GINTA – When hope, help and gratefulness count as stepping stones
ON July 26, JESSIE SIMPSON will turn 24. That’s also the day when his mom hopes to have him at home for a few days, so he can enjoy the place he has not been able to see but in memory, fragmented as it is, due to the horrendous attack Jessie suffered in 2016 on the night of his graduation party.
Presently he is in the hospital, fighting his way out of a kidney infection that has him in pain and nauseous. Just a few weeks ago, he had yet another seizure which his mom witnessed.
And yet, he will still tell you that he is OK if you ask him how he is. Yes, even now. I chatted with him last week before his MRI. He was in pain but most of all wanted to say that talking feels soothing and it helps him feel better.
Jessie almost died a few times, has been on a hospital bed since June 2016, poked by countless needles for countless interventions, has had multiple catheters, and been rushed to the hospital for kidney surgeries. When all becomes too much, he cries. With words only because the attack left him unable to cry with tears. Mostly, however, he smiles.
His mom, Sue, has been by his side from that first night when she got the call about a parent’s worst nightmare.
She has been fighting for her baby in every way she could since. She wants him to have the best quality of life possible in his situation.
For the longest time she had nurtured the hope that he would get better, and she could have him move back home forever. ‘Everyone is happier at home,’ she said, and Jessie loved his home. She misses his running out the door – never without hugging her, and she misses the ‘Jessie noises’ around the house, including the occasional (and yes, forbidden) rumble of his skateboard down the stairs.
The last few months have been rough and have unfortunately eroded that hope. She’ll be taking him home for the weekend once his situation is stable, but Jessie could never live at home due to the fragile state he is in. The best of care for someone like him requires the kind of funds Sue does not have access to.
The most painful thought that comes like a dark cloud is the reality of Jessie’s life. ‘He will never be able to do even the smallest things his friends are doing,’ Sue says. His friends keep in touch and that means that she is witness to their lives unfolding. She’s happy for them, but there’s much sadness mixed in. Life will never be the same for Jessie. Even remotely so.
She’s said it before, and it’s become her mantra: One day at a time. When he is having a good day, she celebrates with him, pushing every bit of sadness away because she knows how precious joy is. For all the days when hope crumbles because he is in pain when she has to leave him for the night, she seeks all the positive thoughts she could muster, all the hope that one day there will be justice for Jessie.
How do you accept all that and keep on going, I often wondered? Sue answered that on more than one occasion for me: by focusing on getting what he needs; by being by his side until late even if that means she cannot drive home due to tiredness and has to pay for a hotel for the night so she can rest and the start again the next day; by remodelling their rental home so it is suitable for his future weekend visits, and by organizing a silent auction in the near future (most likely in mid June – updates to follow).
Sue’s fierce love for her son is keeping her fired up, but so is the support she has received from so many people in the community as kind thoughts, prayers, encouragements, contributions to Jessie’s silent auction, bottle drive, or monetary contributions to the ongoing GoFundMe campaign. She never misses the chance to express her gratefulness.
A parent’s love can move mountains, but support from those who care adds steadiness and hope to her journey when the reality of Jessie’s situation overwhelms her.
It’s one day at a time indeed, and on each of those days she wants but one thing: to have Jessie know that he is loved beyond words and that his mom will never give up. Ever.
If you wish to contribute to Jessie’s GoFundMe campaign, please follow this link. You can also sign up for updates about the silent auction coming up in June.
Daniela Ginta is a mother, scientist, writer and blogger. She can be reached at email@example.com, or through her blog at http://www.thinkofclouds.com.
Beautifully written everyday this is.our reality. Thank you so much everyone for your support.
Wow that was beautifully written , I had no idea he couldn’t cry , made my heart break I love you sis and my brave nephew Jessie I love you both❤️🌹🌹🌹🌹🌹🌹