Thursday, June 25, 2015

Waves of Grief

The phone rings. I pick it up, answer the question, then hang up.  I review some documents, answer more questions. In the midst of reading an innocuous document, recounting notes of disputes I am litigating, I'm suddenly knocked down.  There is a catch in my throat and tears begin to stream down my face.  The sadness envelopes me in such a strange and powerful way. I can no longer concentrate and all I want is to hold my family close and never let them go, but of course, they are not with me as I am at work.  My body aches from the depths of the grief.  It takes hours, sometimes an entire day to shake the feeling and return to normal--whatever that is.  Then, just as suddenly, it happens again.

I don't know why I'm having these waves of grief; these moments of complete sadness.  There is no rhyme or reason for how long it lasts (at least that I have figured out). Some weeks simply are hard for no apparent reason. Obviously, DQ is still sick.  She is still in hospice.  She still struggles daily.  She is still the same size she was a year ago. And the deep dark circles under her eyes are worse now. But it really shouldn't be cause for these sudden waves of crushing sadness. Nothing dramatic has happened, yet I am having dramatic, inexplicable reactions.


Perhaps if I kept a log, I'd know where it all is coming from. Perhaps if I saw myself from the outside, I'd question why this hasn't happened all along. Perhaps 7.5 years of living in an emergency has finally worn me down and I can no longer keep myself together. Perhaps there is no answer. Perhaps that is the answer.

Thursday, February 19, 2015

Emergency is Over

For so long (over seven years now), the Mad Scientist and I have been in emergency mode.  Comfort and peace did not seem possible.  In the back of my head, I was waiting for the calm before I would try to find a semblance of normalcy. I was constantly telling myself: "When DQ is better, we will do this or that; we will be happy."

The whole sick child thing is weird.  It made the Mad Scientist and I closer in many, many ways, yet further apart as well. I'd let him do his thing, grieve and deal in his own way. I'd do my own thing. All the while, we were both alone, even though we were very much together and doing everything as a team--except grieve.

In the earlier part of last year though, the Mad Scientist and I decided we couldn't continue to grieve alone.  We started to see a therapist together. We go every other week to work through our grief together and to understand each other better. We are trying to build ladders so that that wall that is our differences in dealing with a sick and dying DQ can be climbed. It has been a lot of work, but worth it.

The best part is that we are doing this together.  We are no longer alone in our grief.

I have learned so much about the Mad Scientist and what he is going through.  It has been such a blessing.  I do feel closer to him in a way that has been missing for so much of the emergency period.  And I know how to relate to him better and how to let him grieve.

What has been surprising though is how much I've learned about myself as well.

Last week, I had one of my biggest revelations. I'm still working through it in my head (hence the need to blog), but I wonder why the thought never materialized before.
Life sucks now because DQ is sick, but life is always going to suck in that way: DQ is always going to be sick or else she will be dead and that will make life suck all the more. We have to learn how to live despite the fact that nothing will ever be completely good again.  There is never going to be a moment in the rest of my life that will not have a tinge of pain, so I have to learn to make peace with that.
I know this should have been obvious for a long time--at least since DQ was admitted to hospice--but it hit me like a ton of bricks.  It continues to hit me; almost like the bricks are falling one at a time through a hole in the burlap bag hanging overhead and I can't move out of the way . . .

Saturday, January 24, 2015

Top Ten Things To Do For Parents of Critically Ill Children

When we were funeral planning, I started writing this post.  I just found it today when I was seeing what thoughts I had that hadn't quite made it to the finished product.  The more I thought about this post, the more I felt compelled to complete  it as its been mulling around in my head since October.

At that time, I found myself listing things I didn't want to happen during our immediate grief--things that trigger anger in me; that I know will cause me to explode at an unsuspecting good-doer.  During our funeral planning, I also identified people  who could shield me from the horrible things I've seen well-intentioned people say to the bereaved (and I may have said before I opened my eyes). I started thinking of plans to escape the ignorant statements people spew because it makes them feel better and they've never thought about how it feels to the person who is grieving most.

It is too soon for me to write about all of that. It's not my experience yet.  I only know what I know from watching others mourn.  I know my fear of what people will say to me, but I don't know how I will really react.  I may never be able publish a post about that because too many people troll to start a fight and I don't have it in me even now and when I really have the perspective necessary to write THAT post, I will be way more vulnerable.  That's why I identified people to help me.

What I am strong enough to say is what I know today: what I've lived and what I still live everyday. It is a similar post, but from the perspective of a mom to a terminally ill child. And if you want to troll and tell me I'm selfish, I'll tell you that's right. This post is my top ten wishes of what people would say and do for us.  I think the same is true for all families with critically ill children.  Keep this wish list in mind when your friend or family member has added full-time caregiver to their list of parent chores.
  1. Don't ignore that my child has a terminal illness.  I don't mean it has to be a topic of conversation (unless you have questions), but it does mean that my concerns regarding my child with regard to everything have a different depth than what goes into your calculus when thinking about concerns.  While it is perfectly normal and fine to be concerned that your healthy child is having difficulty understanding a concept in math and you are worried that may hold them back academically, don't be annoyed when my child has the same difficulty and I say "such is life".  My child is not going to live to be an adult.  I'm not building her to be a successful adult. I'm building a successful childhood--that includes normal kid things like school, but we don't sweat the small stuff.  The concept will come and if it doesn't, I'm not that concerned.  We are not putting stress on a first grader to be a perfect student. (Same thought process with her still using a pacifier to sleep at almost 7!)

