National Believe Day

Today is National Believe Day. Makes you want to sit down with some cocoa and watch "Miracle on 34th Street", doesn't it?  Or maybe you'd rather celebrate a different way by helping children like the Dancing Queen have a wish come true.

Every year, Macy's puts out giant Christmas mailboxes in their store. If you drop a stamped letter to Santa in the mailbox, Macy's will get it to the post office, but more importantly, Macy's will also donate $1.00 to Make A Wish.  For National Believe Day, Macy's gives $2.00 for every letter!  Just think of all the wishes Macy's can grant if we all dropped off our letters to Santa!

Not sure Make A Wish is worthy of braving the department stores on a Friday two weeks before Christmas?  Take one look at these smiles, courtesy of Make A Wish just yesterday:

 

 

 

Still not sure? The Dancing Queen will be starting her first infusion of Hizentra this weekend (immunoglobulin therapy otherwise known as a borrowed army that fights yucky bugs/germs).  She has been dreading it because she will need a shot in her belly.  No amount of telling her the needles are small has helped.  But last night, after she received the package from Make A Wish and was reminded of her upcoming big wish coming true, she took the discussion of the Hizentra two hour infusion much better. Make A Wish gives kids a reason to smile. And even though my girl manages to usually smile despite the hell that is her life, Make A Wish, has made those smiles bigger.  I can't imagine how big the smiles will be when her wish is actually granted.

So, on National Believe Day, won't you drop your letter to Santa at Macy's?


(This post is from the heart. No money was given to me for posting.)

---

PS
You can find more of the Dancing Queen at Jodifur's Shoe Friday! 

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.

The Pacifier

Picture this . . . Thanksgiving 2011. Lunch for the kids has just ended and a very tired Dancing Queen begs to take her nap. Then it hits us: we forgot a pacifier!

All hell broke loose.  DQ was inconsolable, screaming, crying, full-fledged melt down/tantrum.

Could this be a teaching moment? Would we end the addiction? We weren't about to give in to a child screaming at us.

I chose to do the only logical thing--left the Mad Scientist with DQ and made a mad dash to the closest drug store

And as my husband smashed his head against the wall calmed DQ down and determined if she had repented enough to earn a pacifier, I was lost, trying to determine which pacifier would be best for my tired girl.

I got in line behind a grandpa. We chatted as we waited for the clerk to ring up lotto tickets down the way. After 5 minutes of no movement, I asked the clerk whether we were in the correct line. The grandpa offered for me to go ahead since I was trying to alleviate my daughter.

As we continued to wait some more, the grandpa regaled the story of his young grandson and how he was so old when he finally gave up the pacifier. Then, he went where all well-meaning people go. He told me how there just gets to be a point when a child cannot have a pacifier any longer.

Then he asked how old my daughter was. I told him 3.5.

His demeanor immediately changed. He scolded "Well, you have to get her off of it. Put a piece of spice paper on it one time and she'll never go back. You've got to break her of it."

I explained that my daughter is sick and the only thing that calms her down in the hospital or at blood draws is the pacifier.

He pushed on, set in his way, and I let him.  The fight wasn't worth it and I had just paid for the pacifier.

I'm okay with it. I'm okay that he felt compelled to force his opinions on me. (Heck, I used to be that person who'd frown upon seeing a child who could walk with a binky in their mouth.)  I know people have strong opinions about it.  And I'm okay with those opinions not comporting with me reality.

I'm also very much okay with the fact that my daughter still uses a pacifier at 3.5. I saw why the day of her cath. She was in pain, in a strange place, with strangers all around her. She needed one thing that was a comfort and normal. Her pacifier is that for her. Yes, she has "pets" that she sleeps with at night,  stuffed Lightening McQueen and Elmo, but those she can sleep without. The pacifier is the calm.

DQ in the hospital waiting.

When DQ has an echocardiogram done, she is extremely well-behaved. We've been told over and over again that DQ is one of the best behaved kids they have during those exams. The only reason is because she knows she gets her pacifier.

The fact is, I want her to have something that makes her happy so that when she is being hurt by strangers, she can concentrate on her happy place. Her happy place just happens to be sucking on plastic.

