Understanding, But Not Sharing, Despair

I want to get this blog post just right, and yet I’m afraid that I will fail miserably.

But I’m going to try.

I read today about the Short family, a family from Pennsylvania who died of an apparent murder-suicide.  They had a chronically ill kid, a child who had received a heart transplant.  They had been featured in their local newspaper when their daughter Willow received the heart. The story was hopeful, it was upbeat.  There was a future thanks to a generous donor.  People like to think of it as a happy ending, but in reality organ donation is only a beginning.

A year later, the same family was featured in a New York Times article, detailing how hard it is to get the anti-rejection drugs compounded and filled, where it shows a picture of the mom dosing up the medicines, which by the way are the exact same medicines my daughter takes.  We have shared the same terror of worrying that you are going to run out of the medication that is keeping your daughter alive because of some stupid rule made by either the pharmacy or your insurance company.

In fact, up to this point, I know exactly how they feel.  Scared, hopeful, struggling.  There’s not a lot of place in this world for a sick kid.  I’ve said that for so many years now I feel like a broken record.  Not a lot of place, so parents of these kids keep fighting.  Fighting for prescriptions, fighting for 504s or IEPs in school.  Fighting for doctors’ appointments, fighting to be heard by doctors and nurses, by other hospital staff, by pharmacies and insurance companies.  Giving the thumbnail version of your child’s illness to every new person on the phone, every health care worker you meet, every time.

It’s exhausting.

And yet, none of us know what we sign up for as parents, and we have to move forward.  We are not just caregivers, but nurses, social workers, dieticians, pharmacists, and medical managers.  No one is going to do it for us, and no user manuals are included.

There are other kids in the family, kids who might not get as much attention as they deserve because the parents have to deal with the sick kid, the emergency, the crisis.  They are unwitting victims of the tragedy.  That adds pressure, too, the fact that you know you’re not able to be the kind of parent you want to be to all of your kids because there simply aren’t enough hours in the day.

There are stresses with work, normal stresses, but nothing more stressful than the idea of losing your job, because you need those health insurance benefits more than anything else.  So you make fewer waves even if something might be wrong because you can’t afford to be unemployed.  There are sacrifices you make, as little as sleep or as large as a professional life, in service to the illness and the medical needs of the chronically ill child.

All of these problems contribute to difficulty in a marriage.  You promise to love, honor and cherish when things are at their brightest and the future has all sunshine and rainbows, but stress, bills, worry, and problems are unrelenting.  You are constantly afraid that the delicate balance you’ve constructed will get tipped again with an emergency. You are waiting for the other shoe to drop.

Damn, it’s really hard.

The mom in this tragedy blogged about her struggles with PTSD, from dealing with her daughter’s medical issues.  She talked about her survivor’s guilt, knowing that another child died while her child lived.  I can personally attest to that guilt, and have blogged about it before in my piece, Dear Mom of My Daughter’s Kidney Donor.  It is a unique and exquisite combination of gratitude and guilt that parents of kids who have received organs from deceased donors share.

Now there are five dead bodies, six if you include the dog, in a murder-suicide. A family that seemed very public about their struggles, struggles that I share as the parent of a chronically ill kid.  And I feel so many emotions connected to it.  Anger at the futility of it, and anger for the donor family too.  Sadness, a bottomless sadness for the family.  Horrible unrelenting understanding at the dark side of the situation.   Gratitude for the love and support from my family and friends, because through all of the many years now I have never, ever felt alone.

Because the truth is, that while there’s not a lot place in this world for sick kids, there’s not much place in this world for their parents either.  It’s only through the personal connections you have and make that carry you through the hard times.  It’s knowing you’re never alone, that there’s always someone there to listen, laugh with, or help you problem solve.  It’s combating the feeling of isolation with the knowledge that there’s always someone there for you, and you are there in return for them.

Hug the ones you love today and thank them.

My deepest sympathies and condolences to those who knew and loved the Short family.

