Remembering Linda

Every time I think I have it tough and start feeling sorry for myself, I think about my neighbor, Linda. Linda’s son Brian didn’t have Type 1 diabetes – he had hemophilia. If you don’t know what that is, it’s a genetic disorder in which your body doesn’t produce clotting factors, so if you cut your self or bruise yourself, you keep bleeding. And bleeding, and bleeding. A scraped knee is a life-threatening emergency, for someone with this disease. A simple sneeze can mean a bloody nose that drains pints of your blood from your veins, unless you can get some clotting factor (which, by the way, is among the most expensive drugs on the market—insulin is penny candy, by comparison).

Linda had hemophilia in her family history so she knew that having children at all was a roll of the genetic dice. She had a one-in-four chance of her child having hemophilia — seems like pretty good odds, right? A 75% chance that all would be fine? I’d take those odds, too. Her firstborn child, Heather, showed no sign of the disease — phew. Her second child, Brian, seemed okay at first, but at 18 months started showing signs that Linda, having grown up with a brother with hemophilia, found all too familiar. Brian was subsequently diagnosed with the disease, and from there began the rollercoaster ride. Hospital visits in the middle of the night, because Brian caught a cold and his lungs and nose were hemorrhaging each time he coughed or sneezed. The constant worry about a little boy who wanted to play the way little boys do — and the anger when his school decided that Brian, then 7, should be sent to stand alone in a chalk square at the edge of the playground because (school officials decreed) allowing him to play with the other kids was too dangerous. Later, the constant anxiety was compounded when Brian, like other children with hemophilia in the early 1980s, contracted HIV from tainted plasma, at the age of 10. Hard enough raising a child with hemophilia — now you have to add the specter of AIDS into the mix?

Brian died two summers ago at the age of 34 — almost twice the lifespan he’d been offered by a boneheaded healthcare provider who told him at 14 that he could expect to see 18, if he was lucky. I stopped in to give my support to Linda and Dan, Brian’s parents, at the hospital while they were waiting for the end. Linda said to me then that as hard as it had been all those years being a mother to a child who was living on the edge of death every day, Brian was worth it.

Linda herself had Type 2 diabetes, which had advanced to the point where she was using Lantus and a variety of medications to improve her insulin sensitivity. In the years after Brian’s death, Linda had started really focusing on improving her health—probably to keep her mind off the fact that the person who’d been her main focus all these years was gone. She started an exercise program and joined a group to help her make dietary changes. She lost weight and found herself feeling a lot more energetic than she had. She told me that since Brian’s passing, she slept better. For a while, her health seemed to be improving. But just a few weeks ago, she’d commented to my husband that her pancreas was starting to quit on her, and she was now using Novolog plus Lantus. Disheartening, to say the least.

Thursday night, Linda died suddenly of a heart attack. Just like that. Her ex-son-in-law happened to be there, having stopped in for a short break from a long journey he was taking, and he called 911 and gave her CPR, but he couldn’t save her, nor could the paramedics who were there within minutes. It was, quite simply, her time.

Her husband Dan asked me to write a eulogy for her, just as I did for Brian two years ago, so I’m waiting on Heather to send me some stories that I can craft into a remembrance. But as far as I’m concerned, I will remember Linda standing next to her dying son’s bedside and saying — he’s worth it. The anxiety that comes with caring for a child with diabetes is a strain, it’s a slog, and sometimes the burden just feels overwhelming. At those times, I can think of Linda and what she lived through with her Brian, and realize, you know, this really ain’t so bad. It can be awfully hard to look on the bright side of this disease — and if the best you can do is remind yourself that it could be worse — and that, even if it were worse, he’d still be worth it all — well, sometimes that’s good enough.

I’m starting to depress myself, so I’d probably better stop. Farewell, Linda. Give Brian a hug for me when you see him.

I am so sorry. Thank you for sharing your heartfelt pain with us.

Your words are so touching. I admire the fact that you could see beyond your own pain to support another person in pain – the true sharing of spirit that makes us human.

Thanks for blessing us with your memories of Linda and her family. She sounds like an amazing and powerful woman. Keeping her son safe and caring for him through his many set-backs over all those years shows what a strong mama lioness she was. May she rest in peace.

What a Sad but Loving Life story. That was such a Success for Brian and Linda that he was able to live to age 34.
Thank you for sharing.

I am so very sorry. Our loved ones are always “worth it”. Linda and Brian will live on through your love for them and your beautiful words. I believe they are at peace, together once again. xo

Beautiful tribute to Linda & her Brian & to your love of them. My condolences.

I am really sorry about the loss of your friend and her son.

Well written and a beautiful sentiment. I feel for Dan and Heather - losing their son/brother/wife/mom so soon and so suddenly. I hope you share the eulogy with us when you’ve finished with it.

Sorry for your loss and the loss of this family. I WISH my dtr did not have T1 and just last night I said to my husband “I’m so sick of this.”. He said “what” and I said “diabetes”. I know it could be worse and it’s been a rough week but you remind me today it could be much, much worse, I am lucky to face struggling with my dtr’s disease, and I can hope there will be a cure one day. Looking on the bright side…and she is worth it :slight_smile:

Thanks for all your good wishes. Funeral service was today. I was up half the night writing a eulogy for her that was very well received – I will post it in a minute. You should all know someone like her!