With our son’s permission, for Giving Tuesday, we would like to share a little story of our current life with chronic illness. Please be patient as you read…As his mother, I have really contemplated on if I should open up my heart this much because I have been so hurt in the past. As we reflect on what is happening in our lives right now, we are reminded that much of our mission is because of Parker and children like him.
I haven’t really shared it with many but Parker has been in bed about three weeks. He is really sick. Three docs think it is a virus that has kicked his body into defense mode. At first this wasn’t apparent; he just seemed like he was in a really bad flare with extra issues, but now he definitely has an upper respiratory viral symptoms. A COVID test has been done, but is not COVID. Whatever it is, it is really mean! We are being reminded that any illness can be scary for kiddos with chronic illnesses.
His blood pressure keeps dropping. Several times I have almost taken him to the ER but they really want us to avoid the ER if at all possible. Prayer and hope are my biggest form of combat right now. I pray I am guided to keep him safe. I am sure he has lost more weight as he is not eating much. Yesterday, he was supposed to get his monthly biologic infusion. It would not be safe right now to get it with his immune system so weak. So it is on hold, and he is already flaring with swollen joints, pain, rashes, and overall crushing fatigue…on top of everything. It is so hard to just be a witness to his pain and weakness. His endocrinologist has increased his stress dose of hydrocortisone. His cardiologist prescribed an emergency blood pressure med, as his blood pressure keeps going very low. His pain management doctor has rewritten a script for a pain med for intermittent use (one he worked hard to get off of).
With all this said, the timing of all of this is absolutely horrible. Parker has also been struggling hard with major ear and vestibular issues, while also working hard on PT to heal from his recent foot/ankle surgery. In addition, he has been having issues due to his scoliosis, his SI joints, and his jaw. In fact, he is seeing a new doc who has ordered a gait analysis where he will go into a special room outfitted with video cameras. He will have sensors placed on his body to watch his body mechanics and movement. Parker has been in intensive PT and vestibular therapy with a therapy specialist who also works on gait. But that has been on hold for a week and a half, due to his health. In addition, tomorrow he has a jaw/spine/SI joint MRI. Oh, and he just passed a kidney stone about two and a half weeks ago. Yup, we thought that was the initial issue…but things just continued to spiral.
If you are thinking ‘this is a lot’, you are right! If you are also thinking, ‘she is crazy’, this is how I feel others see me and why I have stopped sharing so much of my heart. This is the life of many children with chronic illness and their families, but the world doesn’t see it. Many families just deal with it quietly within the confines of their own home and life goes on all around them.
This is why we fight so very hard and why we started the Purple Playas Foundation (https://purpleplayasfoundation.org/). If you have made it to the end of this email, we know you really care about our family and about all these children. We would like to share what the “Giving Tuesday Team” has stated: “At its core, GivingTuesday was created to facilitate our deep-seated desire to help each other. Our belief has always been that through local action, we can inspire global change. This couldn’t be more true in this moment. We’re moved and inspired by the sheer audacity of hope and optimism to keep on giving, connecting, and creating togetherness. It’s time to unleash generosity, to help our neighbors, inspire more giving, and create the world we all want to live in – together.”
If you are giving for “Giving Tuesday”, please consider Purple Playas. We are forever grateful for your support!
1. Donate directly to the Purple Playas Foundation through any of the following:
-Our PPF website (Just click on red donate button at top of page)
-By mailing a check to: PPF, 16608 Lake Heather Drive, Tampa, FL, 33618
2. Share this event with family and friends: https://purpleplayasfoundation.org/events-virtual-2/
3. Share your photos/stories on social media using #PurplePlayasPower to spread the love.
With love, gratitude, and hope,
The Lentini Family