My 3.5 year old has had her ribs spread apart and chest opened three times, her heart has been sliced and diced twice, she has had seven heart catheterizations, three of which had "complications", she had another surgery to correct a defect unrelated to her heart, and lots and lots of procedures under anesthesia with a breathing tube.  My sweet little preschooler usually has her blood drawn at least once a month. She has been averaging two shots every two weeks. She gets x-rays monthly, echocardiograms every four months, abdominal ultrasounds every four months, hospital stays frequently, and IVs often. She wears a nasal cannula, taped to her face, pumping oxygen in her nose every night, she takes 10 medications a day on average, and she doesn't really complain about any of it. The only thing she asks for is a pacifier to suck on when times get hard.  I don't think its too much to ask.

Besides, no matter how much she loves the pacifier, she's not going to go off to college sucking on one at night!

DQ leaving the hospital, after multiple blood draws, echo,  xrays, and lots of doctors.

Hot Mess

I think this is the longest I've gone without blogging since I started this blog. I guess I haven't had much to say that I was willing to share with the world. (I don't think I've ever run out of things to say though. If you've met me in person, you know it is hard to shut me up.) Lately though, I've thought it best to keep my thoughts and words close to the vest.

I have been petrified, angry, resolute, determined, and wistful. All at the same time.

The Dancing Queen had her seventh heart catheterization yesterday. They called me all of a week ago to schedule it. Six days to plan. Well, five days if you count the one day of pre-op testing at the  hospital. That is not a lot of time. Needless to say, my emotional journey had to be sped up and condensed, leaving me a hot mess.

I'm still trying to comprehend all that we were told, but I think overall, it was as positive as we can expect for DQ. We've been told point blank and without reservation that DQ does not have pulmonary hypertension. But we were not told that she does not have high blood pressure in her pulmonary arteries at places. So, semantics are at play.

We were told the pressure in her right ventricle is higher than they'd like, but not high enough to necessitate surgery. However, there was the mention of the possibility for surgery in a year's time. I was not expecting that kind of news.

The doc tried to balloon DQ's stent in her right pulmonary artery bigger, but couldn't.  The doc tried and tried, coming at it in all kinds of ways. In a year's time (or sooner), when they cath her again, they may try balooning again by going through DQ's neck and leg at the same time. Scary stuff. There was also talk of possible non-bypass procedures/surgeries if the neck/leg combo does not work. All of these things were fairly frightening.

Additional work that was called for, could not be done because it posed too serious a risk without enough possible benefit.  So, at the end of the day, we got pictures and a plan for other pictures to be taken in the future. Unfortunately, the docs could not take all of the pictures needed.

The entire situation makes me angry that my baby had to go through this. Better imaging technology is needed! An invasive procedure should not be the only way to image the vasculature of the body.

It makes me sad that they couldn't help her like she needed. It worries me that we have to watch her closely for the need of additional surgery. And it breaks my heart to see my sweet, sweet girl in pain and crying. Her access is so limited that she has bruises all over body where they tried to place arterial lines and IVs (but failed).  Before today, she had already lost 3 out of 4 cath points in her legs.  To top it off, DQ is incredibly scared that she will have to return to the hospital. She now knows the hospital causes pain. The hospital is the boogey man. She begged us to not make her go back. And all we could say is "not tonight."

At the same time, I am incredibly grateful to know how well my baby is doing. I have many friends whose children did not make it. Friends whose children are much, much sicker today. Life is so very, very precious. Hug your babies tight and if you no longer hold them with your arms, I am sending you my love right now.

Ignorance is Not Bliss, Just Ignorant

When I was pregnant with the Dancing Queen, my family kept the news of DQ's diagnosis a secret from another family member, pregnant with her first child.  Nobody wanted to worry the mom to be. She was so close to giving birth, the thought was it would be too much. And I was so lost in my own grief, that I didn't really care. I went along with it.

Four years in and I know that was wrong. We should not shield pregnant women. If they do not know the risks inherent in giving birth, how can they know what to look for? Moms and dads are the first line defense for their babies. They need information. They need to know what to look out for, especially since heart defects are so common, but not yet routinely screened.

I don't know why I started thinking about this today, but I did. Life is a miracle. Each day, I'm flummoxed by the thought that any of us can be alive at all because of the complexity involved. Any tools we can have to help us through are needed. Knowledge is the greatest tool available.  So, if you are pregnant or love someone who is, please let them know about CHD (read this link with tons of info), so they have as many tools as necessary to help their baby should they be one in a hundred.

