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What Adopting My Daughter with Cerebral Palsy Taught Me About Being Strong

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Via Christina Smallwood

Most people don't know if they can get pregnant until they actually try. I learned that the hard way.

When my husband and I started to think about having a baby, we never imagined how difficult it could actually be. More than a year went by with no luck, and then, in December of 2012, tragedy hit our family.

My dad was in a motorcycle accident and ended up in a coma for four weeks before passing away. To say that I was in shock both physically and emotionally is an understatement. Understandably, it was months before we had the strength to try and have a baby again. Before we knew it, March rolled around, and we finally decided to have our fertility evaluated. (Related: What Ob-Gyns Wish Women Knew About Their Fertility)

The results came back a few weeks later, and the doctors informed me that my anti-Müllerian hormone level was super low, a common side-effect of taking Accutane, which I had taken as a teenager. Severely low levels of this crucial reproductive hormone also meant that I didn't have enough eggs in my ovaries, making it nearly impossible for me to conceive naturally. After taking some time to get over that heartbreak, we made the decision to adopt.

After several months and tons of paperwork and interviews, we finally found a couple that was interested in us as adoptive parents. Shortly after we met with them, they told my husband and me that we would become parents to a little girl in just a few months. The joy, excitement, and flood of other emotions we felt in those moments were surreal.

Just a week after our 30-week checkup appointment with the birth mom, she went into preterm labor. When I got the text saying my daughter had been born, I felt like I was already failing as a mom because I missed it.

 

Happy Saturday Friends  #beyourself tee:@meinmybetee + blooms:@miyaandma

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We rushed to the hospital and it was hours before we actually got to see her. There was so much paperwork, "red tape," and a roller coaster of emotions, that by the time I actually walked into the room, I realized that never got the chance to actually think about her premature birth. But the second I laid my eyes on her, all I wanted to do was cuddle her and tell her that I was going to do everything in my power to make sure she had the best life possible.

The responsibility of keeping to that promise became more clear when just two days after her birth we were greeted by a team of neurologists saying that they found a small malformation in her brain during a routine ultrasound. Her doctors weren't sure if it would turn into something to worry about, but they were going to monitor it every few hours just to make sure. That's when her prematurity really began to hit us. But despite all our family planning setbacks and hardships in the hospital, I never once thought, "Oh. Maybe we shouldn't do this." It was then and there that we decided to name her Finley, which means "fair warrior."

 

Last day of spring break means Mani/Pedi + Morning Yoga together @nubyusa

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Eventually, we were able to bring Finley home, not really knowing what her brain injury meant for her health and her future. It wasn't until her 15-month appointment in 2014 that she was ultimately diagnosed with spastic diplegia cerebral palsy. The condition primarily affects the lower body, and doctors indicated that Finley would never be able to walk on her own.

As a mom, I'd always imagined chasing my kid around the house someday, and it was painful to think that wasn't going to be a reality. But my husband and I always had hope that our daughter would live a full life, so we were going to follow her lead and be strong for her. (Related: Trending Twitter Hashtag Empowers People with Disabilities)

But just as we were coming to understand what it meant to have a child with "special needs" and work through the changes we'd need to make in our lives, my husband's mother was diagnosed with brain cancer and ultimately passed away. 

There we were all over again—spending most of our days in waiting rooms. Between my dad, Finley, and then my mother-in-law, I felt like I lived at that hospital and couldn't catch a break. It was while I was in that dark place that I decided to start blogging about my experience through Fifi+Mo, to have an outlet and release for all the pain and frustration I was feeling. I hoped that maybe, just maybe, one other person would read my story and find strength and comfort in knowing they weren't alone. And in return, maybe I would too. (Related: Advice for Getting Though Some of Life's Biggest Changes)

About a year ago, we heard some great news for the first time in a long time when doctors told us that Finley would make an excellent candidate for selective dorsal rhizotomy (SDR) surgery, a procedure that is supposed to be life changing for kids with spastic CP. Except, of course, there was a catch. The surgery cost $50,000, and insurance doesn't typically cover it.

 

I just have to share. WE DID IT! We are now a paci free house. I know, some of you are likely trying to recall how old Fin is right now, almost 4! The sensory of sucking was SO comforting to her, as part of her CP and I just couldn't take it away at 3 when I planned to, because I knew she would need it for her SDR surgery trip. So thankful for it, it helped so much during travel and the hospital stay. Then, there just never seemed like a good time- afterall she "only had it at night". Now I'm just over buying Paci's + Finley seems to have outgrown that need for sucking-sensory. It was 3 days of hell, honestly. Like she was an addict going through LEGIT withdrawals. I questioned lots of things. I was a mess. LOTS of tears between the two of us. Thank you for everyone encouraging me to push through it! She slept so great last night, woke up and was my pleasant daughter again. Praise Jesus! She's so proud of herself for giving her pacis to the paci-fairy, to other babies, exchanging one for a toy, and sending the broken one off to the paci shop. (We had to use all the tricks). She said, "I no have a paci anymore!" Such a big girl! Everyone has to do what is best for their families- no judgements here mamas! :@growlovelyphotography

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With my blog gaining momentum, we decided to create the #daretodancechallenge on social media to see if it might encourage people to donate the money we desperately needed. Initially, I thought that even if I could get family members and friends to participate, that would be wonderful. But I had no idea the momentum it would gain over the next few weeks. In the end, we raised roughly $60,000 in two months, which was enough to pay for Finley's surgery and take care of necessary travel and extra expenses.

Since then, she's also undergone FDA-approved stem cell therapy that has allowed her to wiggle her toes—before the surgery and this treatment, she couldn't move them at all. She's also expanded her vocabulary, scratching parts of her body she never did before, differentiating between something "hurting" and "itching." And most importantly, she's running barefoot in her walker. It's all pretty incredible and even more inspiring to see her smile and laugh through what might be the most difficult and challenging moments of her life. 

As much as we've been focusing on creating a good life for Finley, she's done the same for us. I'm so grateful to be her mom, and watching my child with special needs prosper shows me what it really means to be strong.

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