How was your holiday? A simple enough question. Harmless it would seem.
And while my holiday was lovely and the kids were so excited, the question is not harmless and I dread it.
Every mom wants Christmas to be perfect; wants everyone to remember the magic of it all. But knowing this could be the last Christmas put so much more pressure on me. I wanted everything to be a memory--wonderful images that will stick for eternity.
Alas, somethings just aren't meant to be . . .
Every morning, the Dancing Queen awakes with sobs. Every day, no matter how easy we take it, her eyes have deep, dark circles. Each moment, we are closing in on one year gone.
How is it possible that I love her more every day? Haven't I loved her with all of my heart for as long as she's been with me?
And TRex, he grows to be such a good boy, yet there is a sadness about him as well. I can't stop any of it. How can I not stop any of it!
The Dancing Queen has begun to fight me with taking her medications. And the other day, she insisted that one day without them would do no harm. I tried to explain how very important it is to take her medications as prescribed; how they keep her alive. Her response will likely haunt me for a very long time: "But, Mommy, I have to die someday." She looked small as she said it, sitting across from me at the breakfast table. She wasn't in her booster and she was just so small, yet so wise. "But, Mommy, I have to die someday." Baby, we want you to stay around as long as possible. I almost begged her to take the meds, panic about to take over, when she simply picked them up and downed them.
It's been almost a year since we were given the hope of 3 to 5 years. What will the next holiday bring? Will she still be as active? Will life resemble anything nearly as good? Will it better? Will it be worse? How can I hold on to today just a little bit longer? With all of these questions swirling about, my holidays have not only left wonderful memories, but I am wounded as well.
It was Saturday afternoon. As I carried in groceries, the Dancing Queen cried out over the monitor. She didn't want to take a nap. The Mad Scientist tried to talk to her, cajole her into some sleep, but she didn't want to miss out on anything now that mommy was home.
I left the boys to put everything away and brought the Dancing Queen to my bed. I laid her down and promised to stay with her if only she took a nap. (The night before had been hard. The Dancing Queen's rest was broken by lots of pain--her ear filled with infection. Again.)
I needed her to sleep. She was so tired, exhausted.
After a couple of minutes and telling me several times that she didn't need to sleep, "just rest", her breathing steadied. Her eyelids stopped flickering. She stopped switching out pacifiers.
For a while, I just laid there, listening to TRex downstairs. He was making a lot of noise, excited to be spending time with his daddy. Then the doors banged one last time as the boys carried Christmas lights outside for hanging.
So, I laid there, head-to-head with my sweet girl, breathing her in. I watched her long, long lashes, unmoving now. When was the last time I had looked at them? They looked just as they did when she was a baby. She always had the longest eye lashes.
She made the faintest of sounds as she slept. And the constant hum almost lulled me to sleep.
But then I listened to that musical heartbeat. I started to count the missed beats and tried to find a discernible pattern in the way it would speed up and slow down. And as the Dancing Queen's body seemed to fall deeper and deeper into sleep, her heart never felt at rest to me. It didn't seem even either. There was no set rhythm.
And I was reminded of how fragile all of this is.
How much longer before too many beats are missed?
When will that faulty rhythm be too out of sync?
As I silently wept in my baby's hair, holding her tiny hand, I wished for the moment to last forever.
Instead, the Dancing Queen rolled over, leaving me . . .
I know a lot of really great parents. They put everything they have into their children. They put their careers on hold, wear the same pair of glasses and blue jeans for ten years straight, move to be closer to the place that is best for their kids. They will lose their house, their friends, their sanity to find a cure or a least a reprieve for horrible diseases. They do it all; reach the wall; and then do more.
And in the back of their heads is always the notion that if they do just a little bit more, sacrifice everything, reach every doctor, talk to every other parent dealing with the same issues, the answer will come. Their child will be saved. Because that is what we are told. Science has come so far.
And no matter how many times you are told that there is nothing to be done, the answer in the back of your head says: "But try again; there must be something more. So and so's brother's girlfriend's cousin's niece went to Borneo and was saved. Surely, there is a Borneo waiting for us."
And even if we don't chase after Borneo and we decide enough is enough, subconsciously we wonder.
