The first few years after Scarlett got diagnosed with a Platelet Storage Pool Disorder (PSPD), I was sure she was never going to live a normal life. Being told your 2-year-old has a life threatening condition and that you would have to keep her safe and free from injuries, proved to be harder than I imagined. Throughout her preschool years, we were faced with countless trips to the doctor and emergency room over injuries that I eventually learned I could not prevent. Proof that Scarlett bruised immensely and the doctor’s constant fears of head injuries had me feeling like I was going to have to keep my daughter in a bubble for eternity.
After attending the Hemophilia Foundation of Northern California’s family camp last winter, Scarlett came back expressing a need for change. It was apparent that she was growing into the next phase of her bleeding disorder. She was craving a sense of independence and was tired of being under so many restrictions. Our family slowly learned to step back and let Scarlett explore her world without us breathing down her neck. It was something that took a lot of getting used to, and one we still have to work on, but we have faith that we’ve given her the tools and knowledge to make safe decisions on her own and is learning to manage her bleeding disorder.
Watching Scarlett become her own protector has been amazing. She’s more and more aware of her body, her surroundings and is learning to make safe choices all on her own. She spent a lot of time this last year focused on swimming, which has become one of her favorite past times and quite a moral booster. This summer’s swim class graduated her to a new level and the freedom she feels in the water brings tears to my eyes. I think it’s one of the only environments she feels completely in charge. No one is telling her to be careful or slow down — she just gets to swim.
In August she was fortunate enough to participate in a swimming contest at our local summer vacation spot and was introduced to the notion of swimming as a sport. She won third place, a feat she was more than proud of and one that left me the proudest Momma on the beach. It’s times like this that my heart literally fills with joy. It’s so wonderful to see her beaming from ear to ear with such a feeling of accomplishment.
Having exposure to new activities and (not always getting hurt) has given Scarlett the courage to do things I thought I would never see. Bike riding has always been something that Scarlett enjoyed doing, and in all honesty, wasn’t something I ever really pushed. But, I’d been scared to go through the process of teaching her how to ride a two-wheeler for too long and it was time to conquer our fears and let her ride a big kid bike. The awkwardness of her lanky body on a bike with training wheels could not be ignored. So in June we headed down to the grassy playground around the corner from our house (where if she fell, it would be a softer landing) and decided to teach her how to ride without training wheels. We were all a little reluctant at first, but within two days she was riding like a pro – savoring her freedom with the wind blowing in her hair. The look of excitement and pride as she peddled those first few seconds, all by herself, is a memory I will hold near to my heart forever.
She has definitely had her fair share of injuries that have gone along with learning how to ride her bike. By day three, her legs were covered in bruises from brushing up against the pedals and balancing the bike against her body. I had to invent some leg warmer-cushions for her to wear, which helps a little. Several weeks into riding her two-wheeler she had a huge fall, resulting in a busted up chin. We’ve had to treat her twice since she started riding on two wheels and I was sure when she fell that she would lose interest, but we encouraged her to get back on, and not let her past injuries prevent her from trying again. Soon after her chin healed she was back on her bike and ready to ride. I’m finding that she feels the fun is worth the fall, so I’m trying to embrace that way of thinking.
Scarlett started second grade in July and her IEP & 504 plan for this year with minimum restrictions and she’s finally able to participate in most activities with her peers. Scarlett has always been active and has become more of a risk taker the older she gets. She has been climbing on play structures and engaged in sports since she was able to walk. And although finding sports that Scarlett enjoyed and were safe proved to take some time, we’ve finally found some we all feel comfortable with. She’s involved with a safe one-on-one gymnastics coach, swimming, loves dancing, golfing, biking, climbing on play structures, and is always up for a new challenge.
So, I guess it’s finally safe to say we’ve graduated to the next chapter in Scarlett’s bleeding disorder and we couldn’t be happier! I know there are people that believe I’ve kept Scarlett too sheltered, but I just had to get to a point where I could trust that Scarlett would try and make safe choices and not ignore signs of an injury that should be treated. Four years after her diagnosis and a dozen life lessons later and I finally feel like we have gotten to that point. I can actually breath when she’s doing something active or not in clear view. It’s taken us a few years to get here, but I’m so thankful we learned to take it one day at a time. She knows now that accidents happen, but that making safe decisions can prevent them and that there are important steps to take after one does have an accident. I am excited for this new part of Scarlett’s journey and look forward to whatever the next chapter may bring.
Kari lives with her husband, Ryan, and 6-year-old daughter, Scarlett, and 2-year-old son, Walker, in California.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers