeting with families who had children that were “different” and started noticing something. They were happy. They were normal. And most importantly, they were ok.
I have since stopped blogging there (only because of a lack of time) but continually keep up with advocacy posts and updates on Instagram.
Before she was born, we met with one surgeon that is still a huge part of our lives today. Her words will forever be with me and comforted me when I didn’t even know I needed them yet. When talking through what was to come, she told me “None of this is your fault”. I hadn’t realized it at that point, but those thoughts were weighing heavily on me. As a mother, you carry all of those burdens on yourself thinking that you may have eaten something wrong, taken the wrong medication or not done everything perfectly. In reality, it’s not your fault. It wasn’t my fault either.
When the highly anticipated day came, almost five years ago now, Gabriella Hope arrived. She was absolutely perfect. Her sweet cry made my heart sing, knowing that my girl was here and I could finally care for her. Shortly after her birth, we were told that she was profoundly deaf in both ears which we would later find out was due to the shape of her cochleas. She also had two small holes in her heart along with Duane Syndrome which is a condition that has to do with her eye movement. I remember this like it was yesterday. My husband and I put on our poker faces, walked out of that office and into the bathroom. We sat there together and just wept. Wept for her, for us and for the unknown. All of those feelings that we thought we had rid ourselves of came rushing back. So many things raced through our minds. How would we communicate? How would we teach her that God loves her? How would we teach her that we love her? HUGE questions with no ideas of answers for this tiny new baby. When we were finally able to compose ourselves, we hugged and decided that when we walked out of that bathroom we weren’t looking back. We were going to go forward Having Only Positive Expectations, just as her middle name implies. So that is what we did.
We quickly learned more about cochlear implants and decided they were the best option for us and our Gabby. We ended up at the University of Michigan with a surgeon that we had full confidence in. On the day of the surgery, we were at peace but also a ball of nerves. In the end, Gabby only received the implant in her right ear because the left was not implantable due to her anatomy which was a huge setback.
It seems like, at every turn, there was something new that popped up. Another specialist we had to see, something wasn’t working with her therapy or we had to pivot and change routes all together. Each pivot was a huge heartbreak. I found myself crying more and more….and not always happy tears. Quite often those tears were just simply from exhaustion and being overwhelmed. I stopped wearing mascara in those years because the tears would just wash it away….
But behind those tears there was also so much joy. So much victory and triumph. We didn’t have clear expectations for Gabby, so watching her roll instead of crawl was something to cheer about, watching her take her first steps to her dad at two and a half years old was something to cry happy tears about! Eventually, hearing her say her first words at four was something to cry loads and loads of happy tears about.
After her cochlear implant surgery we faced more surgeries, endless appointments, moving to a new county to access the schooling that she needed and basically turned our lives upside down. Unfortunately, Gabby’s cochlear implant wasn’t as successful as we had hoped it would be. Another pivot. Our biggest goal throughout all of these years was that she would be a fully oral communicator, not needing her hands to communicate at all…which wasn’t her luck. And which was the reason we moved in the first place… Gabby’s speech pathologist at UofM told us about something called Cued Speech which literally changed our lives. We fell in love with the ease of the system, the access that it gives you to the world, the access to high levels of literacy and we loved that you can even cue other languages including accents or dialects. This is now Gabby’s form of communication. After almost four years of no speech, Gabby now has a receptive vocabulary of over 100 words. I mean, praise the Lord for that!
While living most of our journey out publicly on social media, we have been able to meet SO many families who have faced similar situations across the world. We have a sweet friend in Poland that we sometimes write to (we have to use Google translate – Yay…Google has redeemed itself haha!), we have Gabby’s “arm twin” just south of us in Georgia who we send her altered clothes to after she has grown out of them and we now belong to two communities that have welcomed us with open arms, the Lucky Fin Family and the Cued Speech community.
Being able to help others make their way through the special needs maze has made me realize my calling and given our family a new sense of compassion. So many people have to endure so much which makes our little inconveniences seem so insignificant. If we can be positive then maybe our little corner of the world can be a beacon of hope and light for others.
Gabby is thriving, growing and excelling. Our family is happy and more than ok. Our perspective has been changed and that is more than a gift. We seriously wouldn’t change it if we could.
I still don’t wear mascara but it’s mostly because of happy tears these days. <3
xoxo – Kellie
A few very special organizations that I need to include that have been a huge part of our lives are:
Mary Free Bed Rehabilitation Hospital – Center for Limb Differences | Helen DeVos Children’s Hospital | University of Michigan – Cochlear Implant Program | The Lucky Fin Project | National Cued Speech Association | Kent ISD Oral Deaf Program
(If you are a special needs family that would love to update your family photos, click here for more info and click here to contact me! I’d love to even just chat if you’d like. Community is the best medicine!)
add a comment