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.

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?

"Inclusion"

Since the Dancing Queen was very little, she hasn't quite belonged.  I wrote here years ago how she was treated like a doll by the bigger preschoolers (many younger than her, but bigger).  The practice has continued through the years, but the divide by DQ and her agemates continues to grow.  She has friends in her class, but there are definitely areas where she lags behind and it makes her seem so much younger.

DQ reads and writes way better than TRex did at the end of first grade, let alone the beginning where she is now.  She is doing remarkably well with academics.  It is socially where she falls terribly behind.

We've put her in dance class and girl scouts to help her interact socially with other first graders.  Unfortunately, she has to be in a special needs dance class because the "regular" class for 6 year olds will not accommodate her need to rest or slow down.  So, she is with a bunch of older kids, teens, and a smattering of little girls who are all cognitively below her and, socially, just as far behind, if not further.  This does not help, but DQ gets to dance.

Girl scouts is a bunch of girls her own age and in her class.  Unfortunately, instead of helping her belong, much of the time, DQ is simply made to feel out of place.  Girl scouts simply provides her with lots of opportunities to watch the other kids do things that she cannot do or must do in an altered fashion.  DQ has trouble with fine motor coordination as a result of her 22q deletion syndrome, so when the girls complete projects like rubberband bracelets, DQ cannot do so on her own.  When the girls simply run around and be little girls, DQ cannot join but for a minute because of her heart failure, so she is left to watch as they have fun with out her. For trips, DQ needs her wheelchair.  Any activity involving food (which activities don't involve food?) and there is not even an attempt to include DQ because it is too difficult to do gluten free.  (Don't even get me started on this--I can't send tree nuts for TRex to eat on his own, but when the class parties come and there are communal treats, they don't have to accommodate DQ because it's too hard! How much bullshit is that!!!!!!!!!!!!!!!)

So during girl scout meetings and events, DQ must watch a room full of girls just who are supposed to be doing things with her, exclude her.  DQ is left frustrated and angry. She lashes out. Who can blame her?!? But that segregates her all the more.

I use these times to help her understand that not everyone is the same. These are learning moments for her to accept her differences; to understand that she may not be able to do everything the same way, but she can still participate.  These are the same lessons DQ learns in school and everywhere else she goes.  There is not a day that goes by that we don't have to teach DQ that sometimes she will be left out.

But today, as the girl scouts chose to attend a play together at the time they are serving a lunch that DQ cannot eat (rather than a different showing that would not cause DQ to be singled out AGAIN), I wondered: When is it the time to teach the other kids to think of DQ's feelings?  When is it the time to say: this might require a little more thought, but we'll bring gluten free snacks so that everyone can belong?  Why should my daughter be the only one who has to change or has to learn?  Isn't one of the main purposes of inclusion to teach the rest of the world that disabled persons are people too and that they matter? DQ works harder than the rest of kids to simply breathe! Why can't they eat freaking popcorn for snack ONCE! When the kids are running around for ten minutes like chickens with their heads cut off (and I'm not supposed to be in the room), can't the leaders suggest they play a game that everyone can do? And if I'm not allowed to assist, are you going to make sure that the activities are able to be performed by all of the girls or should the girl scouts change their requirements to specifically exclude children with fine motor delays?!?!?

I guess I should be grateful that the girl scouts allow DQ to tag along and pretend like she belongs since the dance studio won't even do that.  But I'm not grateful.  I'm angry and I'm sad. I would pull her out if she didn't ask to stay.  Unfortunately, she doesn't know any better. Nobody outside of our family has treated her like a regular kid.  She doesn't know what it's like to have the girls actually play with her instead of at her or using her as the toy.  This is the only way she has ever belonged and it feels normal to her. But, for me, I feel like they are trying to force her out. They don't want to change, so they will make it so uncomfortable for her that eventually, she'll give up and they won't have to think about the disabled child. And frankly, I'm so exhausted that I can't fight this fight. They don't want to accommodate, so I'll keep teaching DQ. She will be a good person. As for all of those girls whose moms think they are so great because they treat DQ like a doll, those girls are losing the opportunity for real growth. It is a shame because if they were just guided, they'd do it easily.  But their parents are too blind to guide and I have too many battles on too many fronts to deal with this one.

Somebody Else

"Mommy, I don't want to be DQ forever.  I want to be somebody else." 

Why would you want to be somebody else, sweety?

"I have a lot of pain."

Everybody has pain, DQ.  If you were someone else, you'd still have pains sometimes.

"But, mommy, most people don't have pain like I have pain.  I always hurt."

I looked across the kitchen at the hospice nurse, there for her bi-weekly checkup. We both gave knowing looks.  DQ was right.  Most people don't have pain like her.

I took a deep breath and  gathered myself.

But if you weren't DQ, you wouldn't love music in the same way, you wouldn't be able to sing as well.  If you weren't DQ, you would lose all of the wonderful things about you that make you special.  DQ is an amazing, wonderful little girl with so much light and life.  If you weren't DQ, you would lose that.

She just stood there, crumpled and sad.