    On the same front, decisions about what I can do and where I can go are determined by my children. I can't leave town for a couple nights. I just can't. The nature of heart failure means that DQ can go from fine to on the edge in a matter of hours. Leaving town is not an option for me. I will be too worried. I almost had a mental breakdown a couple of weeks ago when I had to leave town for work. It doesn't mean I don't want to see people who live far away; it just means I can't go to you and I can't meet in the middle. It might not be fair, but life is not fair.
  2. Ask questions.  If you want to know why the Dancing Queen looks so healthy, ask! I will gladly explain as much as you want to know.  I've done tons of research about my daughter.  I know her diseases inside and out.  I don't talk about what I know a lot (even if I do talk a lot), but I will gladly share.  I've learned through the years that most people don't want to know what I'm thinking, I've learned, how I feel.  Or at least that is the impression given.  So if you really do want to know, ask.
  3. Never ever start a sentence with: "at least". If you hear those words coming out of your mouth, shut it. There is no comparison you can make that won't make the situation worse.  I'm of the opinion that the words "at least" ought to be banned from the American lexicon completely!
  4. Remember it doesn't stop.  DQ hasn't been hospitalized for a couple of years (knock on wood).  Part of that is because we do have her in hospice now and can do some things without the ER that we couldn't before.  Despite being in hospice, she is quite stable.  She goes to school and she looks "normal" on the outside.  But she is still in heart failure.  She still has a prognosis that she will not live to be an adult.  It was only two years ago, when her heart was healthier, that we were told she has 3-5 years left.  Because there is no emergency does not mean our worry has lessened or that our lives are any easier.  None of it stops.  I understand human nature is to be concerned for the first five minutes of a catastrophe and move on after that.  We have to otherwise we would go insane since there are so many catastrophes in the world.  But for us, this catastrophe doesn't end.  If you remember that when talking to us, it will give you perspective. 
  5. Help.  Especially when we are in the hospital, having big tests, or a illness has struck and we are locked in, help is so welcome.  While we appreciate the offers of help, we do not have the time or energy to call and ask for it.  Real help is showing up and doing it.  Don't expect us to entertain.  One of the best things ever done for us was when my aunts and mom came to our house one day when we were in the hospital and cleaned.  I will never forget it.
  6. Food is always welcome!  We love getting food.  There are days when it is just too hard to think about cooking. And most takeout can't be eaten by DQ, so we love food. If you do bring food, please make it healthy and in a container that never has to be returned (they sell disposable bakeware with lids now perfect for this). Having to return a container though is even harder on us than cooking in the first place.  It sits on the counter everyday reminding us again of more things we have to do. It is draining.
  7. Be there.  Having a sick and special needs child is lonely. You are constantly taking them to medical appointments, meetings at the school, and pharmacy. Our spare time is spent researching, making appointments, and trying to find ways to help your child feel normal.  (You would be surprised how much time is spent figuring out things to do that let my kids feel normal without making them feel worse about themselves because they have motor delays or heart failure keeps DQ down.)  Having a friend be there--sit and have coffee; come over. If you make a plan for your friend who is a special needs mom, a plan they do not have to make themselves, you will be a hero.  We desperately want to feel normal and be with friends, but don't have the energy to make any other plans.
  8. Go to the hospital. Sit on the sidelines, don't expect to be entertained, but be there. Bring veggies and good coffee.  Offer to sit with the sick child so mom or dad can pee or get some food (DQ would never let us out of her sight when in the hospital). Or if you can't be at the hospital, take their other children for a fun day (bring them to the park).
  9. Remember the siblings. If you bring a gift for the sick child, do the same for the siblings.  So many times, people feel bad for the sick child. That is proper because the child goes through hell.  But just because the sibling is healthy, doesn't mean they are not going through hell too.  Life in a house with a terminally ill child is hard on everyone.  Can't afford two gifts, don't bring any.  The kids don't expect gifts.  They do LOVE visitors though.
  10. Never say "everything will be fine".  That is one of my biggest pet peeves of all.  I hear it in tv shows all of the time too and scream at the tv (ask my husband, he will confirm). You have no idea if everything will be fine.  For us, it won't be fine. When you say "everything will be fine" to your friend, you are dismissing their real feelings in a negative way and diminishing what they are going through.  It is not helpful because it means you do not grasp the gravity of the situation.  Just don't say it!  Instead, you can say "I don't know what to say, but I'm thinking of you and want to be here for you."  Ask your friend if they'd like to share their concerns. Or don't say anything at all, but give a hug.  
I offer this question up to all of my friends who are moms to critically ill children or children with special needs: What would things would you add if this was your top ten list?

Friday, December 12, 2014

National Believe Day 2014

Once again, it's National Believe Day, where all letters to Santa dropped off at Macy's raises $2 for Make-A-Wish.  Every year, this event gets bigger and bigger and I couldn't be more happy. Make-A-Wish is truly an amazing organization that can use all of the help it can get.

Three years ago on National Believe Day, we were preparing for the Dancing Queen's wish trip.  Her trip was magical, even though emotionally draining. I will have memories forever. The granting of DQ's wish brought joy and excitement like we've never seen before and made this life easier. It was more than a vacation. It was truly a wish fulfilled.

While DQ no longer believes in magic and she knows Santa is not a real person, she still believes. On this National Believe Day, I hope you will drop your letter to Santa at Macy's and give another family a smile that will last through all the horrors of childhood illness.

Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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