Tuesday, November 17, 2015


Good morning, sweet girl! How did you sleep?

"Good, Mommy."

Are you ready for the day?

"Yes, I guess."

What's wrong DQ?

"My best friend ("BF") plays with lot of other kids now and won't play with me or eat lunch with me any more."

I'm sorry to hear that.  You know, friends come and go as you both change and grow and interests change. She is probably meeting other kids in her new classroom that she wants to know better, just like you are.  It doesn't mean you have to lose the friendship you've had or let go of the warm memories.  You can keep her in your heart even if she chooses to play with other kids at recess. 

"But I miss her and I want to play with BF."

I know, honey, it's hard when friendships change, but it is part of life.  Everybody goes through this from time to time.  One of my favorite quotes is: ""It happens sometimes. Friends come in and out of our lives, like busboys in a restaurant."

Then I had to explain what a busboy is and the Dancing Queen asked: "But why do friends go?"

There are so many reasons, baby.  Sometimes you start liking different things.  Sometimes the friendship is a reminder of something one friend doesn't want to remember.  Sometimes there's fights. Sometimes you just become separated by distance. There could any number of reasons or no real reason. It just happens.  That is part of life.

"But Mommy, BF's dad told her she was no longer allowed to play with just one kid all of the time so she cannot have lunch with me or play with me any more."


"Why would he say BF can't play with me any more?"

I had to do some very fast thinking and try to hide the anger and frustration I felt at this man I have never met.

Dancing Queen, I don't know why specifically he wants BF to not play with just one kid, but lots, but I can imagine he feels this way for the same reason we send you to the school you attend.  

"Why is that, mommy?"

Well, did you know your school is one of the most diverse schools in the state?  There are all types of kids with all types of backgrounds at your school. With so many kids with parents from around the globe, you get to learn different things and the more cultures and backgrounds you are exposed to, the better person you will be because you can understand more. I would guess that BF's dad wants her to learn about other people so that she can have a broader knowledge of people and understand more about life.

"I don't understand, Mommy."

Do you remember the many conversations we've had about people doing bad things to others simply because those people looked different or believed differently?

"Yes. They shot Martin Luther King and killed people in Paris because they were different."

Yes. One way to help stop that sort of hate is to get to know other people, different from yourself, with different backgrounds, different cultures, different religions.  Because as you get to know people who are different than you, you realize that . . . 

"We may be different on the outside, but we're all the same on the inside."

Exactly.  Think about your class.  Does everybody look the same? Do they all have the same skin color? Wear the same clothes?

"No, but Mommy, if they looked inside me, they'd see I'm different."

When we say we are all the same on the inside, we're not talking heart and lungs.  We're talking feelings.  Each of us feels sad sometimes; each of us feels happy, angry, lonely, scared sometimes.  We are all the same on the inside because we all feel--just like the movie "Inside Out".  That is how we connect with other people--through feelings, through talking and learning that we all feel.We can all hurt and be hurt.  We can all laugh and smile.  We all love.  Everyone has that in common.

"But Mommy, why would BF's dad not want her to play with me?"

My guess is that BF's dad wants her to talk to lots of people, to learn about them, to connect to them, so that she can understand more people and learn different ways of life. And by telling her to play with other kids, he's not saying she can't be your friend any more, just that she needs to meet more people and get to know them. Just like you became friends with V for the first time this year.  She is from a very different culture than us, right?

"Yeah! The Indian dance she does is so fun and different."

But you two are similar on the inside, right?

"Yeah. We both laugh at the same things."

BF's dad probably wants that for her too.

"I guess."

It's okay if it hurts. You are allowed to hurt when you can't play with your best friend much any more.  But remember, this is your opportunity to get to know somebody else as well. No matter what happens with BF, you can still keep her in your heart.

After hugging my sweet seven-year-old for a very long time, she slowly walked away to brush her teeth.

Hours later, I still can't shake the feeling that washed over me as DQ told me all of this. I was sad, angry, frustrated, hurt, all of the above and so much more.

I've been dealing with DQ and friends (or lack of friends) for yearsShe's never quite fit with her agemates, but BF was different. BF loved her even through their differences.  The girls lit up when together.  BF would push DQ in her wheelchair so DQ could come along. BF is one of those girls all of the others want to be like, but she would choose DQ to talk with and laugh. 

Earlier this schoolyear, DQ was not invited to BF's birthday party.  I knew about this through Facebook and it hurt, but DQ did not know (at least she did not tell me).  I figured the girls were drifting apart, but after that, whenever they were together, the girls were the same as always.  There'd be a ton of other kids around and BF would seek DQ ought to have fun together.

Then, this morning, learning that BF's dad doesn't want BF to be best friends with DQ any longer, it all came together.

BUT WHY??????

If DQ has been mean to BF, shouldn't I have been told?

DQ would have told me if they had had a fight. She always tells on herself.

If DQ and BF were transitioning apart, why would BF be forbidden to play with DQ? Let the friendship take its natural course. 

The only reason for forced segregation of the girls, at least in my head, is because DQ is dying. Logically, I can see  a dad rationalizing that ending the friendship before DQ dies would make the death hurt BF less.