If you weren't DQ, we wouldn't have the smile that lights up the entire room.  And you probably wouldn't love pink and ice cream as much.  If you weren't DQ, you wouldn't be able to read to me like you do.

I know it seems like it would be nice to be somebody else because you don't want the pain any more.  I don't want you to be in pain either. But I don't want to lose you and all of the wonderful qualities that you bring to life. I love my strong, sweet, funny, amazing Dancing Queen and I wouldn't want her to be anyone else.

Her shoulders weren't quite so stooped any longer, but the sadness still enveloped her.

The pain was too much today.

No Voice

I have had nothing to say for a very long time.

At least, that is the way it has felt.

I've had no desire to blog or write in any way.  I've been hiding from myself again.

These last couple of months have been some of the hardest I've lived through. (And, so you don't worry, the Dancing Queen has not been declining.  In fact, she had a cardiology appointment and she has remained the same--no better, no worse.)

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.

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.

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.

Not Happy

There are deep, dark pillows encircling her eyes.  She finds it hard to wake each morning.  She is tiring more easily.  Yet, she has finally "kicked" the cold that has held on for months now.

The Dancing Queen looks so sick to me.  And yet, I'm supposed to be happy with how she is doing now.

I'm not happy though.  I want her to be fixed! I want her to not worry about fatiguing from swinging 10 minutes by herself on the big girl swing. I want her to look like a little girl instead of a tired old woman in a teeny, tiny body.

This sucks! It just sucks to know my daughter is steadily declining, so slowly that nobody else notices.  They make me feel as if I am wrong to notice the little things.  She is not improving.

She saw her pulmonologist yesterday.  He was happy to see her smile; to see her play; to know the joy that is my beautiful daughter.  But did he do anything to help her stop desatting as she sleeps? Did he give us a plan to make her healthy?

Could he?!?

No!

Yes, we've changed a med and it may help her breathe easier, but nothing was changed.  Not really.  Unless she gets worse, nothing will change.

And I'm not happy about that.

It's Not Her Fault

I can handle it most of the time. I don't break down. Really. I stay calm.

But, I always hold my breath when I have to ask questions like "will it be a problem if my daughter needs to wear a diaper at nap time?" Upon hearing the answer "we're not licensed for that", I try so hard to hold back the tears and not let the person on the other end know they cut me to the core.  When I explain that she needs diapers because she sleeps so hard due to the shear exhaustion of standing upright and being a kid with so many physical hurdles to overcome, they sympathize. But . . .

. . . we're not licensed for that.

Potty training has been an ongoing process with the Dancing Queen for years. She wants to be big. She wants to use the potty, but it is just so hard for her. I've talked a lot about DQ's eating problems. Well, those are nothing compared to her potty problems (and the potty problems most likely add to the eating issues).

DQ wears a diaper to bed at night. She hates it. She wakes up every morning and says "Mommy, I think my diaper is dry today. Can I wear underwear to bed tomorrow?" And everyday, I have to tell her "No, honey. The diaper is wet. You take lasix right before bed. It is really hard to hold it all night when you take diuretics." And she sleeps so hard, she never even realizes she pees.  I try to let her know that it's okay; we all understand. But, she gets sad every morning nonetheless.

And while DQ wears underwear when awake full time these days, she still has accidents. There have been more weeks this summer that DQ hasn't been permitted to swim on swim day than there has been weeks she can simply because her body doesn't work in the way it should.  DQ wasn't born with the muscles that all of the rest of us have. She had surgery as a 3 month old to help, but it's not the same. She faces pain ever single day. And recently, she started to face ridicule as well.

And because using the potty has caused so much torment in her little life, DQ revolts against it, making the process all the worse. She fights us constantly as we remind her to use the potty. "DQ, you took lasix an hour ago, you need to use the potty." And she screams "I DON'T HAVE TO! I JUST WENT!" But, if she doesn't go just in case, there will be an accident. It's not her fault. You try taking the highest dosage of lasix a day for your weight and see how quickly it creeps up on you.  We have to remind DQ every 15 minutes to use the potty after lasix. But all she sees is that we remind her and not her brother and not the other kids at school. Why is she the one singled out?

And don't even get me started on the other medicines she has to take and the harsh reality that comes with them. My poor baby feels like she is doing something wrong because the medicines she desperately needs to help ease the pain, present huge obstacles to overcome for most people, let alone someone with the equipment the medicine was designed to work for. DQ wants to be big. She knows what she has to do, but her body betrays her.

Why can't people understand?!? Why don't they help her? Why do I get so angry at times? IT'S NOT HER FAULT!

And, yes, there are times, she does it on purpose. I don't blame her for that either (at least not at this moment). If you were constantly being punished for doing something you couldn't control, wouldn't you do it on purpose every once in a while so that at least there was a reason to be punished?

Am I Bad?

Is it wrong that in looking for a new home to buy, our forever home, I am consciously considering how the home will work when the Dancing Queen's health deteriorates? Is there a bedroom on the first floor for when she can't climb the stairs and is too big to carry (after all, she is 29 pounds now!)?

