A lot has changed since my daughter was diagnosed with a platelet storage pool deficiency in 2011. Initially, there was little information and case studies to look to for reassurance. Not having a treatment plan led to many fears, doubts, and unknowns and wondering if I could make it through another injury or trip to the emergency room. I cursed the world for giving her a bleeding disorder.
But thankfully over the last few years, diagnostic testing has become more accessible for patients and more information is available. Along with that, Scarlett has gotten older, the injuries are less frequent, and we are finally getting to experience what it’s like to drop your child off without waiting by the phone to find out something bad has happened. I’m able to see things a little clearer now and can say that platelet storage pool disorder doesn’t rule our lives. I’m actually thankful for all that I’ve learned, especially these 6 things that being a mother of a bleeder has taught me.
Trust My Gut, Mama Knows Best
A lot of trial and error and guesswork comes with being a parent to a child with a rare disorder. There is no treatment plan specified for her disorder, which makes each injury a case-by-case scenario. This leads to a lot of on the spot decision-making. When Scarlett gets injured we have to instantly decide if it’s bad enough for medication and if it’s worth decreasing the odds of the medicine working in the future for a worse injury. The more she uses the particular medicine prescribed to her, the less her body could react to it down the line.
This can be a tricky road to navigate because I would feel horrible if I didn’t give her medicine to her and then she had a substantial bleed. And I don’t have the option to just give it to her and say ‘better safe, than sorry.” So I’ve learned to trust my gut, and now that Scarlett has gotten older, her gut too. We both gauge the situation and make the decision. I can look back at the last six years and say there has only been one or two times that I think we waited too long and should have given her the medicine earlier. That’s not bad for all the injuries she’s endured.
By Being an Advocate and Fighting for What I Believe, Can Make a Difference
We initally had a hard time getting the school to understand the severity of her disorder without scaring them into pulling her from the playground completely. After several head injuries within the first few months, we spent all of kindergarten year giving and taking away restrictions and during her 1st grade year she was only allowed on the playground when I was there to supervise.
It was obvious to me that the safest option would be to have an aide with her on the playground to assure she would get immediate medical care if an injury occurs, big or small. After several more injuries and lots of discussions, the school finally decided to give in to my request. In the two years since, they have provided someone to keep an extra eye on Scarlett. She’s been allowed to do almost all activities and P.E. with her peers with little injury. I’m so thankful that I fought for this and she’s allowed the freedom to do whatever her friends are doing.
Unfortunately took me a while to learn this one, but I definitely can say I’m getting better at remaining calm in emergency situations. When Scarlett was first diagnosed I gasped and panicked with every bump and bruise. Over time I’ve learned her cries and reactions, and what lumps and bruises are categorized as alarming. This also has proven to be helpful time and time again when others have gotten hurt
A perfect example of this was when I remained so calm when my non-bleeder bumped his head last spring. Walker and Scarlett were playing in his room when I heard a loud thump followed by him running out of his room holding his head, screaming a cry I had never heard before. When he pulled his hand away from his head, to show me blood oozing from an half inch gash in his head, I must admit I instantly felt a bit panicked. I rushed over to the freezer, pulled out an ice pack, wrapped it in a towel and picked him up repeating over and over again, he was going to be okay, but then a sense of calm rushed over me.
I quickly took him to my room, got dressed as I reassured him everything was going to be fine and that we would be going to the ER. My husband was out of town that weekend, so took Scarlett with me as well. I somewhat wrapped his head, got them both dressed and grabbed our emergency bag filled with all the essentials I would need in a scenario just like this: a first-aid kit, snacks, water, coloring, books, stickers, cards, etc. We were out the door and in the car in a matter of minutes and everyone remained eerily calm during the whole experience. Walker only cried initially and I’m still so proud of all three of us for remaining so calm. (Even through the staple gun Yuck!)
I’m a Pretty Darn Good Nurse When There’s an Emergency Situation
I’ve learned a lot with all the blood and injuries I’ve witnessed. I’m a preschool teacher and have worked with children for over 20 years. I’ve seen many slips, falls, bumps and bruises but nothing could’ve prepared me for what I would learn about basic first-aid until I had Scarlett, and I never would have guessed how handy it would come in at work.
Recently a child fell, hitting her face on a tricycle. I was standing right there and in the split second it took for me to get to her she had blood covering her face. As the other teachers looked at her in horror, I picked her up and had her washed up and cleaned up in a matter of minutes. With my first-aid skills I was able to quickly assess the injury to find out she had only bumped one of her teeth a little loose and she had a bloody nose. I had the nose stopped and had her sucking on ice to slow down the bleeding by the time her parents got there a couple minutes later.
I didn’t witness first hand how a second child got hurt, but due to my knowledge and calmness I have become the teacher that gets called upon to handle an emergency. When I got to the toddler she had an obvious gash that would need stitches. I calmly swooped her up and got an ice pack on it as quickly as I could and started looking for the butterfly Band-Aids. By the time her mom got there, the two-year-old was calmly sitting on my lap all bandaged up and ready to be seen by a doctor. I think it’s safe to say I’ve become a better caretaker since my child was diagnosed with a bleeding disorder and that is has prepared me to take on anything.
I Got This! (Well, With the Help of Friends, Family and the Amazing Bleeding Disorder Community)
My husband works nights, so on most weekends he just wants to catch up on his sleep. Because of my husband’s work schedule, I’m the key point of contact for Scarlett’s disorder. I deal with every emergency room visit, doctor appointment, birthday party, and play date.
Due to my husband’s work schedule he hasn’t had the opportunity to embrace the bleeding disorder community. This has proven to be difficult, as I’ve set off on adventures just the three of us, especially when my youngest was a toddler and my bleeder was still not making safe choices. Family camp, fundraisers, and holiday parties used to scare me to death, but I’ve learned I can do it and that it’s okay to ask for help. Family and friends are always there to lend a helping hand and I lean on my bleeding disorder community a lot when we go to local events. I’m so grateful for all my friends and family reminding me to ask for help and to those that have pushed me to keep going to the events.
I Can Handle Almost Anything
Almost two years ago my mother was diagnosed with Parkinson’s Disease. This came as a total blow to my family. Everyone seemed to handle the news differently; some cried, some remained in denial, and some had no reaction at all. I remained very calm, optimistic, and very matter-of-fact with the news of this life changing disease.
I instantly hit the pavement researching, reading, and educating myself on what was to come. I remain one of the most involved and educated on her disease and much like I do for my daughter, I am constantly pushing for her to find the right treatment plan. I truly believe if I had gotten news like this several years back it would’ve killed me. But in some odd way Scarlett’s disorder has taught me to take these things as they come. I can’t prevent these traumatic experiences from happening, but I can control how I deal with them.
I could have never dreamt where Scarlett’s diagnosis would take us. It has taken us on an incredible journey s with a lot of ups and downs, but I wouldn’t change it for the world. It’s taught me to trust myself, fight for my beliefs, and be calm. It’s taught me how to be a better caretaker. And most importantly, that I’ve got this, and that I can persevere through anything.
Kari lives with her husband, Ryan, and 8-year-old daughter, Scarlett, and 4-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.