As expecting parents, we were never told that our baby could die. Or if we were, it was only "a possibility" just as winning the lotto jackpot is "a possibility". So when we are faced with the reality that our child is going to die, we can't handle it. That is NOT the way it happens. There is a medicine for everything. Aren't we inundated with commercials everyday stating just that!
So parents sacrifice their lives. Children endure extra procedures and pain. And in the end, they die anyway. Why? Because we aren't told that children die. We aren't allowed to talk about children dieing unless it is in the context of freak event--completely abnormal. But there is nothing abnormal about children dieing. Until modern history, it was abnormal to have all of your children survive to adulthood. But today, when we are all conditioned to believe that the norm is living to be an octogenarian, parents are afraid to say things are going bad. Parents, in the midst of sacrificing everything for their last chance to save their child, are all alone because they feel abnormal in losing a child or like they didn't push hard enough.
No parent should have to shield their pain when they need the most support because society can't handle the truth. Children die. They die every day. Their parents are wonderful, amazing parents who put everything into their kids, yet the child dies.
Please don't hide from it. Please don't make a parent facing their worst nightmare feel isolated or that they have to protect you. Children do die.
I've been dealing with my own health scare--two large nodules discovered on my right thyroid. One so large that it completely replaced the right thyroid and caused me great discomfort (okay, pain), lots of choking, and some difficulty breathing. And they still don't know if it is cancerous. They don't think it is, but I won't know until Thursday for certain because I had the monstrous thing removed a week ago and I don't see my doc until then.
And while I know that it is probably not thyroid cancer because (let's face it), I have all of the symptoms for Hashimoto's Thyroiditis. And I know that thyroid cancer is one of the "best" cancers to get because it is highly treatable. Having this scare, well, scared me.
I've never felt more adult than I have in the last couple of months. The responsibility of taking care of my family has weighed enormously upon me when I faced the possibility that I might not be able to do it. What would happen to my family if I can't work??????
The Dancing Queen's medical expenses alone would cripple us in a matter of months. Would we have to stop her Hizentra infusions? Would that end her life sooner? We'd definitely have to pull out of hospice care for her until she gets really bad. There would be no more therapist for the kids.
Juxtapose all of those worries with the Dancing Queen's total descent into demonhood upon entrance to kindergarten and I've been a wreck.
DQ did NOT transition well. She was worried, scared, and a little (maybe a lot) paranoid of how she would be treated and seen by the other kids. That led to anger, aggressive outbursts, and many phone calls, meetings, and plans. In September, I was consumed with my doctors' appointments and procedures and DQ's endless parade of horrors. She would make what she perceived as a mistake in art class and start throwing chairs and kicking classmates. I would be called to the school. Or she had a bloody nose on the playground and the nurse took a shortcut back after cleaning DQ up (so DQ could play longer) and DQ started kicking and screaming and flailing about in the hallway because she thought she was not returning to recess. I was called when she wouldn't stop screaming after thirty minutes and was kicking the desks in the principal's office.
There was talk of suspending DQ from school in early October--6 weeks into the school year. Suspending a kindergartner! I can't even tell you the anger, sadness, and confusion I felt. I spent a solid 48 hours researching, talking, planning, and crying, only to have everything resolved and the proposed suspension completely removed from the table.
My life has been a giant ping pong match (ala Forrest Gump) with my head the tiny little ball being smacked between DQ's immediate problems and my overwhelming worry about addressing these problems and those to come if my sickness is worse than expected.
And somewhere in all of my worry, frustration, and fear, I lost my voice. I'm trying to find it now. I have to work through this and the only way I know how is to write and put it out there. So, I forced this blog open today. I made myself write even though I didn't think I had anything to say. Perhaps I'll get there again. Perhaps this blog will just be full of forced ramblings. Either way, I hope it helps me find some semblance of normal in this new and very scary world.
TRex will turn 7 a week from Monday. Since his birthday party is next weekend, we celebrated as a family this weekend by going out to eat Friday night. TRex chose Maggiano's because of their big rectangle pizza that he loves (DQ and I love it because they offer a good selection of gluten free food).