And should I be condemned because while she is busy planning how her new bedroom will look (pink and purple with butterflies), in the back of my mind, I wonder how much medical equipment will we have to fit? What would you think of me if you knew that I worry if we have steam heat that could pose a problem for an oxygen concentrator?

I love the look of hardwood floors in a home. But, now, as I look for our new home, I see hardwood floors as an added bonus because they will help keep down infections should the doctors decide DQ may qualify for a transplant (which is really the only option she will be left with someday, should someone decide she is deserving enough). Does that make me bad?

The Dancing Queen is doing pretty darn well these days. Since we set a new baseline, DQ is not showing signs of worsening. I feel like we are living a "normal" life, even if it is just normal for us. But I know we are on borrowed time (or is it just time?). Will it be tomorrow? A year from tomorrow? Five years?  Twenty? I'm planning for forever. And in the back of my mind, I'm haunted that we're going to build this new home and it will be home from which we tell our daughter goodbye. I can't help it. I want to believe that DQ will be here for much longer than me, but I simply can't believe it. I want to ignore that DQ has ever been sick at all, but that is not possible. I want to embrace that is doing better than ever before, but I know that will not always be the case.

I'm not planning on bringing in the medical bed when we move. But I also can't ignore the fact that we may have to do that in the future. And having these conflicting feelings is really hard. I don't want to plan for a future where my daughter is sick, but I nobody has EVER promised me that won't be her future. They've never even told me it is likely that it won't be her future (like is told to most of the parents of children with tetralogy of fallot). And believe me, I've asked.

Yet, I feel guilty thinking about the practicalities of a DQ's precarious future while buying a new house.

And now that I've said it, hopefully, I can leave the guilt behind?

Searching

From time to time, I look at the traffic sources to my blog to see how people stumble upon me. The most common hit is people looking for Jake and the Neverland Pirates stuff. I'm sure coming to this blog is a huge let down for those people desperate to find somebody with the inside track into gear that is desired by all kids between the ages of 3 and 7.  I do promise that should I find Jake toys, I will post about them here.  After all, TRex has decided that this year's birthday theme will be pirates, complete with treasure hunts, maps, and adventure! Just wait for the Pinterest board on that one. If you thought my butterfly board was amazing,  you'll love my pirate board! (And yes, when I started writing this post, the pirate board had not been started, but I thought about it and had to get going. There is less than 4 months until the party!)

Back from my pirate break, another common search that lands on my fair blog is searching for images of kids with 22q deletion syndrome/DiGeorge's syndrome. I truly hope that whomever stumbles upon my blog with that search finds some comfort when they see photographs of the Dancing Queen. I remember clearly searching for images before my girl was born. Since I had never heard the terms velo cardio facial syndrome,  DiGeorge's syndrome, 22q11.2, or Catch 22, I wanted to know what someone looked like. Is it obvious? Will my baby face ridicule simply because of her looks? The thought terrified me when I was pregnant, so much so I was more concerned about the 22q than I was about DQ's heart defects. Luckily, the 22q hasn't thrown us that many curve balls other than the cardiac issues (even if DQ has more "symptoms" than most people I know with the deletion).  And I hope when people see my sweet girl they see the beauty in her and it helps them come to terms with whatever they are dealing with.

Today though, I had a new search land on my blog. Someone searched for images of post op for pulmonary atresia. That search caught me off guard. In the past, people had landed here through searching for images of babies on a ventilator, but never specifically looking for images related to my daughter's specific CHD. I couldn't remember what post would hit on that, so I looked and I read my story from last August. And I cried. I cried a lot.

That post was so clear. It was full of facts. It stated life as it was.

Funny thing though. My emotional side had pushed aside a lot of those facts. I had forgotten emotionally that we were never promised a healthy child. I had forgotten emotionally that the doctors told me point blank on the day of DQ's last open heart surgery that they couldn't fix everything that needed fixing. I had forgotten emotionally that last summer was the best her heart was ever going to be.

I knew all of this intellectually. I've said it over and over and over again. Repeated like a mantra, even here. Yet, reading it all again today, it washed over me like a blanket in the night, suffocating me. (I'm drowning, MS, I'm drowning.)

But when my cry was done, I was ready to move on . . . emotionally.

The Dancing Queen is doing remarkably well for her. She is happy. She is healthier than she has ever been thanks to her army. Her cardiologists are not overly concerned about her swelling. And we are living life. Of course there is t-ball and ballet for DQ. Summer is coming and she is looking forward to the zoo (which we are doing this weekend for the Walk for Wishes), playgrounds, the beach, and a family vacation on the lake. I am ready to enjoy it all.

I hope the person who found my blog searching for post op images can enjoy life as well. A diagnosis of pulmonary atresia is scary to say the least. I have too many friends who have said goodbye to their children from this dreadful disease. I have friends saying goodbye right now. But, I also have friends with children thriving and doing remarkably well with pulmonary atresia. Life is good and these kids know how to enjoy it!

A Glimpse

Below are some to the questions and things I hear in a typical week from the Dancing Queen. A sorta glimpse into what it means to have an almost 4 year old with complex heart and lung disease and 22q11.2 deletion syndrome.

Mommy, we can't walk to the candy store. The cold air makes me cough and my chest hurts.