The National Suicide Prevention 24 Hour Hotline: 1-800-273-8255

 

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My Most Helpless Moment

As a mom of a chronically ill kid, there are things that get thrown at me all the time with doctors, nurses, school nurses, pharmacies, insurance companies, etc.  My daughter takes a nice cocktail of daily medicines, along with blood sugar checks and other concerns due to her immuno-suppression.  Yesterday alone, I had two calls from the school nurse, two from the specialist’s office about prescriptions and appointments, another to confirm an ultrasound, and one visit to the primary care physician, for (of all things)  a sprained knee.  There are no breaks with this child. It’s a lot, and it can wear on you.  However, I have grown as a person and a parent since Wendy was originally diagnosed, and sometimes when I’m feeling a tad overwhelmed,  it’s helpful to visit my most helpless moment to see where I am today, how far I’ve come, how far we’ve all come.

It was one of the first weeks that we were in the PICU of Massachusetts General Hospital.  We had been transferred first from our local hospital to Dartmouth, and then transferred again to Mass General.  Wendy was three and a half, and normally active to the point of hyperactivity. She was always running, always joking, always testing the limits of EVERYTHING including my sanity.  Then her illness came and she was in terrible pain, she was dehydrated, her kidneys had shut down along with other organ failures. She was in really bad shape.

Doctors came in and out, whole teams of them, explaining to us what was going on, what was happening, what they were trying, how long we would be there.  It was terrifying and isolating and we had to learn a whole new vocabulary over night.  I would stand at rounds and take notes, of the doctors, their names, their specialties, what they were saying, what I didn’t understand, and then after they left, I would sit down and google the terms and try and piece together what the hell was going on.

It was like living in a nightmare.

Wendy was largely unconscious, and had tubes in and out of her with medicines and different solutions.  I had a flurry of emotions:  fear, isolation, uncertainty,  but the  number one thing I felt was helpless.

As a parent, I was used to calling the shots for everything (with my husband of course.) What Wendy ate, what she wore, making sure she brushed her teeth, making sure she had the proper  number of minutes for her time out.  Worrying whether she’d make her milestones, if she was eating enough vegetables, you know the drill.  Too many decisions that we as parents make ourselves crazy over, wishing there were a no-fail guide book to read and learn from.

Likewise, every parent has felt helpless at some point.  We all have to let our kids experience life on their own terms, and that means getting hurt.  How many of us felt helpless when their kid rode with out training wheels for the first time?  Sang solo in a musical production?  Had to get vaccinations?  Had a badly scraped knee?  We are helpless because we just have to let the  moment happen, but hopeful that it will go as well as it can go.  That’s parenthood:  responsibility, helplessness, hopefulness, angst and joy.

Early on in Wendy’s illness was when I was the most helpless because I went from being the Primary Parent In Charge, to just sitting there while other people tried to save her life.  I couldn’t do much more than answer questions, sign consent forms, try to make sense of it all, and hold her tiny hand.    At some point, one of the nurses took pity on us and decided that we should hold Wendy, that it would be good for all of us if we could do this one, simple, thing.  But it’s not simple with all the tubes and wires, all the timing, all the schedules.

It took the nurse the better part of an afternoon to plan when to unhook, when to drain, when to unplug certain wires and tubes.  Between rounds of dialysis, before labs.  Slowly things were capped off and Wendy was ready to be held.  They sat me in a chair and brought her the two feet she needed to travel from the hospital bed to my lap.

Here is where the most helpless part kicks in.  When they put Wendy in my arms, I was holding her with both of my arms supporting her from beneath.  And I couldn’t help it, I started crying, out of the pain that she was suffering and the joy of holding her again, and the uncertainty of our future.  The tears just ran down my face.  But I couldn’t wipe them.  They rolled down my face and splashed onto Wendy, and my arms were pinned beneath her.  I couldn’t wipe my own tears and other people had to wipe them for me so they wouldn’t fall on my impossibly sick child and I couldn’t do anything about it.

That was my most  helpless moment.

It is unlikely that I will ever be that helpless again, because I know so much more, can do so much more, and Wendy is so much stronger.  But it helps to remind myself that even at my most helpless, that people were there to support me, and even at my most helpless, we all made it through.

And we will again.

(A Note about Picture:  This is Michael holding Wendy, same day as described above.  A picture of me wasn’t taken.  It turns out it had been three weeks of being in the hospital.)