The Gift of Life: Could You Do It?

This Thursday, February 1st,  is the day that we celebrate as Wendy’s Kidneyversary, the anniversary of her kidney transplant, a day that changed all of our lives forever.  But we got the call about the kidney and she went into the operating room the day before, January 31st. That’s the date on all of the records. She just  didn’t come out of the operating room until early morning, February 1st.

So why do we celebrate on the next day?

Let me explain.

I can’t celebrate a day that another mother lost her child.  I just can’t do it.  Her child’s death helped my child’s life, and that is a wonderful, wonderful thing.  But I can’t celebrate on that day.  I give that day to the mother of the child, the fourteen year old boy, to mourn.  That is the worst day of her life.

And I cry with her.  I mourn.  I’m crying now as I write this. Imagine, just *imagine* losing your child.  The baby you held.  The boo boos you bandaged.  The first grade Pilgrim plays and the fifth grade choir.  Eighth grade with awkwardness and anger and smelly clothes. Even the bad days, wouldn’t you take them, than the alternative?  Wouldn’t you?

Imagine hearing that your child has died and being approached, delicately, by the doctors about donating his organs.  All the lives that could be saved.  Could you do it?

Could you?

This is Wendy’s 9th year with her kidney.  She has done inspiring things. Her life is a testament to organ donation.  In years past, I have written letters to the mother of Wendy’s kidney donor, and I have written about all of the things that this kidney has done, all of the countries it’s gone to and all of the things it has helped Wendy to do to succeed.

This year, though, I’m asking you, the person reading this, to become an organ donor, if you aren’t one already.  It takes a minute. The link is here.

Don’t make your loved ones have to make that decision, of organ donation, on their worst day.

Make the decision for them.  Give the gift of life.

And please help me to celebrate on February 1st.  Nine years!

Thank you!

 

 

 

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Sometimes You’re Not Ready

Sometimes you’re not ready to hear the bad news.

Bad news:  the news the doctors need to tell you, the diagnosis, the prognosis, the estimations, the best guesses.  Sometimes, even if you want to be, emotionally you’re just not there yet.

When Wendy was struck with her initial illness,  the doctors didn’t have a lot of positive things to say.  She was incredibly sick, and if she survived, there would be a lot of lingering health problems to contend with.  I could tell just by the looks on their faces during morning rounds that things were not going well.  Many years later, the division chair of Infectious Disease told me, “I dreaded coming into your room every day, because I never had any good news for you.”

They did their best to deliver the bad news to us slowly, and sometimes we were receptive to it, and sometimes we weren’t.  It is hard to hear from anyone that your world has been completely altered and some doctors are better at delivering bad news than others.

I remember one of the first doctors who came in to deliver bad news.  It turns out that Wendy’s pancreas was pretty much destroyed, making her an insulin dependent diabetic.  Unfortunately, that is  how the doctor opened the conversation, over Wendy’s hospital bed, in the Pediatric Intensive Care Unit.  She looked at me and said, “Don’t worry, some day in the future Wendy will come to you and want a cupcake, and you’ll know that it’s so many carbs, and you’ll give her the insulin.”

And I remember thinking,  in that moment, that she was absolutely crazy.  I would never, NEVER, be that ok with giving my daughter insulin.  I thought that she might as well be telling me that I’d never notice that hook she now has for a hand and she will eventually learn how to tie her shoe. (Just an example, Wendy’s hands are fine.)  I remember thinking that it was all too overwhelming to bear.  Blood sugar checks eight times a day?  Shots?  Carb counting?  Seriously, What the Hell?  How could this doctor be so callous in her delivery?  Didn’t she have a heart?

A few years later, when Wendy was in kindergarten, a student brought in cupcakes, and the nurse called me.  I approved the cupcake, instructed the nurse to give her insulin for sixty carbs, and hung up the phone, no problem.

Instantly I remembered that day in the hospital.

Damn. That doctor was right.  I just wasn’t ready to hear it.

While Wendy was initially in the hospital, other days were harder.  The day the doctors took us into the conference room to break the bad news about Wendy’s long term condition.  The charts we had to look at, the medicines we would be expected to give.  I remember crying so much that there was no point in trying to stop the tears with a tissue, they just silently ran down my face.  The doctors looked at me with pity and said, “We can do this another time,”  and I replied, “I’ll cry like this then too, let’s just get it over with.”

I later learned that the doctors call that particular conference room the “Room of Doom.”

Then the  the doctors told us that Wendy would need a kidney transplant.  Almost every doctor in the practice told us at different times.  The first doctor told me early on, in the parking lot, in passing.  I hoped he was joking.  Two others told us while Wendy was in the hospital.  One told us in the outpatient clinic.  It wasn’t a sit down intervention style of news breaking like in the “room of doom”, it was just giving an idea of what was coming up in the near future. No tears those times, because the news seemed so abstract.

I remember meeting with another mom whose daughter had a kidney transplant, who told me that I’d likely have to quit my job permanently to take care of all of the details of Wendy’s illness, and the tears came back in a flash. Nothing was going to be the same again.  There was no pretending that it would be like it used to be, I was the mom of a chronically ill kid and all the rules had changed.  It’s fear of the unknown combined with the crushing knowledge of what you ALREADY know that makes it so hard to bear.

Sometimes the messenger IS the problem, like the doctor who tells you bad news like ripping off a band-aid.  It stings and you wonder if they couldn’t have been just a tiny bit more gentle. An ophthalmologist once  told me that it didn’t matter how well we controlled Wendy’s blood sugar, that she would probably go blind eventually anyway.  That could have been more tactful. I still wonder why she said it that way. Some people don’t think about the consequences of their words on a patient or her parents.

