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.
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...