The dinner was wonderful. We spent the evening asking TRex to say "th" words so we could laugh at his toothless pronunciations (he lost his top two front teeth this week). TRex told us about his plans for his Return of the Jedi Party and which of his guests would play each role. TRex intends to be the Emperor, but good, the Mad Scientist Darth Vadar, and DQ Princess Leia. We discussed our days and just had fun together.
At the end of our extremely normal birthday dinner, TRex ordered cheesecake. The Mad Scientist surreptitiously asked the server to put a candle in it.
TRex's eyes grew big as he watched the candle-lit cheesecake come toward the table. There was no over-the-top singing to embarrass him, so he could concentrate on his wish. And that is exactly what TRex did. He closed his eyes and thought long and hard about his birthday wish.
After several long seconds, TRex blew out the candle. The waiter teased that he must be wanting something really big, while DQ begged TRex to tell her his wish. The Mad Scientist and I explained that TRex didn't have to share because it might not come true.
TRex wanted to share though. He needed to share this particular wish, so he declared that it was okay to share because it was for all of us. Then TRex blurted out that he wished that all of us would be together every year on his birthday. All the while, he was looking at his sister with the most love I've ever seen in his eyes.
I immediately burst into tears, unable to control myself. I think silent sobbing is a more accurate description. Even remembering the moment right now, I have tears streaming down my face. I can handle not being able to give my son a life-size At-At for his birthday or telling him we can't send him to the moon, but all he wishes for is his family to stay as it is--together--forever.
Oh how I long for that wish to come true for sweet, sweet boy. He worries all of the time. No matter how often we remind him that his sister is doing well today, he can't forget that she could be gone tomorrow. And it makes him all the more sad. Hopefully, if his birthday party is as big of a success as we hope, when he blows out the candles on his Star Wars cake, he will wish an average 7 year old wish and forget his very grown up worries.
Over the last month or so, I've noted what I feel is evidence of the Dancing Queen doing better. I have no idea whether her heart is larger or if her lungs are shredded further, but she seems to be doing better to me. I have noted that her baseline heart rate seems to have slowed and she seems to have more energy. I don't know if this is because summer camp is easier than school; because weekends are more fun; because flu bugs and cold viruses are dormant so not constantly attacking her body; because she was started on oxygen; or because of something else entirely.
I guess it could all be a fluke, but I think there's something to it. And what's more, I'm starting to feel she is improving. I know it in my heart.
I'm not delusional enough to think she is being cured in any way, but I'm no longer in dread because I just feel like she will be here a long time. Longer than I thought a couple of months ago at least.
With that, my worry is that I will become complacent again. I will try to catch up on work that was pushed down when I was in my heightened state of fear and anxiety. Or I will pass up opportunities to make extraordinary memories for her in favor of bedtime rituals and sanity the next day.
Don't get me wrong. I know those things are important too, but my balance over the last six months had shifted dramatically. Maybe that is why she seems to be doing better. Maybe she is happier. I don't know. But I do know that simply because she looks good doesn't mean she isn't in heart failure. And while I know that we will likely see a gradual decline over time, it very possible that her heart can just stop without warning. A fellow heart mom is saying goodbye to her son this week because of just that. He had been improving, everyone expected good things to come, and then he was gone.
Life is so fragile, yet so enduring. How do I fight complacency, without being morbid? How do I give DQ happiness without turning her into a brat? She needs to know that she is loved, but not be spoiled because of it.
I had what I consider a deep a conversation with a new acquaintance the other day. That conversation won't leave me. It continues to stick even days later. The conversation wasn't bad. In fact, I rather enjoyed it (for the most part).
I'm guessing it was a cultural thing, but the woman asked such intimate questions without hesitation or reserve. I grappled for answers, not because I didn't want to share, but because they made me think. I like that!
It is one question in particular that lingers though.
Then she asked if I had known about DQ's heart defects when I was pregnant. I explained that, yes, we knew.
Then, without reservation or pause, she asked why I didn't terminate my pregnancy if I knew.
Of course I knew how to answer the question. I was asked at the time if I wanted to terminate my pregnancy.