Translation: Between the high pulmonary pressures and asthma, when the Dancing Queen is out in the cold for more than a couple of minutes, her lungs can't handle it.

Mommy, can I see videos of myself as a baby in the hospital?

DQ always wants to look at videos and pictures of herself as a baby, in the hospital.  She always points out when she sees baby DQ with a pacifier. This is one of the hardest things she asks the Mad Scientist and I to do. The pictures are painful reminders.

Mommy, I get my army, it's just one little poke. It doesn't hurt a lot, only a little bit.

 Translation: Her weekly Hizentra infusions that are done via subQ button (small needle that only goes into the skin). DQ gets donated human immunoglobulin once a week in her belly or leg. The needle stays in for 2 to 2.5 hours, but it only takes one poke.While DQ says it doesn't hurt a lot, when it comes time to give the "one little poke" she fights us.

Mommy, Daddy always says "a double shot of enalapril."

Mommy, I need my lasix to help me pee. I need my aspirin to help my heart.

Translation: DQ takes about 10 medications a day. At breakfast every morning as I give DQ her morning meds, she tells me these things.  My husband always uses two 1mL syringes to give enalapril and I use one 6 mL syringe; hence double shot of enalapril.

Mommy, I need to eat, sleep, play, and take my medicines so I can grow big, big, big.

 For some reason, this is DQ's normal topic of conversation on the way to dropping TRex off at latchkey in the morning.

Mommy, I'm little because I don't eat. If I eat, I'll be big like TRex.

Translation: DQ rarely eats as much as she should. It is a constant struggle and quite the opposite of her brother.

Mommy, Mickey is sick. I'm taking him to the hospital. His sats are 35. He is almost dead. He'll be better in a week. 

 Translation:  DQ and TRex playing with their animals. Mickey Mouse was sick. It doesn't matter the character, but someone is always sick, they always go to the hospital, they always get shots or surgery.

Mommy, my army kills the bugs, but I still have to take yucky medicine. That's not like my yummy medicines. 

Translation: Yucky medicine=antibiotics; yummy medicines=enalapril, lasix, aspirin, calcium carbonate, calcitriol, and prevacid.

Mommy, why do I have heart disease?

 When we wore red for heart disease, DQ wanted to know why she had heart disease. I had to explain that she is missing a piece of chromosome, so her body didn't know how to build her heart properly. That wasn't a satisfactory answer, so she asked me over and over and over again. Finally, I told her I don't know. She wasn't happy with that, but accepted it.

Scary Noises

Saturday night, around 10:00 pm, we heard it--the sound that has the ability to stop both the Mad Scientist and I dead in our tracks. I looked at him and I could see the fear quickly envelop his entire being. The tension and stress in the air could be cut with a knife.

Are you wondering what noise could cause such a reaction? Was it the sound of breaking glass or a crackling fire? Was it the sound of sirens blaring or an animal knocking something over outside?

No, the noise was a simple cough, heard over the baby monitor.

We are not overly protective parents by any means. We do not chase after our children with clorox wipes. And, as any regular readers know, both kids attend school and day care, chock full of germy kids with questionable hygiene practices (they are kids after all).


Yet, we totally freak out when we hear the Dancing Queen cough.

We didn't start out this way.  If she coughed, she coughed. We treated it like we treat TRex's coughs--a simple cold that would lead to runny noses, but would go away in a couple of days. No big whoop. But, we've become jaded over time. Or are we more realistic?

Either way, we know that all too quickly a cough can turn into something more. We've seen a fever take her from a normal kid to almost intubated in a matter of hours. And 10 day stints at the hospital usually start with just a cough.  Even without hospitalization, with each bug, DQ takes one more antibiotic and inches herself closer to the day none of them work any longer.  (I counted, since this day last year, DQ has had 27 courses of antibiotics, well over 200 days.)

I'm happy to say that Sunday, she was fine, save some blood in her ear (normal for her).

This morning, she did wake up coughing and complaining of chest pains, so she stayed home from school and saw the doc. It "appears" as though we caught the bug quickly. Hopefully, course 28 of antibiotics for the year will take care of it.  Until the bug is gone though, the Mad Scientist sit here waiting for the other shoe to drop. We try not to worry, but we've been burnt too many times before.

I Need You to Protect MY Babies

One of the things I fear most as the mom of child with DiGeorge's Syndrome is the unimmunized healthy child. The child whose parents believed a playboy bunny rather than medical science. Or the parents who think it is fine for their child to get major illnesses, not taking into consideration that their child's illness is another child's death.

I don't understand it. Diseases like measles and chicken pox have killed untold numbers of people through the ages. And here we are today, with the means to eradicate these diseases, saving countless lives, and people choose to keep the diseases around! Why?!? Because they had chicken pox as a kid and were fine. That is BS. Pure and simple, self-centered BS! Because some "scientist" published a paper that said vaccines cause autism; a paper that has been criticized, debunked, retracted, and proven to be falsified. Really? What part of fraudulent and debunked do they not understand? What part of the dude has lost his right to practice medicine do these people NOT understand?