______________________________________________________________________________

After posting, I realized why I was thinking of this today. Today is the 4th anniversary of the day our life changed completely. Four years ago today, I had my follow-up ultrasound, where they diagnosed DQ at 20 weeks gestation with tetralogy of fallot and couldn't find her pulmonary artery. That was the first time they told me "we just have to wait for her pulmonary arteries to grow."

Thomas

Have I ever mentioned my girl's imagination? I don't think that I have. Let me just tell you, that girl has a huge imagination. I'm talking colossal.

The Dancing Queen didn't really start to speak until she was 2 and had tubes put in her ears for the first time. But when she started speaking, we started to see her imagination shine through. For years now, the Dancing Queen has been pretending to be characters.

She'll wake up in the morning and declare she is Mickey Mouse. You can't call her by her given name. She will only respond to Mickey. Five minutes later, she'll switch characters, but not tell you until you use the wrong name.  So, I'd call her Mickey and she'd tell me "No, I'm Thomas!", even if I called her "honey".  For the longest time, she would just switch between characters, usually Mickey, Thomas, and Lightening McQueen.

One day, neighbors stopped by (neighbors we had never met). DQ was at the door and the neighbors asked her name. She responded, quite seriously, by stating "TRex". Of course, TRex was in the background yelling "No, I'm TRex!!!"  Our neighbors thought the kids were crazy, but I guess that is fine.

Anywho, DQ's pretend play has continued unabated to do this day. However, since last Halloween, she has become more serious in her play.  Last year, when we dug out the Halloween schtuff, DQ discovered TRex's Thomas the Train costume from when he was two.  DQ fell in love.

She wore the costume as much as she could, but if you asked her, she'd tell you she was going to be Elmo for Halloween (she had had me purchase said Elmo costume in August).

 

 

From that point on, more and more frequently, DQ pretended to be Thomas.  Mind you, she doesn't regularly request to watch "Thomas", but she pretends to be him. Constantly.

This year (when she decided to be Izzy from "Jake & the Neverland Pirates), as soon as the Thomas costume came out of storage, she jumped at the chance to wear it.

What's worse, she took her imaginations to a whole new level. At school, she wouldn't respond to her teachers unless they called her "Thomas".  (We worked on that.)

She had a homework assignment that included a segment on what she wants to be when she grows up. You got it, the Dancing Queen has decided she is going to be "Thomas". She knows he is made of metal, has wheels, doesn't eat, and can't give hugs, but she is certain that when she grows up, she will grow wheels and metal. Last week, she got exciting because she learned that she already had metal in her stent and mechanical pulmonary valve. She decided that meant she was half way to being Thomas! And she claims that she gets plenty of hugs now to last. And she doesn't care that he doesn't eat. (Probably because she doesn't either!) And she determined this week, that when she grows up to be Thomas, she won't have to wear oxygen.

It seems she's got it all figured out!  And I wouldn't dare squash her dreams (even if I have suggested a train engineer is a real occupation).  So, in twenty years, if you see a petite woman coming down the street, dressed as Thomas the Tank Engine, you'll know you've met the Dancing Queen.

Halloween

We celebrated Halloween like most people do--went out trick or treating with the kids at least a gazillion times before Halloween and then topped it all off with a nice jaunt around our neighborhood, collecting more candy. We have so much candy now that it will not be eaten until next Halloween (not that I will allow it be in this house that long).

The kids had an absolute blast though. They loved every minute of it.

DQ dressed as Thomas the Train for the second year in a row. And for the second year in a row, I purchased a different costume that she didn't wear.

Cap'n Hook! I bet you never guessed that was coming.

What's not to love about Halloween? You get to pretend to be something else and people give you candy.

Yes, she was eating a Snickers.

Everyone loved Halloween, even the grannies and my hubby (but he always loves Halloween.)

Halloween was a great night. The Dancing Queen even got a kiss! She was sitting in her grandma's lap, kinda like the picture above with the Mad Scientist. She was handing out candy. And as she leaned over to drop candy in the bag of a boy of age 6 or 7, he leaned over and kissed her cheek! I was so shocked, I didn't say a thing. By the time I came to my senses, the boy had run off down the street.

