Skip to main content

Infusing Love:Her Own Protector

A piece I wrote for HFA's Infusing Love. Originally posted on August 19, 2015

Infusing Love: Her Own Protector

August 19, 2015
Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.
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.
kari_bike_daughter_MomsBlogHaving 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


For more stories I've written for HFA's Infusing Love blog, please check out. . . 

Labels:

Comments

Post a Comment

Popular posts from this blog

2020, you suck! Her introduction into womanhood wasn't supposed to look like this......

2020, what a year. It seems appropriate that Halloween weekend during the pandemic would end up being when my little girl become a woman.  Friday October 30, 2020 It started at 12:35 pm on a Friday. Halloween was the next day and my son's school was having a safe-distance trick-or-treating event that we'd been anxiously awaiting to attend. This would be the first time either of my kids were getting invited to come onto one of their campus' since the school year started. So, we were dressed in our Halloween outfits and ready for a fun filled day.  Keeping on her brave face as we rush out the door. We were rushing out the door, late as usual. Since the pandemic... we've definitely taken advantage of having a minimal schedule and being on time hasn't become our strong suit. Scarlett came running up to me whispering “ Mommy Mommy, when I wiped there was blood. ” I scurried her back to the bathroom to the assess the situation and assured her she’d be oK. " This was
Post a Comment
Read more

PSPD 101- What is Platelet Storage Pool Disorder

Hello, My name is Kari Peepe and in 2011 my daughter and I were diagnosed with a platelet storage pool disorder. After several years of researching and going online to find men sharing their stories about hemophilia, but never women talking about platelet disorders. . . I decided to start my own personal blog, A touch of Scarlett. This has become a place where I share stories about our life with a rare bleeding disorder, spread awareness and hopefully empower others to help me in the fight for a better treatment plan.  1- What is PSPD? PSPD is as autosomal inherited disorder (like Cystic Fibrosis) PSPD is a rare autosomal inherited bleeding disorder. Unlike hemophilia which is an x linked recessive bleeding disorder. Platelet disorders fall into 2 categories Qualitative (abnormal function and/or structure of the platelet) vs. Quantitative (from having too few or too many).We fall under the qualitative category. Platelets are small parts of the blood cells that help wo
Post a Comment
Read more

Give Kids the World Village. . .Go to your happy place-Scarlet's Make-A-Wish PART 5

When people say . . . "To go to your happy place". . .  I now have somewhere to go.   My name is Kari Peepe and I am the lucky parent of Miss Scarlett Peepe. . . We just got back from Give Kids the World in Florida and we are literally beaming and my jaw hurts from smiling so much from watching my daughter in a state of such pure joy for one whole week.   I want to cherish the feeling we had when we returned from Scarlett's Make-A-Wish trip . . .forever!  Scarlett was diagnosed when she was 3 years old with Platelet Storage Pool Disorder- a rare bleeding disorder which has left her with a life time of blood work, medications, restrictions and fears of life threatening situations.   As soon as Scarlett found out about Make-A-Wish, she was ecstatic but nothing could’ve prepared her or us for the experience that was about to take place and the joy it would leave in our hearts and our minds forever.   Prior to meeting Scarlett's Make-A-Wish team I had never even he
Post a Comment
Read more