The woman wanted to know if it was a religious decision. I admit, I laughed at that. But I told her what I told the genetic counselor 5.5 years ago: Ending my pregnancy was never an option for me. DQ was my baby before I was pregnant. I loved her from the moment I felt the pangs of illness and knew that I was pregnant. There was never a choice. I had to fight for my baby and give her every chance at life.
I think it was really hard for this woman to understand. I don't know if it was cultural or because she has not had a child of her own or if it was something else entirely. I know what she perceived about my life scared the hell out of her. But she doesn't know DQ, doesn't know the smiles, the love, the hugs. She never saw DQ dancing in a hospital bed or felt the weight of her hugs. All this woman knew about was surgeries and hospice.
But I still think about that question each day. How dare anyone question whether my daughter ought to have had the right to live!
But ending my pregnancy would not have been right. DQ has so much more joy than pain*; so many more smiles than grimaces; so much LIFE.
And no matter what I have done in this world, my daughter has done more. I may be an attorney with an "important" job, but she is the one who inspires. She brings joy. My life would not have had the same meaning, the same depth without her in it.
If I could have one wish for the world, it would be that everyone understands that no matter how small you are, how short your time, or how alone you feel, you CAN make a difference. Touch one soul and you can change the world. I know it is possible. My daughter has proven that to me!
* Or at least she doesn't let the pain take away from her joy. I don't know which.
My mom gave a bunch of us heart moms necklaces last week. They consist of a silver circle with the word "hope" written in English on one side and French on the other and a small gold heart hanging from a silver chain. On Thursday morning, I saw the box sitting on my counter and decided to put the necklace on.
TRex asked me what it was and I explained that Ma had given it to me and to other moms working together to raise funds for new research into congenital heart defects.
I will never forget his response for as long as I live: "But, Mommy, there is no hope for DQ. Nobody can fix her heart."
He was so incredibly sad, so sure, so lost.
I tried to explain that you can never lose hope. And just because something is unlikely doesn't mean that it is impossible. I reminded him that his sister was right there, sitting next to him, loving him. I deparately tried to not let hope die in him.
It was only a year ago (10 months to be exact) when he planned to raise the most money ever for heart defect research--sure he'd find a cure for his sister.
What is all of this doing to my sweet, optimistic boy?
TRex's fears have multiplied over the last couple of months. He feels surrounded by monsters constantly. He knows they don't exist, but he still sees them in his room--thousands of monsters surrounding him.
I asked him to yell at the monsters and tell them to go away. He weakly complied, eager to help mommy: "monsters go away."
I yelled out and asked him again to do the same: "MONSTER'S GO AWAY! MY MOMMY AND DADDY WON'T LET YOU DO ANYTHING BAD TO ME!"
He wouldn't yell. He wouldn't repeat.
I needed to know why.
"Mommy, I can't tell you."
Do you know why, TRex?
"I know, but I can't tell you mommy."
TRex, have mommy and daddy ever let anything bad happen to you?
"No."
TRex, do you think mommy and daddy will let something bad happen to you?
He snuggled down into my arms, hugging me closer as the silence filled the room.
F'ing CHD is not only slowly taking my daughter, but it has also stolen my sweet, innocent son. I can't protect him any longer. He knows too much.
When I was a kid, I remember eating a lot of peaches during the summer. My grandmother would cut the peach in half and twist the fruit off the pit, then hand the pieces to me. I would beg her to let me grow a peach tree. And every summer, she always let me dry out at least one pit so that we could get inside and find that precious seed. I don't remember ever planting the seed, but there was always a peach pit drying on grandma's counter, right next to the tomatoes that fell off the vine too soon and needed to ripen a little more.
That was summer.
As I ate a peach on this sweltering summer day, I couldn't help but think about grandma and the peaches. I had to have been young when all of that happened. Grandma and grandpa moved to Virginia before I was in third grade. And the kitchen I remember was here in Michigan. I was the same age as my kids are today.
But what type of memories am I leaving for them? There are no peach pits drying (they won't eat peaches, preferring summer's abundance of raspberries, blue berries, strawberries, and grapes).
I clearly remember the summer afternoon that my grandma taught me to ride a two-wheeled bike. Neither of my kids can do that yet and TRex is almost 7! How much of that failure is a result of the kids never being home? If they weren't in summer camp all day, I'm sure they'd know how to ride a bike. If only I didn't have to work full-time, my kids would have the basic skills needed to live a good life.