Yes, I am angry. Very, very angry. My daughter has been hospitalized numerous times for things you and I would call a bad cold. I would do anything for the MMR or chicken pox vaccine to protect her. But her immunologist has declared it too dangerous because those vaccines are made with live virus. If my baby with her weak immune system had either vaccine, she could easily contract the diseases. And for someone like her, with such a fragile medical condition, those diseases could be deadly. So, no she is not allowed to be vaccinated. Neither is my son because the small amount of virus in his vaccine could infect the Dancing Queen.

I was told not to worry about my kids not being vaccinated because everyone else is vaccinated. But that is a pipe dream based upon sound science and not upon tabloid rumors which, surprisingly, control many parenting decisions. While my daughter's immunologist is sure my kids wouldn't be exposed to chicken pox, measels, mumps, or rubella, he is wrong. Last spring, a child who rode the bus with the Dancing Queen came down with chicken pox. And this week, a child in TRex's school also came down with chicken pox. These children were probably contagious without showing any symptoms for 3 days prior to coming down with the pox. We lucked out last spring because DQ was in the hospital when the child got sick. I guess we'll see next week if TRex was lucky enough to escape the illness. Unfortunately, we will not know if he was lucky until it is too late.

The Dancing Queen is not the only child with immune issues. There are many children with the 22q11 deletion or other congenital abnormalities that cause immune system deficiencies. There are more children who have had cancer and their treatments render them vulnerable. And every child who has had an organ transplant is on anti-rejection meds that weaken their immune system.

Please, have your children vaccinated. Help save lives!

How would you feel if your decision not to vaccinate lead to the unthinkable?

It is exhausting

Yesterday, we celebrated TRex's birthday. As I alluded in my last post, I was very busy all last week with work and preparing for that party. I promise, I will post pictures and show what fun was had. But that will have to wait until later.  Today, I'm exhausted.

I'd like to say I'm physically exhausted from my crazy busy week at work, lots of extra time spent on putting the birthday party together, little to no sleep, and the zillion extra obstacles sent our way (like a dead battery when all we wanted to do was get the melting down children home or arriving home find trees on top of houses and people looking around lost--remnants of a huge storm that luckily did little damage to us). I'd like to say that is what has me exhausted. It did. Last night. I couldn't keep my eyes open to eat dinner. I was bone tired, but slept well for the most part.

None of that plays a role in this exhaustion. Today, I'm mentally exhausted. Today, is one of those days I want to roll into a ball in the corner and cry.

Yesterday morning, on the way to TRex's birthday party with Ma, the Dancing Queen vomited in the car. We didn't think much of it because we all thought it was probably excitement for the party. It had been built up huge all summer. And DQ did have a slightly runny nose while we were there, but we were swimming. That happens.  And she seemed totally fine otherwise. She ate (that's huge), she played, she had so much fun.

We started to get concerned near bed time, but DQ was fine. We checked her ears. They were fine. She slept fine. But, this morning, DQ had a runny nose. We went to breakfast at our favorite place because our house was empty of food. DQ took her first sip of juice and we were done. I tried to run out of the restaurant with her, but we didn't quite make it. Maybe 10 feet from the door, all of the mucus came up and out over my shoulder, down my back, and a little on her. We ran into the rain, DQ crying and upset.

An hour and a half later, we were home, playing and I went to move DQ's hair from her face. I couldn't. Her ear drum had exploded again. There was blood and gunk streaming down her cheek and into her hair where this morning it had been fine.

The Dancing Queen has an ear infection. Again.

Perhaps this seems tiny to you dear readers, but to us, this is just one more in the a long line of ear infections. DQ saw her ENT not but 6 days ago. The last ear infection from a couple of weeks ago was so bad that it burst a hole in her ear drum and knocked her third set of tubes out. The ENT ordered us to keep her ears healthy until he saw her again in 6 weeks when he would planto put the 4th set of tubes in in less than 2 years. I guess we failed there.

We have lived this same scenario: the vomiting, the ruptured ear, the pain, the crying, so many times. I no longer have count.  The Dancing Queen has been on antibiotics continuously since October 2010 (and before then, fairly regularly as well, but I use her last open hear surgery as the cut off since she was healthy then). For a couple of months, there was talk of putting her on IVIG (donated immunoglobins to up her immune system), but her immunologist changed his mind and didn't think it would help. Now, DQ just goes through course after course after course of antibiotics. And her left ear drum continuously gets damaged. And my poor baby cries because of the pain and she cries because of the things her illnesses deny her.

Today, she cried her heart out because she wanted to eat at our favorite restaurant (even though she wouldn't have eaten a thing). We had promised. We were there. We had to leave. And DQ knows why. She feels like she is being punished for being sick. We try so hard to not let her feel that way, to let her know we are not angry and that leaving is not a punishment, that we will go back when she is feeling better, but she is 3 and doesn't understand. My heart breaks a little more with each of these instances because as she gets older, she understands more and more.

I've watched my daughter endure so much pain, so much suffering, so many tests, procedures, and surgeries. I've held her as she vomited continuously because her digestive system was too slow because of heart failure. I've held her down so she could be poked and prodded. I've signed off on slicing her open and spreading her ribs. I've stood there looking at her scared eyes as dozens of doctors and nurses have worked over her body. All of that was so very hard to do, but each instance was finite.

