I love Jonah and our life together. In this post today I hope to raise awareness for the people with developmental disabilities and those that love and care for them.
I'm not complaining about my lot in life.
In situations like ours one parent either quits their job to stay at home with their child or they hire an aid to cover the hours that they're not home. Many families need an extra hand throughout the day and at night. The out of pocket costs are not realistic for most families. Imagine paying for your child's daycare for the rest of their life. Staying home ends up being the better option. Which means the family loses a second income. Which in turns prohibits the family from saving funds for their disabled child's future medical needs or their healthy child's college education.
"The shape they're in, all the expenses, maybe those kinds of people should just die." -Donald Trump
Sanfilippo syndrome has made Jonah who he is. Jonah brings Jeremy and I tremendous joy and happiness. Our love for him is profound and we can't imagine him any other way. To say I wish Jonah didn't have Sanfilippo syndrome is to say I wish Jonah wasn't Jonah. I don't want Jonah to die and for that I wish he didn't have Sanfilippo. I don't want his body and brain to be ravaged by seizures. For the dementia to rob him of the ability to walk, talk and eat on his own. I don't want the sleepless nights to ever start. I don't want him to have to fight one bought of pneumonia after the next until his lungs give out and his brain shuts down. No matter what happens... I know that Jonah will always know who Jeremy and I are and he will know that we love him.
I just want Jonah to live his best life possible. He deserves that, he deserves the same access to an education, housing, healthcare and services that a healthy child has. To be accepted in his community and treated like a human being by society.
Jonah is aware that he's not like the typical kids at the local playground, he's gotten past that and steers clear of the kids that point out his disabilities. He's never indicated that he's jealous or upset that he can't do the same things they can do. He loves meeting new people, traveling, hosting parties, playing soccer and hanging out with me and his dad. His private school is the best, Jeremy and I feel like we won the lottery with his school. Jonah is happy and we're content being happy that he's happy.
He doesn't recognize you. Maybe you should just let him die and move down to Florida"- Donald Trump
If I had known during my first trimester of my pregnancy that Jonah had a terminal illness, would I have terminated the pregnancy? I do not know. But if I was pregnant with a second child after the first child was diagnosed and found out that my fetus was also affected, I would most likely terminate. Because our society works against people with disabilities. The hardships of caring for two terminally ill children would have been financially disastrous. We would have struggled our entire lives trying to make ends meet and provide our children with the necessities of life.
Today our rights to an abortion are being taken away. On one hand Trump says that kids like Jonah should just die and on the other he would allow states to deny us the right to terminate a fetus that carries a disease that causes profound cognitive disabilities and need for lifelong medical attention.
Trump appointed three of the nine justices on the Supreme Court, giving the court the conservative majority it needed to overturn Roe V Wade. He says "I was proudly the person responsible for the ending of something that all legal scholars, both sides, wanted and in fact demanded be ended. Roe V Wade, they wanted it ended," -Donald Trump video posted on Truth Social April 8th
Jonah is pushing 18 and we have started the ball rolling for when that days comes. Once he turns 18 we must be legally granted guardianship in order to make decisions for him and to take him to his doctor appointments. We recently applied for and were granted services through OPWDD Office of People with Developmental Disabilities'. However, Jonah still needs to be approved for Medicaid before we can access the services, we're working on this process now. OPWDD will help us hire an aid for him and find an adult daycare program for him. During Trump's administration Trump did everything he could to try to abolish the Affordable Care Act which protects Medicaid programs like NYs OPWDD. When the day comes that Jonah can't walk we will need help with medical equipment. For instance we will need special equipment to get him in and out of a tub, I'm thinking we'll need to move to a place with a walk in shower and perhaps a bidet, to clean his bottom. I think I have mentioned Sanfilippo diarrhea in the past. Wheelchair, safe-bed, seizure monitoring equipment etc. We're going to need all the help we can get and if Trump had his way he'd let Jonah die.
You might think this doesn't affect you, so why should you care. Don't jinx yourself, mutated genes, traumatic labor, and birth defects do not discriminate. You could have passed your disease causing mutation to your children, you just don't know yet. Your new baby grandson could have a stroke during delivery or be deprived of oxygen and be born with brain damage.
Speaking now to a different kind of childhood death that Trump glazes over. Shortly after taking office, Trump signed into law a bill that reversed an Obama-era regulation that made it harder for people with mental illness to purchase guns. Trump is incredibly lucky that the kid missed. I wonder how far Thomas Crooks imagined he would get? Shimming up a a building in broad daylight with a rifle hanging over his shoulder and cops all around. Mind blowing, pun intended. Our society grossly ignores mental health distress. It saddens me to know that Thomas was relentlessly bullied in school. Perhaps the shooting would never have happened if Thomas had been protected and helped by the adults entrusted to care for him.... Or if he didn't have easy access to a gun... Gun control Donald Trump! The irony is dumbfounding. Did you know that the number one cause of death for children between 1-19 is from gun related incidences?
I haven't stopped work to take the time and write about the accomplishments and progress that Phoenix Nest has made towards a treatment this past year. I feel bad about that and I hope to get a work post out soon. Right now I feel compelled to plead with those planning to vote for Trump to think about Jonah and the tens of thousands of families in our position.
Trump could destroy everything that myself and my rare disease community have worked so hard for. He can limit NIH funding, he can slow FDA drug approvals, he could take away Medicaid programs, limit funds to special education and influence drug reimbursement. He does not support my son, my small business or my community of families of developmentally disabled children. Based on his first term we have reason to believe that all our programs are in jeopardy. FYI, these are just concerns for todays post.
The moment that bullet grazed Trump's ear I thought we were done for. The guy would become untouchable and for a few weeks it seemed that way. I started thinking about how I would tolerate the next four years. Our natural history study will take 4 years to complete, I'll just pour myself into work and not look up. Then Biden rose to the occasion and dropped out of the run for office. To my delight Kamala Harris was selected as the new democratic presidential candidate. I feel that a huge weight has been lifted from my shoulders.
I'd like to acknowledge a fellow Sanfilippo parent that is fighting to raise awareness and protect the rights for those with disabilities through her Instagram account, you can find Noel and Logan Pacl at love_logan007
There are a handful of other courageous Sanfilippo parents raising awareness through social media. I praise them for their dedication and tough skin. My JJB Instagram account is now perkyplantslivehere. I post about my beloved office plants, you can marginalize my plants I can deal with that. I just can't easily or gracefully respond to or rebound from the hurtful posts that strangers made on my personal and JJB posts regarding rare disease.
I'm dedicating this post in loving memory to Jan, Jonah's adoring grandma. Jan's affection for Jonah was unwavering she absolutely adored him. Watching her engage with Jonah was heartwarming. Jan will be deeply missed by all those that loved her. We lost her too soon. I know that Jan would have appreciated this blog. RIP grandma Jan.
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| Jonah's 16th Birthday |
