Hey y’all, sorry it’s been so long since I’ve had a chance to update! We’ve had birthdays, Easter, more birthdays, Mother’s Day, and more birthdays coming up along with Father’s Day. Goodness!
We are all still doing ok. LB has an appointment coming up with pulmonology, but she seems to be doing well overall with her asthma. LN is ready for the school year to end, but with that change comes increased behavior changes and challenges, so we’re working with him on adapting. LK’s arthritis has flared a few times, thankfully she has her heating teddy bear that helps ease the pain and let’s her sleep. LE still has ups and downs, and will be getting a sleep study soon to see if we can help in that department. We’re still at a point of treating symptoms, rather than being able to “fix” anything before it happens.
I was introduced to an organization recently called Purple Playas Foundation. They provide support for chronically ill kidlets, like ours. From their About page:
Parker Lentini is the reason that the Purple Playas Foundation was born. He believes in the hope and love that others share. He is always saying, “You’re never fully dressed without a smile.” Parker has a life threatening chronic condition that doesn’t stop him even through all his treatment, pain, and hospital visits.
He’s endured many surgeries and multiple medications, including shots and infusions. Through all this, he is always thinking of others. Parker loves community service and advocates for children with chronic illness. Parker continues to raise awareness and funds because he heard about families who had their power/cable turned off or who were struggling to buy food because the cost of travel to treatment was causing major financial difficulties. He just could not bear to think that children may not have electricity or enough food because they were struggling to get to the doctor.
The mission of the Purple Playas is to provide support and resources in the area of pediatric complex chronic care needs and gifting smiles to children and their families.
Provide social-emotional resources and information on coping with medical trauma to support families and children impacted by chronic illness.
Purple Playas SMILE Power – Provide funding and resources to providers/families of children with chronic illness to bring smiles to children’s faces. For example: funding to camps that support children with chronic/complex illness, food/gas cards to get to treatment, gaming systems for hospitals, durable/medical equipment not funded by another means, family fun days to connect families, etc.
Support fellowships/scholarships in high need pediatric care with a critical shortage, beginning with pediatric rheumatology.
Now when I contacted them, I was curious. What kind of support do they provide? Is it really free? The answer is, yes it is free, and they provide Coping Kits for the kidlets. They sent me four kits, and the kidlets were thrilled to receive them! The first thing they all grabbed out of them was the adorable plushie:
Each kit came with the plushie, a heating/ice pad (in the shape of a heart!), and a few other items. Some of these were stickers and books that encourage the kids and show different methods of coping with the challenges faced with long-term illnesses. There’s even a mood chart (which three of my kids immediately pinned to the wall!) to allow the kids to move the clothespin to their current mood. This is perfect for when they don’t really want to talk about how they are feeling at the moment, but can still share with us. It also helps them define what they are feeling with cute, easy to interpret faces. It’s fantastic!
Resources like these are incredibly powerful for children with Special Medical Needs. As a parent, it makes me feel amazing knowing that my kids don’t have to feel alone or powerless. Kits like these show that not only are there others out there facing life-long, chronic health challenges, but that there are others who CARE outside of our family and friends. As my kids grow older, they will always know that they are loved, cared about, and not alone in this.
Are you interested in learning more about the Coping Kits? Check them out here and let me know if you do!
None of you are alone. If you ever need to reach out, feel free to. Families of children with chronic illness are stronger together. It’s a tough road to travel, but you can do it. And so can they.