With these ears and this pain and suffering, it is continuous cycle. It is always there. How much longer can we last? How much more can a little girl take?

A week ago, I found the notes that were taken during the multidisciplinary conference right after we had been given DQ's initial diagnoses. In those notes, the geneticist wrote that hearing loss is common for people with DiGeorge Syndrome due to boney anomalies in the ear or frequent infection.  Frequent ear infection. Is hearing loss next?

When will the Dancing Queen catch a break? Can't we have one month without pain? Can't we go three weeks without antibiotics? Can't she feel good for a moment?

Breaking Down Preconceptions

Before I start my post, let's be clear about one thing: I did everything that I was supposed to do. I consulted a doctor before I started to attempt to conceive. I was on pre-natal vitamins before. I stopped drinking alcohol, cut out caffeine, no tuna, no soft cheeses, no lunch meat all before conceiving. I never smoked nor took drugs nor medications not okayed by my doctors. I even left the room if someone lit up. I started all of this before conceiving. My primary care doctor told me if I was planning to have a baby, I should start acting like I was pregnant for the two months preceding our first attempts. So that is what I did. Yet, my daughter was born with multiple, complex congenital heart defects.

As we've discussed before, I sometimes feel responsible for the Dancing Queen's conditions. It is highly likely that her myriad of problems stems from her micro-deletion of chromosome 22q11.2. (There is an extraordinarily high correlation between conal truncal heart defects like DQ's and the deletion, but there has been no direct connection showing definitively that the 22q deletion causes heart defects.)  But, most CHDers don't know why they have defects.

That bears repeating: There is no explanation (yet) as to why most CHDs occur!

And so when I learned recently that a college entrance exam study aid stated that most CHDs are caused by the mothers drinking or using drugs, I got very upset. A CHDer noticed this egregious error, wrote the publisher, and the error will be corrected. But the problem is bigger: like the origin of the misunderstanding.

Generally, people believe that only mothers who do something wrong will have children with defects. Afterall, that is why I blamed myself for so long. And that is why so many heart moms feel guilty at least for a while. This societal belief that only "bad" moms have sick babies is why CHD awareness is hindered. Until CHD is personal, nobody believes it is possible.

The head in the sand mentality has to change. CHD does not discriminate based on race, on income level, on nationality. Yes, there are things you can do that will increase the odds of your baby developing a CHD. But, even if you do everything right, there is still a 1 out of 100 chance your baby will be born with a broken heart.

What's worse is that routine screening is not yet done for CHDs in the majority of states and many children go undiagnosed until it is too late. And despite the prevalence of CHD, parents are not taught the warning signs before bringing their newborn home. This has to change.

You may wonder why I care. Afterall, my daughter was diagnosed and she is receiving care. But I feel that all babies are important. Not one should be lost because much of the medical community is living 50 years in the past where children simply died from their CHDs and it didn't matter if the CHD was detected. Today, the sooner the CHD is detected, the much greater chance of survival. There is no reason why a child with a hole in their heart should go undetected into their teen years when it is too late to fix the hole and they are suffering from other uncurable, life-threatening diseases caused by the hole. No more children should be lost because nobody looked to see if there could be a problem.

I hope you will join me in helping to change this egregious oversight. First, if you are pregnant (or know someone who is), request that the newborn have a pulse ox done before leaving the hospital. The doctors aren't necessarily going to hear any heart problem and ultrasounds can even miss that your baby only has half a heart. The pulse ox does not detect CHDs, but it is an inexpensive, non-invasive tool that should warn doctors a problem may be present and more tests need to be done (it determines the percentage of oxygen in the baby's blood and should be over 97%). A pulse ox doesn't hurt and is found in every hospital. For a baby, it looks like a bandaid, but not quite as sticky.

Second, learn the warning signs. If your baby is blue at all, demand a pulse ox. I've heard stories of nurses telling new moms that some newborns just turn blue and it is common. Your baby should not be blue! If they are blue, they are not getting enough oxygen and could have a CHD. By blue, I mean even if their lips, fingers, or toes are not pink, but purplish in shade. DQ's hands, feet, and lips were very blue when she was born and she still gets that way sometimes (like today). If your baby tires very easily while eating or sweats while eating, that could be a sign of a CHD. Rapid breathing is also a sign of CHD.

Third, write Health and Human Services Secretary Sebilius and tell her you want pulse ox mandated for all newborns. She is considering rules that would implement a pulse ox for every newborn in the country, yet doesn't believe we care enough to save babies' lives. I care! If you care too, here is a link to a letter you can customize and email to Secretary Sebilius: http://www.writesomeone.org/en/component/mtree/recommend-newborn-screening-for-critical-chd.

Finally, pass this information along. The best way to prevent the loss of these children is to educate their parents. Parents are the frontline defense for their kids. When you pass this information on, if the mother or father shuts down and doesn't want to think about it, ask them one question: What is the life of your child worth? We're trying to save lives.