Unfortunately, the night was not all fantasy and sugar as Halloweens of yore. Pulmonary hypertension has stolen yet another holiday from me. I've been trying to keep it all together with so many unknowns and so little choices, but on Halloween night, it all came out.

I ran back to the house for the stroller because DQ was tiring after only a couple of houses. As I returned, she was being lifted onto the porch of a neighbor and she was coughing, the hacking cough of PH, the cough we haven't heard in so, so long. At that sound, the floodgates opened. My baby will continue to get sicker. She will continue to decline. Her heart function will worsen. Her lungs will be destroyed. We have a very limited window to find her help to slow the destruction. And we are running out of options. We have no choice but to rely upon hope and sheer determination. And with those coughs, I didn't know if it would enough. I didn't know if this would be her last Halloween. And I broke.

My Kids

This morning, as we got ready for school, I asked TRex to put his library book some place safe so it was not lost. He chose to place it on the topmost shelf in my bedroom, where no other books sit, right next to a picture of me.  That made the Dancing Queen say "That is a picture of you, Mommy."

I responded "Yes, it was taken on the trip your daddy and I took to Chicago just before we got married.  And the poem on the picture was written by your daddy to me as a gift on our wedding day."

TRex and DQ then decided I had to read the poem because they didn't think it was possible that their daddy had written a poem. (Little do they know that before the Mad Scientist became a YouTube Pooper, he wrote poetry all of the time; lovely, poignant, thoughtful poetry. But, I digress.)

So, I read the poem. And TRex asked "Mommy, why did you and Daddy get married?"

The Dancing Queen squealed with delight and shouted "So Mommy could be a princess! And daddy cried because he loved mommy so much."

Before I could respond, TRex gave her a very serious look and stated "No, mommy and daddy got married so they could have us."

How sweet are the pair of them!

Wordless Wednesday: Scariest Costume Ever!

I Hate Waiting!

I am so exhausted. I don't mean tired. I mean I am exhausted to the core.  I have nothing left. Waiting is killing me.

It has only been a week since the Dancing Queen's cardiologist confirmed one of my worst fears. We are still waiting to hear the plan; to learn when DQ will have her seventh heart catheterization. I'm no good at waiting. And not knowing is so hard on me.

On top of that, I had to sit and wait in the hospital surgical suite for DQ today as she underwent a sedated brain scan hearing test. Waiting to hear how much damage has been done to her ears from multiple explosive and horrible ear infections. Waiting to hear whether we'll need to add further procedures or devices. I hate waiting. 

DQ was so good, but fairly miserable after from having an empty stomach and being under anesthesia for over an hour.  (Not to mention the vomiting/dry heaving she did from 4am through just before going into the OR because of how scared she was.) For the rest of the day, she wouldn't allow me to put her down for even a minute. As I held her, all I could think was why did she have to suffer through so much! The emotional roller coaster of it all takes a huge toll.

Tomorrow, I have to sit with the Dancing Queen in the same office I sat almost 2 years ago. I get to wait for the same doctor who gave me no hope 2 years ago; wait thinking that I have to ask him the same exact questions I did 2 years ago. Even worse though, I have to wait in that office, talk to that doctor, with so much more knowledge. And I have to list for him how often DQ gets sick. I need to convince him that something more needs to be done. That his decision to not help her immune system is only damaging her more and causing her heart and lungs to be overworked. Somehow, in my weak mental state, I have to stay sane in this situation. I have to keep my composure and not scream at him after I know he will make us wait for at least an hour (he is always late). I can't cry in his office. If I do, he won't help my baby because he'll just think I'm an emotion mom. But, frankly, I don't think I can keep myself even-keeled. (I can't even write this post without tears stinging my eyes.)

22 Things

I was reading one of my favorite blogs, A Belle, A Bean, and A Chicago Dog, and she was participating in Mama Kat's Writer's Workshop. I had to copy because I loved the post so much.