I remember mornings with grandma pressing ice cream between two fresh waffles. Then licking the dripping sweetness off my hand. There was no rush, no hurry. My kids' summer morning consist of Eggos (TRex) and bologna dipped in barbeque (DQ). Yes, DQ tends to lick her hands, but only because she dips them in barbeque sauce. And we do not sit and enjoy, but finish with a mad dash to gulp down meds and slather sunscreen from head to toe before heading out the door.
None of it is the same. And that makes me sad.
I know the kids know no different and they are loving their summer. Each day is a new adventure and they have so much fun. We don't have any other choice really. But it makes me sad nonetheless.
"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.
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.
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!
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.
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.
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 wish the same wish every night: Please run to my room and hug me in the morning. Please wake up and yell "mommy". Please don't let this end. Please give me tomorrow. Please find a cure. Please hand me a miracle. Please let me wake from this nightmare. Promise me forever!
And in that desperate plea, the pain is unbearable. Ever fiber of my being screams "there is no other choice but to find somebody smarter; to scour the world once more." I can't give up fighting. Maybe, if I hug her tighter and I wish harder, the answer will come.
And when my mind hits this ridiculousness, I snap back to reality. I flip the tear-stained pillow and claw my way to sleep.
If you don't follow DQ's carepage and you don't know me in real life, you don't know that we were forced to decide a couple of weeks ago if we wanted to pursue heart-lung transplant for DQ or choose compassionate care. After weighing everything, we chose to stop fighting DQ's heart defects and choose life, allowing her to be a kid, doing kid things for as long as possible. It is the only choice that made sense for our family and the goals we set for DQ's life all along. DQ was officially admitted to hospice yesterday.
Now that we are no longer searching for answers and hoping for "fixes", life has been utterly calm; almost eerily calm. I think a lot of that has to do with the drop in endorphins from always pushing for the answer. We've been in emergency mode for over five years and suddenly, we're supposed to just live. It is very weird to get used to and we don't really know how to live like this. We go through the motions, spend a lot more time snuggling and having fun, but there is a giant sadness that envelops us and rears its ugly head without notice, rendering each of us catatonic, weeping, or raging, depending on the day and the direction of wind. We are working through it all together though. And, thankfully, we haven't all broken down at the exact same time, so there is always someone stronger to help us through.
TRex has been mostly silent, but he is always thinking about his sister. He is concentrating on the practical aspects. For instance, this morning, we discussed how little DQ is and she asked if she would be taller than me when she grew up. TRex responded "you won't live 10 years DQ, so you'll never be taller than mommy." How am I supposed to respond to that? She probably won't live 10 years, but I don't want her to give up as if it is inevitable.
Two weeks ago, as we sat at dinner eating homemade, gluten free corn dogs, TRex declared that when he was an adult he was going to the zoo and eating real corn dogs because DQ wouldn't be with him.
And around that same time, he let us know he was discussing DQ's prognosis with his classmate. I can just imagine the surprise on the other first grader's mom's face if he brought it up to her! It is too bad I know only one other mom at the new school, so I couldn't warn her in advance.
DQ on the other hand, is terribly worried about being alone after she dies. She is afraid we will forget her and will no longer love her. (Of course, we let her know our love will never end, even at death.)
The Mad Scientist remains the solid, unwavering man most of the time, but does allow himself moments where reality sets in.
Me . . . I don't know. I've been angry at times. I've been very tired, but I don't think that is depression, but more closely related to inadvertently ingested gluten. Mostly, I'm not sure what to do with myself. How do I just sit back and let heart disease steal my baby? I'm not sure how to not fight.
I've never been a good sleeper. In fact, I am the biggest loser of sleep. It would take me hours to fall asleep even as a child. I had no idea that people actually fell asleep within minutes of laying down. I simply assumed it took hours for everyone until I moved in with the Mad Scientist. He even used to try to teach me how to go to sleep. It never worked. I could never turn my brain off. Laying down was usually the first point in the day that I had just to my thoughts, so I would think. I couldn't stop myself and it would keep me awake.