*That* Lady

I was laying in bed seething. Every trick my therapist had taught me to block out the world and go to sleep was failing horribly. It was 1:45 a.m. Saturday night/Sunday morning and my neighbors, old enough to know better, self-centered enough young enough not to care, had been partying around a campfire all.night.long (as they do almost every weekend during the summer). I decided I would wait until 2:00 am and calmly go to the fence and remind them of closing time, others who had to work all day Sunday, sleeping children. I didn't want to be a total jerk. I mean some of my favorite memories revolve around campfires and nights spent with friends. But, it was almost 2:00 a.m.!

Then it happened. The neighbors got exponentially louder and the Dancing Queen began to cry. They woke up my sick daughter who needs sleep more than anything. Angry bear mama roared her head and I ran downstairs, out to the back porch and yelled at them to quiet down. There was no banter about closing time, no understanding of "I remember those times". This was me unleashing my fury over loudness (and probably a little jealousy that those days are gone for me).

But, the partiers didn't hear me. They didn't freaking hear me yelling at the top of my lungs! And so I did it, I became that lady: I threatened to call the police if they woke my sick child again. Apparently, they could make out the word "police". The fire was immediately extinguished and they went indoors or elsewhere. All was quiet.

I might have laid back in bed, thinking about the incident and lamenting my fall into "that lady" status, but instead, I walked into one of the most horrific scenes of my life and quickly forgot the careless frivolity of youth.

Let me back up a little bit.

DQ had started getting sick Friday night/Saturday morning. So far, it was just a cough and runny nose, maybe a low grade fever. I say maybe because she was out of sorts all day Saturday, crying and screaming, so of course she felt warm. But was it from her anger or from fever? We weren't sure. We were sure that the attitude was because she wasn't feeling well. Her heart rate was up, she was swollen (sign of an over-worked heart), and she was complaining of stomach pain. She took a three hour nap Saturday afternoon and still needed to be woken up from it. We feel fairly certain it is just a summer cold, but with DQ, a summer cold can lead to the hospital. Her body was obviously trying to compensate yesterday and she needed rest. Hence my sheer anger when the neighbors woke her.

The thing is, when I went back inside to check on her again, I noticed something in the dark. I looked again. DQ was sound asleep, but she was covered in blood. My baby's entire face and hands were covered in blood! I couldn't tell the origin of the blood or whether it was dry or new, or even if she continued to bleed in the dark. It seemed to be everywhere.

I ran to the Mad Scientist, made him look to be sure my tired eyes weren't playing tricks on me. They weren't! She had blood everywhere. I had the Mad Scientist pick her up to bring her to the bathroom while I ran around like a chicken with my head cut off searching for wash cloths to clean her up. My heart was racing. I was shaking. And DQ was just sleeping in her daddy's arms, looking like an angel covered in dried blood.

Yes, all of the blood was dried. There was a lot of it. It must have come from her nose. It looks like she tried to stop the bleeding with her hands and smeared it everywhere. So, it was not that big of a deal, I don't think. She lost a lot of blood, but not enough to be dangerous, I hope. I have no idea how much she swallowed. She has been having nosebleeds more frequently these days. I understand this is fairly common with DiGeorge kids and the fact that she is on an aspirin regime makes it more difficult. But, this nosebleed was definitely worse. The amount of blood was scary. Seeing my baby that way . . . Gosh, I thought someone had punched her in the face or had dropped something on her. The scene was horrific.

And all I could think about after I cleaned her up and she was back in bed, was "why hadn't she called us?" Then I remembered my idiot neighbors. DQ had probably called, but we didn't hear her over the loud party. Suddenly, I didn't care about being that lady. The reason that lady exists is because I care about more than myself. And if I have to remind a bunch of late-20 somethings that having a good time at the expense of others is . . . immature, well then I guess I'll be the grown up. My shoulders are big enough to carry "that lady" baggage.

Could it be Me?

I'm still sick. The cough has pretty much dissipated and I don't feel like I'm having a hard time breathing (although my doctor begs to differ). Friday marks the end of week 4 of this whooping cough. And today marks day 7 off of work in a row for me. You read it correctly, day 7 in a row!

Last Wednesday, I started to get really bad again and my doctor changed up the meds, so I stayed home Thursday and Friday to rest. I was petrified that I was heading straight for the hospital. Saturday, I felt great. Almost had my voice back and I felt I had turned a corner. Sunday, I felt pretty well in the morning too (except for a cough I had at the exact moment I took a huge swig of coffee--let's just say the Mad Scientist ended up sprayed in coffee and I was mortified as the entire restaurant stared at me).

We came home from breakfast and I weeded a little and planted some flower seeds. Then it hit me. I had done way too much, so I took a nap. After the 3 hour nap, my left lung felt like it was being stabbed repeatedly. I had had lung pain throughout this illness, but it had intensified so bad that I couldn't cough or breathe or let the kids hug me without a yelp. At 1:00 am Monday morning, I decided it was too much. I felt for certain I'd be in the hospital (and not uncertain calling 911 wouldn't be an option). I told the Mad Scientist he was not going to work the next day and he had to drive me to the doctor's office or the hospital. It was impossible for me to drive myself.