Without further ado, I am almost 35 years old and I have never:

1.  Run for public office;
2.  Been to Europe;
3.  Ridden a motorcycle;
4.  Taken/smoked illegal drugs;
5.  Stayed awake for the entire length of "The Terminator";
6.  Visited a strip club;
7.  Skydived;
8.  Landed my own paying client;
9.  Swam with dolphins;
10.  Scubadived;
11.  Been admitted to practice before the Supreme Court of the United States;
12.  Vacationed at the Grand Canyon;
13.  Watched a show on Broadway;
14.  Tipped a cow;
15.  Witnessed a drag race;
16.  Liked coconut;
17.  Walked on stilts;
18.  Surfed;
19.  Given birth naturally;
20.  Argued an appellate motion;
21. Forgotten how it feels to have a newborn fall asleep in my arms; and
22.  Given up searching for help for my daughter.

Prompt 1.

Tatooed Freaky People

I work in a mid-size law firm, where everybody knows everybody. From all appearances, it is very conservative. In fact, it is very conservative, unless you get into political affiliations (but that is an entirely different story). Everyone wears suits every day, except Friday, where business casual is accepted, but many still look very formal.  Once a year, when we clean our offices out, we get to wear blue jeans. But that is it.

Me, I've always been more casual. Jeans were my uniform. My senior year of college, I never wore matching socks (mainly because it really bothered one of my friends and that humored me). When grunge came into fashion, I finally felt like my style became main stream.

Of course, as a lawyer, in this conservative firm, I wear suits on weekdays. I am the professional. But for nine years, I've harbored this huge fear that I would be discovered. Somebody from the firm would learn that not only are my political opinions liberal, but I do not fit in a world where people weekend at country clubs and wear cardigans instead of sweatshirts outside of the office.

But my biggest fear was that someone would discover I am a tattooed freaky person.

You can catch a glimpse of the tattoo in this photo.

I have two tattoos. One, I got after much thought and deliberation. It is placed on my back and easily hidden. Let's just say that the other one was obtained in the opposite manner and is not as easily hidden.

Seven or so years ago, one person in the firm saw my tattoo and the reaction was crazy. It was as if she had learned I was formerly a mountain goat. And she was not a person I was concerned about seeing the tattoo. And once the shock wore off, she didn't really care one way or the other, but it was completely the opposite of what she expected. That is not consistent with the firm image.

Needless to say, that encounter has stuck with me and made me even more afraid of letting people "know".

At least until tonight.

Tonight, we had a happy hour after work for all of the attorneys. This is not something we do frequently--hardly ever in fact. It was nice. I really enjoyed it. I work with a lot of really great people. And talking to them outside of the office has made me realize that all of us have a little tattooed freaky person in us somewhere, even conservative, straight-laced attorneys.

I'm still not going to let the tattoos show, but I now know that it wouldn't matter if people I work with every day learn I wear jeans on the weekend. We all have our roles to play at the office. But that is not who we are all of the time. It is nice to realize that I am more like the rest of them than I thought.

There's A Monster in My Bedroom, Mommy

Can you hear it--the oxygen machine humming at the top of my stairs? It is so much quieter than the machine we had a year ago and infinitely quieter (and cooler) than the machine we had three years ago.

Even though we've had oxygen in the home for about 1/3 of the Dancing Queen's life, starting it up again was not easy. She cried and yelled "No! No! No! I don't like oxygen!" over and over again.

Finally, it was time and we had to fight her to get it on. I mean, we were having to hold her down and everything.

She finally gave in after the Mad Scientist and I explained:  

The oxygen was medicine. She needed it. Her lungs and heart were getting sicker and she needed the oxygen to help her sleep. She would feel better.

So, I placed the cannula in her nose, the tubes around her ears, and laid her down. Then, with the saddest face, she asked "Will you stay with me mommy?" I kissed her forehead and told her "No, but I would be sleeping in my room, right next door. You can call me if you need me." She got so very scared and I could barely hear her say "But the doctors will come in."

The Dancing Queen was petrified that she would be awoken in her sleep, in her own bed, in her own room. She was afraid they would poke and prod, conduct tests, provide treatments. The horrors that little girl has lived through without understanding why. The nightmares she must have. The ones where she screams out. The pain she has endured. I've watched countless times as the nurses and doctors have done things to her, pinning her down, as she screams. I've pinned her down . . .

Here, we had brought all of that home. Or at least that is what DQ's 3.5 year old mind thought.