But . . . REALLY? 

Teaching your child to abandon (and ostracize) their terminally ill friend because being close to them is too hard seems like a totally fucked up lesson.

Maybe that's why so many people do cruel things in this world: rather than facing the hard lessons, people choose the easy way out and go around the mess. Personally, I feel like we need to  admit that life is messy and part of growing up is learn to deal with the mess, even though it is unpleasant and hard.

Maybe I'm all wrong. But if DQ has done something wrong (other than dying), I wish they would talk to us so that she can know how her behavior affects others.

No matter what the reason behind BF's dad's decision, it sucks and it hurts that two kids who were the best of friends have to be torn apart rather than life taking it's natural path.

Monday, November 16, 2015

Running Away

Yesterday was hard, so very hard.

The day before, Saturday, DQ was in a lot of pain, but had big plans.  She forced herself to enjoy the moment, despite the pain. By the end of the day, she was too exhausted, too spent to walk from the handicap space at the restaurant to the table.  We had to use the wheelchair. A first for such a short trip.

So, on Sunday, DQ was extra tired. She tried to be happy, but she did not have the energy to maintain the joy. She had to have many moments alone to calm down.

At one point, after a big meltdown and fifteen minutes to cool down, I went to DQ and held her. She explained that she doesn't know why, but lately, she just feels angry.

I asked her if she was in pain (I knew she had been for days).

She said: "Yes, Mommy, and I don't feel good.  I don't know why, but I don't feel good."

I know, honey.  Do you think you might be angry because you are feeling worse?

"I don't know, Mommy. I don't know why I'm angry."

That's okay, DQ. You don't have to know why you are angry. 

I know sometimes I get angry or irritable when I don't feel well.

"Really, Mommy?"

Yes, but it does not give me the right to treat people badly.

In her most downtrodden voice, she obliged me by saying: "I know. I have to be nice."

Yes, but we do understand if you are not feeling well and you can tell us that.  We will help you as much as we can.

She thought for a long time, snuggled deep into my arms.

"Mommy, sometimes I feel like running away."

My heart broke in two, but I somehow managed to assure her that everyone feels like running away sometime, but that running away doesn't solve problems, it just leaves them there for another day and takes you away from your support structure and the good things in life too, like family, love, and home.

"But, Mommy, why does life have to be so hard?"

I don't know, baby. I don't know. Your life is very hard, but we try to help you where we can. We try to give you as much love and enjoyment as we can, but I do not know why your life has to be so hard. It just is. I'm sorry.

"I love you, Mommy. You are the best Mommy in the world."

I love you too, baby. You are the best daughter in the world.

Friday, November 13, 2015

Bedtime Routine

Just like every family with children, we have our bedtime rituals.  We head upstairs around 7:00p.m. and the kids get their jammies on.  DQ does a running leap onto my bed, where MS has laid a pillow at the foot.

DQ lays there while MS brushes her teeth (doctors orders to get her to behave better at the dentist and get better clean).

When MS finishes, DQ jumps down from the bed, runs to the bathroom with her toothbrush spinning, climbs on her stool, and finishes the job herself.  She chooses the exact dixie cup out of the stack (pink of course).  And rinses.

Then it is off to her bedroom to choose a story.  DQ still loves the shorter books that give one entire story in a sitting, with lots of fun pictures.
Pinkalicious is still one of her all-time favorites.  Mickey too.  Nowadays though, DQ reads us the books.  So, after DQ picks out the perfect book, she scurries back to our bedroom, does another running leap into the bed, snuggles down between MS and I and begins to read.
Perhaps you are wondering where TRex is in all of this. He is so pokey! He will be in the bathroom brushing his teeth by this point and we'd be lucky if he has the tshirt he plans to wear picked out (he always wears one of MS's tshirts to bed).  TRex usually joins us in the bed for the story near the very end.

DQ reads the stories and she does so well. She is a very good reader.  I could listen to her for hours.  My favorite for her to read are the Gerald and Piggy books because she does the most wonderful voices.  DQ considers herself Piggy.
When the story is done, she jumps into her daddy's arms and lays her head on his shoulder as he carries her to her room.  I love laying in the bed, watching them walk away. It is so sweet.
 Last night, I laid in my bed, watching her be carried away and she asked "Are you coming, Mommy?"

Of course, baby. I'll be there in a minute.

And then I sobbed because I know these moments are fleeting. There is going to be a time (potentially very soon) that she won't be walked down that hall at the end of the night in her daddy's arms. She won't be reading me stories. She won't be doing running leaps into the bed.

My heart literally ached. My body shook. HOW CAN THIS BE HAPPENING?

Too many nights these days, she's already too tired to read. Or we have to carry her to the bed.

And I know much of my pain is directly related to a particularly bad night DQ had the night before. I know I was extra tired from lack of sleep and additional worries. But that does not change the fact that despite our recent respite; the moments of calm we've lived in these last several months, DQ remains very sick. She is dying. And in my weak moments, I feel it acutely.

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?
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.
Related Posts Plugin for WordPress, Blogger...