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My daughter is about to fall off the ‘disability cliff,’ and … – Philly.com
www.philly.com/philly/…/medicaid-idd-intellectual-development-disabilities-chops-sy…
4 hours ago – We are as prepared as any family can be for Leta’s upcoming fall from the so- called “disability cliff.” – Lainey Moseley, Philadelphia Inquirer and …

“Every human being needs to know what they are fighting for,” says Ove in Fredrik Backman’s, A Man Called Ove. The quote stuck with me and forced me to ask myself if I know what I was fighting for in life. And of course, I do. I have spent the last 19 years fighting for Leta, but strangely I spent most of my marriage also fighting about her; where she should go to school, if she should take certain medications,was she sick enough to need to go to the hospital, should she travel to Mexico, or was it fair to leave her behind, were we giving her enough therapy, the right kind of therapy, who took her to the ER the last three times, who was more sleep deprived….the fighting was endless. So many battles over 20 years. Too many to remember each one individually.

The lifesaving fights for Leta seem more memorable than the late night bickering Luckily, Leta got better after each medical scare, but we did not recover as easily.
With so much history swirling in my brain, I focused my thoughts on Leta’s last serious hospitalization to better understand why we had been successful fighting for her life, but losing the fight with each other.

It was just last August that I received the call from Camphill that Leta was not doing well again. Her color was blue and she was listless. By the time I got to school, the ambulance had already arrived . I made the choice to ask the ambulance to take us to CHOP instead of a closer hospital. Knowing it could be a fatal choice if any one thing went wrong. The ambulance ride downtown on the blue route coincided with the last night of the Democratic National Convention. We crawled along at a snails pace in bumper to bumper traffic. The reality of Leta not making it to the hospital and dying in my arms loomed large in my dark thoughts.
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Leta’s barely discernible pulse, her ashen lips, her sunken eyes and stillness suggested I was losing the fight this time. When we finally arrived at the ER, the doctors sprung into action. While the EMS workers conveyed her vitals, I weighed in that the oxygen was not bringing up her saturation levels and that I was worried she might need to be intubated . So, they rushed her into a surgery room where dozens of attendants came out of nowhere. I sunk to the background . My usefulness had expired. My hands were now shaking. Post-traumatic stress, my bodies learned response, had kicked in. I began to feel light headed and nauseous and had to sit down.

At that moment he walked through the doors , relieving me by climbing on to the bed and holding Leta’s almost lifeless body btw his legs. But more importantly he was now there to hold her oxygen over her face while the doctors assessed the cost/benefit options of getting leta’s oxygen levels higher than 50%. with or without medical intervention. Intubation seemed inevitable.

Although always risky for Leta, intubation is sometimes her only lifesaving choice. If her lungs are not strong enough to breathe, the machines have to do the work for her. Her dad argued against intubation and countered with an unorthodox Plan B…. He insisted that he was strong enough to hold her down and keep the oxygen on her face, tight over her nose and mouth for the next 12 hours if necessary. That meant an all nighter of endless vigilance that might also include being bitten, pinched and hit in the face as Leta’’s saturation and fight improved ,

In my mind. standing on one foot in a room full of mosquitoes for the same length of time seemed like an easier fate to endure. Leta ,always a tough patient, is relentless in her fight to avoid the nasal canula in her nose.

I knew I did NOT have the strength to do what he was offering. Without him, our only option was intubation. And as much as we see the world differently,neither of us could run this marathon alone. I had done the first leg, he was picking it up now.

At that moment, I realized that together all these years we had been able to push ourselves physically and emotionally further than either of us could have ever done alone. And luckily for Leta, our shared endurance in this particular moment is what she needed.

I went home. Hands still shaking. Still praying for my little girl but also thankful that she had her dad by her side all night. I knew he would move heaven and earth to protect her from any unnecessary intubation.

Sadly, all these years, neither of us has found the grace to acknowledge that whether we like one another or not, we are the A team when fighting together for Leta. Such is the dance that we danced while married and continue to dance while divorced for better or for worse.

Leta absolutely needs both of us. But ironically, we need her just as much. She gives our lives purpose in a way that other things don’t. Leta’s survival is a profound miracle that we lie witness to and sometimes participate in again and again. It is our privilege to get to fight this fight for her. Every human being needs to know what they are fighting for. Sometimes, they just need to stop fighting to actually see it more clearly.