This is our Blakey. Blake was born at 24 weeks weighing 1lb 10oz. From the moment he entered this world, Blake needed doctors and nurses to survive. As a premature baby, his tiny body just wasn’t strong enough to support himself. He required a ventilator to breath, daily heel pricks for blood tests, experienced constant collapsed lungs, was covered in lights to keep his bilirubin level down, had an illiostomy surgery at 1lb 4oz to repair a torn illium, had a colostomy bag for several months, experienced a severe grade-4 brain bleed, and had an illiostomy reversal surgery….all prior to finally leaving the hospital 4 months later at 4lbs 6oz. He did not and would not have it easy medically!
Blake will need constant care and medications for the rest of his life. Since birth, he’s had many surgeries for many different reasons. He’s had countless pediatric, neurology, opthamology, dental, orthopedic, and hemotology visits, as well as years and years of PT, OT, and speech therapy sessions, blood draws, IEP meetings, AFO fittings, etc. Needless to say, Blake is not fond of doctors!
Despite the hardships listed above, he’s a bright light and a happy soul. He is an individual with intellectual and developmental disabilities (IDD) who just wants to be seen, appreciated, and loved. He enjoys car rides, music, flirting with the ladies (if you’ve met him you know), funny noises, being a jokester, hanging out with his family, and playing with his Simon toy, his IPAD, and his keyboard. He loves attention and his quiet time.
What he doesn’t love is feeling scared. He doesn’t want to be messed with or hurt. That’s what doctors visits and therapy equate to with Blake….especially if you are dealing with his feet, his mouth, or any type of loud/weird noises! Thank heavens we found mostly amazing doctors and nurses who were patient and kind when dealing with Blake as he grew up. Pediatric care seems to be much easier to find for IDD children. With the exception of dentistry, we had a great crew!
Fast forward to adulthood, it was hard to find the right non-pediatric doctors for Blake. Most of his doctors and specialists let him continue seeing them past the age of 18 simply because we couldn’t find the right replacements. Then we heard about Lee Specialty Clinic and immediately joined the waitlist. Because we had a very urgent need for dental care, specifically a dentist who would perform sedated teeth cleanings, the staff at Lee’s got us in. We had to wait another few years to get in for primary care. A few of Blake’s pediatric doctors let him stay until he was 21 (thank heavens) allowing us the extra time needed to get into Lee’s.
The staff at Lee Specialty Clinic are angels. They meet Blake where he is, they are patient, understanding, caring, and respectful of our wishes as his parents/guardians/advocates. We can walk into that building and let Blake be who he is, and they love him for it. Does Blake like doctors now? No. Does Blake feel more and more comfortable everytime we visit? I’d say, yes! Do we as parents feel more comfortable knowing we have these amazing humans ready and willing to help Blake no matter the need? Absolutely!
To hear that the funding for this incredible facilty had been cut was crushing. My heart hurt! Defunding a facility that offers unmatched love, respect, and life-changing medical care for 1,000+ IDD adults in Kentucky is unfathomable and cruel. Do they know the waitlist for services is still 2+ years? That means we actually need more of these facilities, not less. Why is this so hard to understand? Why is this IDD community so easy to overlook? Is it because they can’t fight for themselves? Why do the voices of the families, friends, doctors, nurses, therapists, and advocates who fight for them seem to go unheard?
I hope and pray that the lawmakers who have the power to evoke support and change for the IDD community are listening. I hope they have compassion and empathy for the individuals who desperately need the services Lee Specialty Clinic offers. I hope they consider how they’d feel, or even vote, if this was their child, grandchild, or loved one being denied needed services. I hope they make a change!
To the doctors, nurses, therapists, and staff members at Lee’s, please know the giant impact you have on our loved ones. You are all beautiful humans who make difficult lives more bearable. You bring hope, much needed respect, and a ton of love to the lives of our IDD community. You bring peace, hope and support to their caregivers. I said it before and I’ll say it again, you are angels!
If you can help, please do. Fight for what is right. Chose love, understanding and compassion. Save Lee Specialty Clinic!
Source: Facebook/Stephanie Sue; https://www.facebook.com/share/p/1HFZuhCh9u/