Even if the doctors do the best they can to tell you, even if they explain it clearly, even if what they says makes sense.  Sometimes you’re just not ready.

But you will be.

With time. With Healing.  With understanding.  With education.    With support.  With love.

Be gentle with yourself and this journey.

You will be ready to hear the bad news, and move forward.

 

Dear Mom of My Daughter’s Kidney Donor

Dear Mom of My Daughter’s Kidney Donor,

In just a few days we will celebrate the seventh anniversary of my daughter’s life saving operation, the successful graft of your son’s kidney.  Every year I prepare for this day, that is filled with such conflicting emotions.

You see, my daughter was so very sick and had been for almost two years at that point.  She was on five different blood pressure medicines.  Her heart had been weakened.  She was only allowed 750 mililliters of fluid a day, that we handed out to her a tablespoon at a time.  She was on fourteen different medications, that we gave to her every two hours around the clock.  We checked her blood pressure twice a day.  We checked her blood sugar eight times a day.  She was on a low potassium, low sodium, low magnesium diet.  She had two doctors’ appointments per week, one blood draw per week, and we spoke to her doctors twice a day on the phone.

Our lives revolved around keeping her alive.  There was no respite.

It was difficult to acknowledge  that I couldn’t be the donor, nor could my husband, nor could any immediate family members.  We had to jump through the hoops of getting on the list for a deceased organ donor, and we had to fight the insurance company to let us have the operation at the hospital that we considered to be our medical home, rather than the hospital on the other side of the city that the insurance company did the most business with.

Weeks went by and she continued to fail.  The doctors kept saying “Keep her healthy, the kidney is going to be coming soon.”  Her blood pressures were increasingly more difficult  to control.  I remember planning for her fifth birthday on January 9th, a swimming party at our local pool and while getting all of the decorations ready, breaking down and weeping because I wasn’t sure that she was going to have another birthday and then pulling myself together because it was going to be happy, dammit, it was going to be her best birthday.

We had a false alarm.  A kidney was ready.  We raced to the PICU, we brought her to surgery.  We went upstairs and waited.  The surgeon looked at the kidney and turned it down.  We were devastated.  I  can’t tell you how horrible that night was.  Wendy had finally reached the point where she had to go on dialysis, and so a few days later she went back into surgery to have the catheter placed.  I had to go for training to learn how to run the dialysis from home.  Supplies were ordered and sent to our apartment near the hospital.

To add to the worry, I was six months pregnant and wondered how long I was going to be able to keep everything together. These memories always are accompanied by the heaviness of pregnancy.  I wondered when the baby arrived, if I was going to be able to do everything that needed to be done.

On the night of January 31st, Wendy was in the hospital recovering from her catheter placement.  The nurse came in excited.  There was a kidney on its way.  We were to prep for surgery.  Now.  Wendy’s nephrologist came over from her home and brought Wendy a snow globe to keep her busy while we got her ready.  It was a weekend, at night, so the operating floor wasn’t busy.  In fact, it was really, really quiet.  I wasn’t allowed to go into the surgery with Wendy because of my pregnancy, so I waited in the hall, looking in to the surgery theater when the door opened.

I remember when the fellow walked down the hall with the kidney.  In my memory, the hallway feels very long, but I don’t know if it actually is in reality.  The kidney was in a wax covered cardboard box. The fellow carried it carefully, but had to put her mask on before entering the surgery room, and so she held onto the box with one hand and put the mask on with the other, and I worried that she would drop it!  Seriously, don’t they have a cart or something?

Finally, Wendy got settled, they got started, and we had to wait.  Again.  We got the call that everything went well and we were to meet them in the PICU around 2 am, February 1st.  We saw her come up in her bed.  The kidney had already produced urine.  After almost two years, it felt like a miracle.

From that day forward, she has continued to thrive.  Medicines were shaved down and removed altogether.  She progressively got stronger and stronger, exceeding what her doctors even expected.  Today, she runs a mile in under seven minutes, she competes in triathlons and wins them.  She plays soccer, skis, swims competitively.  She is an amazing and compassionate kid, a good big sister, thoughtful beyond understanding.  She is the kid that gets up for the old lady on the train.  She is the kid who gives her balloon up when the toddler loses his to the air above.

She still has hurdles, still has health issues.  She is still a diabetic, she still takes medication daily, worries about infections, has some dietary restrictions.  But in comparison these are manageable things.

We call the anniversary of her transplant her “Kidneyversary” and celebrate it like a birthday, with friends coming over, chili for dinner (kidney beans!) and a cake.

But, Mother of my Daughter’s Kidney Donor, I have felt guilty about celebrating the life of my child when your child has died.  That the best day of my life, the fulcrum of it, the time stamp where everything else is measured against it as “before the transplant” or “after the transplant” seems horribly unfair knowing that it is also the fulcrum for your life as well but for the opposite reason, the nightmare of every parent.

My only solution to this has been to make the official date of the transplant in my mind be February 1st, when the surgery was finished, not when it began the night before.  On the 31st of January, I give you the day to mourn, and I mourn with you, for the life of your child,  your fourteen year old boy, who would have been twenty one this year.  It is the next day that I celebrate in gratitude for your amazing gift to my family.

Wendy knows about your son, that her kidney is  a “boy kidney” as she calls it.  We give thanks to you and your family at our holiday toasts, I give thanks for your every day in my morning meditations.

I guess ultimately, what I want you to know is how often I think of you, and your son, and your sacrifice.  Your gift is truly a gift of grace, one that you gave and expect nothing in return.  In fact, your gift can not be measured, and there is nothing I can do to repay  you.  I can only be grateful.

This letter is written to you to let you know that I truly am.  Thank you, thank you, from the bottom of my heart.

Sincerely,

Darcy Daniels