Lately though, I'm not sleeping, but this type of not sleeping is different. I stay up late, despite being desperately tired. I just can't get myself to go to bed. I tell myself I'm too tired to climb the stairs. But that's not it really. I sit and watch brainless television or play ridiculous games until my eye lids are so heavy they can't possible stay open. And then, I climb the stairs and fall into bed.
Last night was even more ridiculous than normal. I had only about three hours of sleep the night before because DQ had been up off and on coughing (she has bronchitis). All I wanted to do for the entire day yesterday was take a nap, but I couldn't. There was too much to do. The Mad Scientist and I ate dinner around 8:30 as our norm. At 10:00 p.m., he went to bed. Despite having almost fallen asleep on the couch watching tv, I stayed up. It hit 11:00 p.m. and I still couldn't force myself to go to bed. Finally, at midnight, I got up and went to bed, thinking the only way my eye lids could stay open was if I used toothpicks. I could barely get myself up the stairs. After kissing TRex and DQ, I laid down and fell asleep immediately.
I was so angry with myself this morning--blaming my exhaustion on staying up playing Candy Crush Saga and Ruzzle. When I dropped TRex off at school, all I could think about was "how will I make it through the day?" When we walked into the building, one of the dads asked where DQ was that morning. I explained that she was home sick with her daddy. The dad responded "I hope she gets better soon." and went on his way.
As we made our way to the cafeteria where TRex attends the before school program, he asked me when DQ would get better. I replied "her bronchitis should clear up in a week or two." He insisted that I go further, asking me "But mommy, when will she get all better?" Of course, I had to tell him she wouldn't. He was sad and clung to me tight as I said good-bye. He didn't want me to go.
The woman in charge of the before school program asked if TRex was alright. I told her no, but he would be. I had to explain further since I wanted him to feel safe when I had left the building. In my tired state, I told her that TRex wanted to know when his sister was going to get better, but she's dieing and there is nothing we can do. I sobbed in the middle of the elementary school cafeteria, all the while trying to hide it from TRex.
As I drove away, instead of listening to the news, I was left alone with my thoughts. "How could I say DQ was dieing? What made me cry in the middle of the cafeteria? Why can't I keep my faculties in check?" I screamed at myself: "THIS ISN'T ME!!"
I then started to bargain with myself. "If only you weren't so tired, you would have held it together. If you hadn't stayed up late watching stupid tv, you would NOT HAVE CRIED IN THE CAFETERIA!"
In yelling at myself though, I realized none of it is mindless games and late night tv. I don't want to think about my baby possibly dieing. I didn't want to do it in the cafeteria and I don't want to do it at night. I don't want to think about it! But late at night, unless I'm too exhausted to think, I do think about it. I can't help but think about my sweet, sleeping children, happily dreaming in their beds and how reality is hurting them. When I don't pass out from exhaustion, I can't help but think about DQ's upcoming Pinkalicous birthday party and how this might be her last birthday. My mind won't let me escape the worry over how to help TRex and DQ cope.
But, if I stay up way too late, doing nothing but occupying time--doing the trivial and meaningless--my brain will focus on something other than my thoughts and feelings. If I force myself to stay awake doing something, anything until I'm certain I will fall asleep immediately, I won't have to think about what I don't want to think about.
So, I'm exhausted due to lack of sleep. I have many nightmares when I do sleep. And, in the light of the day, I'm not emotionally prepared to deal with questions or things that come up because I won't let myself ever think about my feelings about DQ's prognosis.
But now I know and I can begin to work toward a healthier way to deal with it all.
I heard the term "Dragon Mom" for the first time almost a year and a half ago when I read a poignant op-ed in the New York Times by Emily Rapp. A Dragon Mom is quite the opposite of a Tiger Mom; she is the mom to a child who will die young and she knows it. There is no stopping the inevitable, so parenting becomes more about sharing love, smiles, and now, rather than creating building blocks for long-term success.