It turns out, I have pleurisy. The infection in my lungs (presumably whooping cough) has inflamed the membranes of my left lung, causing them to scratch against each other in a most painful way. The goal is to kill this infection finally and prevent any long-term damage to my lung membranes. I am totally feeling like the Dancing Queen these days. I am taking 10 medications at 4 different times of the day (and I am on my fourth type of antibiotic). So far, it seems to be working. My pain has diminished enough that I feel able to drive. I haven't heard any of the scratching of my lung membranes that I had been hearing all of the time for the last couple of weeks. So, that is good. I still have to rest and being in the heat and humidity is really hard on me, but I'm making it.

And all of this makes me wonder again: Could it be me? Could I be the cause of my sweet baby's horrible conditions? Do I have a micro-deletion of chromosome 22q11.2? This illness reminded me that I have the same immune deficiency as DQ. I was born with a heart murmur, but do not have any heart defects. I have the crazy, overlapping toes that she has and so many 22q kids have. I am very short (but so is everyone in my family). I had the crazy ear problems she suffers from. Is it all just a coincidence or something more?

I've played this game in my head so many times. I rationally decided years ago that it just doesn't matter. Even if I have the deletion, I didn't know about it before I was pregnant and there is nothing my diagnosis could do to help DQ. Would it just make her angry to know I did this to her? Or would it give her inspiration to know an adult can thrive? Would it just muddy the waters? Would it finally give me someone/something to blame? Would that do any of us any good? Would she hate me because of it? Would I hate myself?

And so I grapple with the question: Should I finally be tested?

22q at the Zoo

 Today was 22q at the Zoo, an international event to raise awareness of the microdeletion of chromosome 22q11.2.  People from across the globe gathered at their local zoos in support for the 22q population. We, of course, took part in honor of our Dancing Queen.

 

The microdeletion of 22q11.2 is what I regularly call on this blog as DiGeorge's Syndrome or Velo Cardio Facial Syndrome.  DQ more classicly falls into the category of DiGeorge's Syndrome because her manifestations of the 22q deletion include the heart problems, immune problems, and hypocalcimia/hypoparathyroidism.  But, all of the syndromes are really just manifestations of the 22q deletion.

Over 187 different types of manifestations have been connected to the deletion of chromosome 22q11.2 and it regularly affects the following systems: heart, pulmonary, kidneys, GI, ears, eyes, facial features, endocrine system, immune system, teeth, and palate, and frequently causes learning disabilities and psychological problems as well.  Most people, if they exhibit any symptoms, only have a dozen or so that manifest over their lives.   So far, DQ has exhibited approximately 30 of the various manifestations and she frequently sees specialists to make sure new problems are not missed.  DQ has dealt with issues in all of the areas listed above, except psychological problems and her learning disability so far (if you can call it that), was late speech.

The 22q11.2 deletion is very common--the second most common chromosomal abnormality behind Down Syndrome, but some people believe it is just as common as Down Syndrome, just not diagnosed. At least 1 of every 4,000 people are born with the 22q deletion.  Today, we met with several families living with 22q deletion at the Detroit Zoo.  It was wonderful to see them and raise awareness. We did have at least one person ask about 22q, so we did our part.

Next year, we hope the event will be bigger and reach more people.

Decisions Are Not Easy

I hate the questioning! My husband and I have thought and thought and thought about what is best to do for the Dancing Queen. We have never taken any decision lightly, yet we are constantly being questioned.

I work full-time. So does the Mad Scientist. In order to pay for our house, my student loans, food, and maintain health insurance to cover DQ, we must work. We've debated over and over and over again whether the Mad Scientist should be a stay at home dad and keep DQ shielded from the world. We decided to put her out there, to let her live her life.

My daughter has DiGeorge's Syndrome and severe, complex heart defects and lung disease and I let her to go public school. She rides a bus. She plays with other kids. We take her to the zoo, the mall, and she went to the movie theater for the first time last weekend. We let her interact with other humans. You know what, she loves it! My daughter is a people person, who loves life. And if you asked her whether going to the hospital every other month was worth playing with friends, singing songs in a group, and playing at a park, she'd say yes.

Could I keep her in a bubble? Yes. Could I prevent her from being a part of the world? Yes. Would that keep her from getting sick? Maybe. TRex still would be going to school and he'd still get sick and bring it home. Maybe I should be keeping him home as well. Even if we kept her home and away from the rest of the world that she loves, there is no guaranty she would stay with us longer. The only guaranty in that would be a less happy child.

When DQ was under lock-down mode last August through November due to prepping for surgery and recovery, she was miserable. She wanted to go to school. She wanted interaction with other children. She wanted a life outside of her home. Staying hidden from the world is not her.

Yet, I constantly have people questioning my decision to let her live her life in the open. I promise you it was not an easy decision. I don't like the thought that my daughter could die from a virus caught on the school bus, but I also know there is NO guaranty she would be fine if we locked her away.

We choose life, lived to the fullest in our household. I wish people would understand and not question my decisions. We each have our own priorities, our own special problems. That leads each of us to take our own path. I will not question your choices. Please don't question mine.