Why?

"Mommy, I hate oxygen! Why do I have to wear it?

Your heart is sick and needs rest.

"Do other kids have to wear oxygen and get armies [Hizentra infusions]?"

Yes, honey, they do.

"Really?  I'm not the only kid who has to wear oxygen and get an army."

No, honey.  Other kids wear oxygen and get armies.

"Other kids are like me?"

Honey, I'm not sure there are any kids exactly like you, but other kids need to get armies and wear oxygen.

"Why do other kids need oxygen and armies?"

Other kids have DiGeorge's Syndrome and need armies.

"Like me?!?"

Yes. And other kids have pulmonary hypertension and need to wear oxygen.

"Like me?!?"

Yes.  Some kids with pulmonary hypertension also have to get poked like you, but they don't only get it once a week, they have to wear it all of them.

"Not only on Sunday?"

Nope, not only on Sunday.

"Why, Mommy?"

Their pulmonary hypertension is different that your's DQ, so their doctors gave them different medicine.

"How does an army help the lungs?"

No, sweety.  The other kids don't get armies with the needles, they get other types of medicines that help open up the vessels in their lungs.

"Why do I have different medicines?"

You are different.  

"Am I the only kid in my family who has to wear oxygen and get an army?"

Yes, honey, you are.

"But, why?"

Remember, you were born missing a piece of your map.

"What map?"

We all have maps called chromosomes that taught our bodies how to be built, like directions.  When the egg and sperm came together to make you, you had a map, but it was missing a small piece, so your body didn't know how to put everything together. Without that small piece of map, you were born missing parts of your heart and lungs and other things.

"Why was I missing a piece of my map?"

I don't know, honey.  I don't know.

"But, why is my heart sick?"

Even though you've had lots of surgery, your heart is still broken.  You are still missing half of your lungs, so it is very hard for your body to keep oxygen in it.

"Why does your body need oxygen?"

If oxygen doesn't go to parts of your body . . .

"It dies."

Yes.  If you don't get oxygen to your brain, it will die.  If you don't get oxygen to your fingers, they will get very blue and eventually die.

"Why do they get blue, Mommy?"

When blood doesn't have oxygen, it is blue.  That is why Daddy and I worry when you start to turn blue on us.

The Dancing Queen remains quiet for a stretch, very contemplative and sad, then asks "Why do you and Daddy worry about me, Mommy? When I turn blue, will I die?"

Yes, honey.  We worry when you are blue or swollen because your heart is working too hard and we don't want you to die.  But most of the time, when you are blue, you're not sick enough to die.  And right now, you're really pink!

"What does it mean that I'm pink, Mommy?"

When you're pink, you have lots of oxygen.

"Mommy, you should have put my oxygen on my earlier today when I watched the Lorax."

I didn't know you needed it, DQ.

"Mommy, don't kid.  You always take care of me and know when I need something."

I'm sorry. I'll make sure to put your oxygen on you more often.

"I love you, Mommy."

I love you, DQ. I love you.

Monsters

Thunder boomed this evening at bedtime and TRex was scared. As he searched for his puppy dogs and sunk deeper into his bed, where I had just kissed him goodnight, DQ ran around his room, oxygen cord trailing behind. She ate all the monsters she could find so that her big brother wouldn't have to be scared.

He protested: "But there are more hidden under the bed and in the drawers!"

She ran to the drawers and put her hands under the bed, then gobbled up more of those scary monsters.

She patted her tummy and declared "I'm so full."

But TRex was still scared and just knew there had to be more monsters near his door.

DQ took a deep breath and gobbled up those remaining monsters as well, wiped her brow, and stated in a most matter-of-fact manner "now, I'm really, really full."

As the Mad Scientist and I shook our heads and laughed, TRex was saved.

Photographs

The phone rang. It was the social worker, verifying the details for tonight's family photo shoot.  The photographer  wanted us to bring extra dresses for the Dancing Queen to do individual shots as well. The social worker and I both laughed because DQ does love her outfits AND to be photographed. Of course I agreed to bring more!

She wished us luck for the night and I thanked her once again. Then I headed on my way into work.