But, I clearly remember writing that blog post and thinking "should I add in my thoughts on where I fit as a Dragon Mom?" The problem was that I felt an affinity to what the Dragon Mom was saying and feeling, but I still had plans for the Dancing Queen. I was still holding out hope that DQ would have a future. I felt conflicted at that time about not wanting to be in either world. In the end, I only wrote about not being a Tiger Mom. I took the easy way out by ignoring the giant elephant in the room.
I realize now that didn't write about Dragon Moms then because I was protecting myself. I didn't want to admit out loud that part of me associated very closely with being a Dragon Mom. I mean, how could I think my daughter won't make it to adulthood?!? How could I give up on my sweet baby? How could I not fight with every ounce to get her to adulthood? Wasn't I told all of the time how far medicine has come!?! Isn't my job to do everything in my power to keep her alive into adulthood!!! If I admitted that part of me felt like a Dragon Mom, wasn't I saying that I didn't believe my daughter could ever grow up?!?
And now we've been told that the Dancing Queen will not make it to adulthood. She won't grow up.
Does that mean I should become a full-on Dragon Mom? How do I know what to do? None of the doctors can tell me what to expect. Does she have a year? Two? Five? Nobody knows how quickly she will decline. All they know is she will decline and that she won't live to be an adult. The Dancing Queen still has to be around other people. She will still go to school. I can't let her do whatever she wants and become a brat. It is hard enough on her now thinking that no kids want to play with her because she can't keep up. And I can't very well let her eat whatever she wants for dinner either--that can cause her to decline more quickly and be in frequent pain.
How can I help her enjoy life as much as possible and live every moment to the fullest while still letting her be part of society? Where is the proper middle ground? How do I know what is best? Where's my self-help book--Raising Your Terminally Ill Pre-Schooler?
I walked into the garage Tuesday morning and TRex and the Dancing Queen were fighting. DQ insisted the Mickey was going to die on Wednesday. His heart was sick and the doctors had nothing more they could do, so Mickey was going to die. DQ was devastated. TRex was fighting with her, telling her "NO! Mickey is not going to die. The doctors keep researching and they are going to find a cure. You're wrong DQ. You can't be sad. Mickey will not die tomorrow!"
This morning, I had the following conversation with DQ:
Mommy, I'm sad. People have been hurting my feelings and I feel sad.
"What have people done, Dancing Queen?"
They hurt my feelings, Mommy.
"How did they hurt your feelings?"
They said I'm going to die. And not die as adult like everybody else. They said I'm going to die as a kid.
"Who said that DQ?"
I don't know, Mommy, but it hurt my feelings. I'm very sad. I don't want to die.
How can I explain life and death to an almost 5 year old and a 6.5 year old? Why should I have to help my daughter understand when the doctors tell us that they are going to do nothing more to help her feel better; that they're not going to fix her heart; that they don't know what to do?
Monday night, that is exactly what we were told. DQ's heart will continue to go into worse heart failure and the doctors do not know how to make it better. They don't know how to save her. They know she won't grow to be an adult.
TRex was with me when I learned this news. He heard it all. We had to explain to the kids before we could comprehend everything. Why should I ever have to explain this?!?
It seems that I only come back to this blog these days when life is too hard, too messy, too much. I think that is okay. I created this outlet because too many people judged my feelings and my choices when I posted to the Dancing Queen's carepage. I wasn't allowed to worry. I wasn't allowed to question "what if". I wasn't allowed to worry about other children dieing. All because it made friends and family uncomfortable with the thought that the Dancing Queen could also die. I was told that I shouldn't put my energy into strangers I've met on the internet because it only made me sad and introspective. But, the thing is none of those same friends and family have any true idea of what I go through. And when I tried to open up, I was shot down and told "don't worry." Who are you to tell me not to worry? Are you responsible for trying to find an answer? Have the doctors told you they can't do anything? Have you sat in the room with a surgeon minutes before your daughter was going to have her third open heart surgery to be told they would NEVER be able to fix her main problem?
And now, years later, the Dancing Queen appears so well that when I say I'm concerned that the doctors won't be able to help her, I get the same thing--it's no big deal; she looks great! That's all fine and good, but I watched her today in swimming class. She isn't strong enough to lift herself off the side of the pool to slide into the water. She tired from walking the 15 feet of the pool, so much so I thought she might collapse in the middle. She can't keep up, no matter how hard she tries. So, yes, she looks good, but you don't know what you're looking at!
