A Story of Hope for Parents in the Midst of Hardship
The last few years presented my husband, Josh, and me with some of life’s greatest challenges: Loss, Infertility, Adoption, Prematurity, Raising a child with special needs… Through it all, we had full faith that God would BLESS us with great magnitude one day. To be able to share our story and use all of our experiences to raise funds for a great cause is one of our biggest blessings yet. One I will forever be grateful for. I believe wholeheartedly that God allows us to have a purpose for our pain.
Growing up, I was completely ignorant of the special needs community. There wasn’t much awareness, and if I did see someone with a disability, it was taboo to ask questions. It wasn’t until my daughter’s diagnosis that I had that huge unveiling of what the world honestly looked like. It’s like I had blinders on my whole life before that. Although some people find it terrifying to live the way we do, I find it sad that people don’t always get the opportunity to see the world the way we see it.
It wasn’t until my daughter’s diagnosis that I had that huge unveiling of what the world honestly looked like. It’s like I had blinders on my whole life before that.
When Josh and I decided we were ready for a baby, we hit a wall after about 15 months of trying. And I mean trying: diets, schedules, charting, tracking, supplements, massage, acupuncture, and I even gave up baths. People told me “not to stress,” but that just made me stress about my stress. During this time, my father was killed in a motorcycle accident. He and I were very close. His death shattered my world and put extra stress on my body. Just a few short months after we buried him, we received news of infertility.
The first round of tests showed that I have low AMH levels, making it unlikely for us to conceive naturally, with a high likelihood of miscarriage. I was later officially diagnosed with Diminished Ovarian Reserve.
[My Father’s] death shattered my world and put extra stress on my body. Just a few short months after we buried him, we received news of infertility.
This news crushed my world (again).
Josh and I rallied though and turned (almost immediately) to adoption. We were matched pretty quickly and couldn’t wait to experience our daughter’s birth that following September. In between doctor’s appointments with our daughter’s birth-mother, I worked – worked – worked. I LOVED my JOB as a hairstylist, and it was a great way to bury my grief under busy-ness. One day on a drive home from working a beautiful July wedding in San Diego, I received news that our baby was coming sooner than expected.
Finley was born at 2 am the following day, 9 WEEKS early and weighed a miraculous 3.9 pounds. She was the most precious thing I’ve ever laid my eyes on and meeting her was the single most significant moment of my life. She suffered grade 3 brain-bleeds, and we didn’t know if she would potentially have a disability, only time would tell… My motherhood journey is why I started a “secret” Instagram account, which has since transformed into Finley’s Beautiful Story of Dreaming Big and Overcoming Obstacles.
When Finley arrived so early, it made things tight for us financially. We had no time to prepare or plan. I essentially quit my job behind the chair to spend five weeks in the NICU with her, which was such a precious bonding time for us. We spent the first year at home together, and I got to enjoy all of my time with my precious, medically-fragile preemie. I didn’t want to leave her, ever.
Finley was officially diagnosed with Spastic Diplegia Cerebral Palsy (CP) when she was 15 months old. Spastic diplegia is a form of CP that is a chronic neuromuscular condition of hypertonia, meaning her legs have a constant “tightness” or “stiffness.”
She suffered grade 3 brain-bleeds, and we didn’t know if she would potentially have a disability, only time would tell…
Upon starting my special needs mama journey, I met some inspiring parents that gave me unsolicited tips or advice. I soaked it all in, and I knew they could read the fresh dose of fear written on my face. At therapy one time, I had a mom tell me, “It ain’t easy, but my motto is: if your kid is smiling, then you should be too.” Looking back, I can’t even bear the thought of my baby smiling at me, knowing I was fighting back the tears of what could be. I wish I could have a chat with my past-self.
I’d say…
“Hey mama,
Life is going to get hard, but it’s going to be okay. Parenthood is going to look different for you compared to your friends. It could always be better or worse. Be grateful in each moment, even the ones you feel 100% alone. There’s no one to blame, and no one is blaming you. There will be a diagnosis, odds are many other labels, titles, and words will enter your life. Get comfortable with them, but don’t let them dim your light. Watch your baby girl grow and don’t worry about everyone else.
You are on a unique road, so don’t expect others to understand it. Some days you’ll want to be treated the same, some days you’ll want them to know that life is different for you and your family. This is the path of a special needs parent. Those words “special needs” don’t need to scare you either, I know you never thought they would be used to describe you. While they don’t define you, you will find comfort in them. It’s a journey that you will take one step at a time.
You’ll learn to live in the now, and in time, you will discover the beauty amidst this pain. You will adjust to the ups and downs and the possibility that today might be worse than yesterday, but tomorrow will be better. You won’t let this roller coaster determine how you treat others, and you will certainly teach your daughter the same. You won’t merely “survive” each moment; you will make the most of them. After all, this life is what you make of it.
You will celebrate every tiny miracle each day brings, and find yourself becoming best friends with your daughter’s many therapists. On the days you feel defeated, you will find a moment of joy and forget the whole day was challenging. You don’t need to feel guilty for being tired some days; you’re human.
Her progress doesn’t solely rely on you, and she will go at her own pace. Push her, but allow her to enjoy being a child. Follow her lead and be strong for her. Don’t compare her life to others; it calls for a completely different set of rules. Learn to adapt quickly and to speak up for her. You can do this; you can be your angel’s backbone when she is weak.
While you can control many avenues in your life, this one isn’t meant to be controlled. Her life is beautiful. Nothing can take away the love you have for her. Nothing! Don’t beat yourself up about trying to make everything perfect or easy for her… she’s a tough cookie. You will never “fix” the cerebral palsy, but you can teach her to adapt to the best of her capabilities. You won’t let CP own her. While you try to teach your daughter the smallest of tasks, she will be teaching you about the big picture. So, hold on tight and be prepared for the most amazing chapter of your life.”
Raising a child who had no control of her legs was hard…
MY HEART BROKE A LITTLE EVERY TIME SHE ASKED ME TO HELP HER STAND UP.
If I could give her my legs, I would. As a parent, there is nothing more devastating than watching your child suffer or struggle. One of the BEST things that happened to us was Finley’s loaner equipment. Her clinic offered it for us to use at home. It brought me HOPE. I was able to do MORE for my child, which is MONUMENTAL when you feel completely helpless. It also allowed me to begin documenting Finley’s journey to walking via our @fifiandmo Instagram.
It was THIS loaner equipment that allowed us normalcy. It allowed me to walk hand in hand with my daughter for the first time. It changed the course of our lives. It allowed me to believe that I could enjoy working again and that I didn’t need to be that helicopter mom, which was great for all of us.
Last year FIN AND I got the incredible opportunity to DONATE + DELIVER some walkers to kids who need them. Walkers are expensive, and sometimes insurance takes FOREVER and a year to approve it – and a year is just too long. I realized with each delivery that THIS is a true passion!! If I could deliver walkers or wheelchairs every single day, well that would be the best job ever!!!
Last month I was named one of 25 Gratitude Ambassadors for my company- where it is now part of my job to encourage giving and host my own fundraising efforts on behalf of Monat Global. How AMAZING is that?! Talk about combining passions and life experiences coming full circle.
I am so excited to get started and so grateful for Joni and Friends “Wheels for the World” for existing. I cannot wait to get started!
Guest post written by Christina Smallwood
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