Suddenly and unexpectedly, I began to cry in the middle of Washington Boulevard, Cobo Hall to my right, the federal courthouse to my left, cars around me at all points. F'ing emotions!

I continued across the road, hoping nobody would see the tears.

This is likely going to be the last professional photo shoot of our entire family together; the last professional photos of my beautiful, photogenic girl. How is that even possible? We've only had one other photo shoot with her. Will this only happen twice?  That is just NOT possible!

My mind flashed to the radio show I had just listened to--the caller who said if he had to flee his home, he wouldn't bother to grab photos or mementos because his memory was enough.  Clearly, he had never had to face the reality of losing someone he loved more than himself.

I don't want to forget a moment, a smile, a frown, a giggle.  I don't want to forget any of the outfits or the witticisms.  My memory isn't good enough.  Photos, videos, drawings, mementos, this blog . . . those will be the only pieces left to touch, to hold, to see. I know my love will never leave, but that guy who said mementos are not important is full of crap!

I Hate You

I'm sorry, but I hate you.

Not always and never for long, but I do hate you.

Please don't take it personally. Nothing about my hate is personal to you; it is only personal to me.

I hate you for a split second when I learn that your kid scored the winning goal at this week's soccer game.  The Dancing Queen has begged us to play soccer, but "without the running" since she can't run.  There is no soccer without running though. And when you post your child's victory, I hate you for reminding me that DQ will never get her wish of being a soccer star.  It's not your fault and I am very happy that your child is accomplishing their goals (pun unintended), but I hate you for a split second nonetheless.

I hate you the entire time my eyes are focused on the title of that sentimental (or is it comical) blog post you shared, like "A Father's Letter to his Daughter about her Future Husband".  DQ talks about her future family and getting married all of the time.  We know that will never happen.  And as syrupy sweet or knee-slappingly funny as the post may be, it feels like a knife to my heart each time I read the title. I know you don't post it to hurt me and under other circumstances, I'd probably share the sentiment, but I hate you for reminding me of what will never be.

I hate you when you say "she doesn't look sick" (I am also secretly kicking  you in the head). I'm sorry my daughter does not walk around topless so you can see her scars or the veins protruding from her abnormally large and swollen belly; or that you are too blind to notice the dark pools encircling her eyes or notice that she is skin and bone from failure to thrive.  I know you don't know what else to say and you are trying to make me feel better and mean no harm; but I hate you nonetheless for making me justify our decisions based on only what you see on the outside. Nobody likes to be judged on looks alone.

I hate you for suggesting that I am super human or some great person for simply living my life.  I did not choose to be the mother to a sick child with special needs.  I only do what I have to do to keep my family moving forward.  If I stop, we'll all drown and I love them all too much to allow that to happen.  You would do the same if it was your family--your child.  I hate you for suggesting that you couldn't do what I do because that makes me realize how alone I really am. And, of course, I am alone.  You don't understand.  And that is not your fault.  You've not been forced to walk to the tight rope, carrying the world on your back.  I don't want you to understand. I wouldn't wish this on anyone.  But I still hate you for the moment that you remind me that I am all alone.

I hate you for ignoring us; for pretending everything is fine.  When you suggest that we take our family on a 7 mile hike through the woods (without wheelchair access) or avert your eyes when we give DQ her medicine, I hate you for making me feel invisible and unloved. I know that is not your intent and you probably don't know what to do or say, but I hate you nonetheless in that moment.

Hate is a very strong word and I try not to use it for casual things. True hate can only be born of love--love that was mortally hurt.  It is the charred remains of the arsonist's muse. So, I guess it is unfair for me to say "I hate you." I don't really.

No, I hate CHD! I hate DiGeorge's Syndrome!

So, if you see darkness cross my eyes or my demeanor momentarily changes when we talk, please know it is not you. I know you've meant no harm.  You just reminded of what I hate most in this world.

Graduation

I ran to the gym as fast as I could without raising eyebrows.  It was 4:15 and the show didn't start until 4:30, so overly anxious was not called for.  But I wanted the front row, center!

F$%^&! I missed it!