For the past several weeks, we have been in the process of getting more information as to why I've seen DQ decline over this last year. The cardiologists found a significant problem. They told us they could fix it. Then they said they can't. Now they are saying they might be able to, but won't tell us how and whether it will require another open heart surgery. Or we just might have to let it be, which will only make things worse. So much uncertainty, but she looks good. Heart disease is a silent killer! You can't see it lurking beneathe the surface, but you pretend all is fine. It's not you who has to look for minute differences. You're not responsible for keeping her alive!
You're not the one who has to pry her little body off of you when you drop her off at school in the morning because she doesn't want to stay where the other kids get to go outside and run and she can't. You don't have to remind her that the cold air makes it difficult for her to breathe and that is why she stays in. But, she looks so good.
And you've never had to explain to a 4 year old that it wasn't likely to get better. You didn't answer the questions: "Mommy, when I'm a mommy, will I still be sick?"; "When I'm a mommy, will I still not be able to play outside?" Did you have to explain to an almost 5 year old that her heart and lungs were the best they would ever be, so when she was a mommy, it would probably still hurt to be in the cold. Did you grasp for some silver-lining for her; promising that as a mommy, she'd be able to make her own decisions and could go outside if she wanted. And all the while, you begged yourself not to cry because the likelihood she will ever be a mommy is so very slim.
I know she looks good to you. And I know she is much healthier than she was at 2.5 years old, but she not quite 5 and is doing worse than at 3.5. Instead of getting stronger, she is weakening. Instead of being able to walk farther, she is traveling less. Don't let the smile fool you and don't discount my genuine worry. You have no idea because you won't look past the surface.
I was sitting at my computer, losing myself in a little Pinterest before dinner on New Year's Eve. The Dancing Queen walked in, Mickey Mouse in her arms. She had the saddest look on her face.
"Mommy, Mickey is very sick. He may die. He needs to go to the hospital."
I asked her, "Has he gone to your clinic for a checkup, yet?"
"No, mommy. He is too sick. He must go to the hospital. Will you make it?"
I got up and went directly to the basement to build the hospital. It had been waiting since Friday night when DQ got it as a gift from her aunt and uncle (the Editor and Car Guy) and I had to help save my grandmouse.
As I popped out cardboard holes, cut doors and windows, and folded tabs, DQ and TRex discussed the seriousness of Mickey's situation. He needed a cardiac MRI at midnight (it was New Year's Eve remember). Mickey was very concerned about the procedure, but DQ consoled him:
"Mickey, I know you are scared, but mommy is here. I'll have to leave you when you go back with the doctors, but you need this. You are going to die if you don't have your MRI. The doctors will take good care of you until mommy can get back."
I asked DQ why she thought Mickey would die if he didn't have the MRI. She said "Mommy, Mickey's just like me!"
"But, DQ, you're not having an MRI because someone thinks you are going to die. You're having that done so the doctors can get better pictures."
Very seriously, she turned to me and said "Mommy, when you have an MRI, they put you to sleep. Sometimes, when you go to sleep, you don't wake up."
We discussed how scared she was to have an MRI on Friday. I tried to help calm her nerves--tell her it is just like an echo cardiogram (which she thinks is fun), except she would be asleep. I told her that the Mad Scientist and I would be with her, we'd bring Mickey and Lamby, her pacifier, and her computer full of movies. She seemed to be okay, but then TRex said it was time for her to go to the waiting room as Mickey was going back to the MRI.
DQ held her baby close and told him that she loved him. She promised he wouldn't be alone--that the doctors and nurses would take good care of him while she was waiting for him and as soon as she could, she'd be with him again. She let him know it was okay to cry if he needed to and that she always loved him.
Luckily, the Mad Scientist saved me at that point by requesting that I help with dinner. Otherwise, I would have had other things to explain.
I don't know whether to be sad or happy. I mean, I know I am happy that DQ seemingly understood what I was telling her, but so very sad to know she has to understand at 4.5.
Thankfully, today, I've been informed that "Mickey's heart is good. . . . Every day his heart bothers him, but today Mickey's heart is good."
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.