I sat  in the second row, arm draped over the seat to my left, purse squarely resting on the seat to my right.  We would not have a repeat of the Halloween show, where we sat in the last row and all of the other parents stood in front of us, phones, iPads, and video cameras completely obliterating our view.  No way! I was not going to let that happen. Not at the Dancing Queen's preschool graduation!

Graduation.

I kept thinking "graduation".

We were told in December 2009 that DQ would never make it this long and here she was graduating.  I sighed heavily, soaking it all in as I stared at the "congratulations, graduate" balloons.

Graduation.

My heart swelled with pride.

Just as quickly, it dropped to my toes.

This was probably going to be DQ's only graduation.  Kindergarten is full day, so there is no need to graduate.  No, the next graduation would be from 5th grade and DQ won't make that.

My eyes started stinging.  A lump filled my throat.  I was crying in the middle of the crowd of moms, dads, grandparents, and babies.  I desperately tried to call the Mad Scientist as I willed him to walk through the door.  I needed a distraction or at least a hug by which I could hide the pain.  But traffic was bad and I sat alone, quickly wiping away tears, pretending to be inconspicuous, until the preschool classes began to stream in.

Her smile entered the muggy gym first.  Her excitement was palpable from across the room.  She waved to us and waited eagerly (if not patiently) for the show to begin.

Then they called her to the front.  Was my baby leading the show?!? Why hadn't I been told been told of her duet?

I rushed to get my phone into video mode.  Thankfully, MS grabbed it from me and captured the memory forever because all I could do was gush.

With one small voice . . .

The show continued and DQ was the star she is meant to be.  She watched me the entire time and I loved every minute.

When the music ended, I had my camera at the ready for the teachers to call the graduating preschoolers up to get their certificates.  Graduation.

My photo op never materialized though.

After the first child received their plastic baggie, filled with the certificate, school projects, and name tag, everyone started to move on to the pot luck portion of the evening.  There was no clapping for graduates; no good luck in kindergarten; it was simply a mad dash to the buffet line.

Dejected, I walked the kids to a table in back, where MS was waiting with DQ's miraculously gluten free dinner (he had given up watching DQ's commencement to ensure she had uncontaminated food).

For the rest of the event, my mind chanted: "There was no graduation ceremony for DQ and there likely never will be." My steadfast mantra: "No graduation. No graduation. No graduation."

I couldn't leave that hot, sticky gym fast enough.  And when I remembered an early morning appointment, I insisted that we leave immediately.

As we drove home though, the kids regaled me with their stories of the day and cracked jokes that were so dumb they made me laugh.  I totally  forgot what I was missing and relished what I already have.

The evening may not have ended the way I expected, but at least I have two small voices helping me to see the way.

Don't Know

I don't know who I am any more; where I belong; what I am doing.

Each day seems normal, but how can that be!?! Why do I still have to work, go grocery shopping, do laundry, when my daughter is dieing!  The only thing I want to do is be with DQ, TRex, and MS and spend time with them; snuggle, laugh, play.  I want to enjoy every minute of DQ's time. How is it conceivable that I'm not with her always, soaking up that love?

And yet, I go to work each day. I make her stop goofing around when it is time to go. She still has to be punished for hitting me when she doesn't get her way.

This dichotomy acts as dull scissors, tearing more than cutting through my core, removing all logic, leaving only the rough ends of emotion behind.  I sometimes check the mirror for evidence of the wounds, certain they beckon to the world in a manner only matched by flashing billboards pointing the way to tourist traps.

And at many points during the day, I get angry at myself for hosting such a billboard, screaming so only I can hear: "She is not dieing today!"

Then I convince myself that DQ is completely fine; that all of this has been a ridiculous nightmare; a mere figment of my own overactive imagination. Maybe I imagined the swelling? Maybe she isn't sick at all. The last surgery worked and I'm crazy!

But what is the truth? I meet with the hospice professionals. They make it all feel so very real and matter of fact. They treat us like the Dancing Queen "belongs" and we "belong".  But is this whole charade my fault? Could I have tricked everyone? Maybe  hospice is not right for us. Did the surgical board feel like DQ wasn't going to live simply based upon my observations? Clearly, I'm unqualified to judge anything. I can't even tell what is real any more!

I just don't know.