My poor, sweet baby was petrified for a week that the doctors would be coming to her home to torture her like they do in the hospital. Perhaps she didn't realize that fear until it became real. Perhaps the fear only existed in that moment. But, she spent all of last week as we were waiting for the oxygen to come, crying about monsters in her room. I don't think it is a coincidence.

Of course, the Mad Scientist and I explained that nobody would wake her, except for mommy getting another kiss. She smiled at that. We reminded her that no doctors will come to her bedroom. That TRex would be there with her and Mommy and Daddy were a second away. She went to sleep.

We've had no problems with the oxygen since then. It has become routine again in a couple of short nights. And the monster has not returned to DQ's room.

Similarly, the seriousness of this "new" life has become routine again. Unfortunately, I haven't figured out a way to keep the doctors and monsters out of my bedroom when I try to sleep at night. Somehow they keep me awake when not even around.

Etching Memories

I laid in my bed this morning, listening to my family playing games with each other. The laughter was infectious as my babies delighting in their pretend adventures as pirates. I ran downstairs; the crocodile in me had to chase Cap'n Hook. When I captured him, we all laughed. I reveled in the sounds and embraced the moment. I tried to etch it all in my mind so I would never forget; never forget the sounds, the smells, the visions, the feeling, the love.

I've done this often--try to capture a moment in my mind. But we were recently reminded how fragile life can be and how all of this can go away in an instant. So, this moment, this morning, I tried extra hard.

I had started to feel like it was possible that the Dancing Queen would have a future. She would grow up. She would go to college, choose a career, be an adult. I began to think that would be possible. She has been looking so good, even sick. I thought we had finally moved passed the hard part. I could put off the major worries for at least a couple of years. Yes, I would have to be concerned about viruses and stuff like that, but the big things, like heart failure and lung disease, could just be underlying issues that are only part of our life in that DQ takes daily meds. I was getting there.

Friday came and changed it all. DQ's pulmonary hypertension is back. That means her heart is working too hard to oxygenate her blood and the pressure from it all damages the pulmonary arteries that are already inadequate. DQ's heart and lungs are being damaged. And the more they are damaged, the harder they have to work to oxygenate DQ's blood. It is a vicious circle and eventually, the damage will be too much. Unlike last time this happened, I already know what choices we have. I've already called all of the specialists. I've heard all of their answers. I know they have nothing to offer.  There is nothing to save her. NOTHING. nothing.

I have always felt in my gut that DQ would die young. I've hated myself for it. I've fought myself over it. I've tried to wish away the feeling. I've tried to will it away. I've even told myself that she will live to adulthood, figuring if I said it enough, my heart would believe it eventually. But my logical side keeps throwing questions as me: how long can her poor body last when it is beat up everyday? How long can an itty bitty heart that has been cut into and sewn shut, pruned, and messed with so many times keep working when it is forced to work so much harder than it should? How can her poor little lungs that take a beating daily keep working? Muscles can be overworked. Her poor little heart is worked so hard. And while it is healthier than it was a year ago, we've now reached her peak (or likely did a couple of months ago). Her heart will start declining again. What does that mean? How much time do we have?

I know nobody ever knows how much time they will have with their loved ones, but today, I wish I could believe that my baby will live a long, happy life with just enough troubles to know the value of hard work and just enough sorrow to appreciate when life is good. I want her to fail and learn from it. I want her to light up in wonder at the sight of winter's first snow. And I want to see her drive a car for the first time. I want to walk her down the aisle as she marries. I want to help her move into her own home and see the wonderful woman she will become. But, I can't even see how any of it is possible.

Today, I am making memories because these may be the only ones we get.

---

Please don't think by my writing my feelings down that we won't be doing something for DQ. I will be pushing like I always do. I've already started the process to have her placed on oxygen at night again. We will be getting her back on meds for PH. And should it progress, I will push for other meds even though the docs think they won't work. I won't be giving up on my baby. I love her too much.

Arrr, Matey!

And yes, they did go to the grocery store dressed like this.

Thank You

Thank you all so much for your words and support after my post yesterday. I really appreciate it. 

The Mad Scientist and I took TRex out to dinner without the Dancing Queen last night (she went with Ma) and had a nice long talk. We told him everything we thought he ought to know. We explained DQ's broken heart more, we explained the seriousness of it. We even told him that there had been times when we didn't know if DQ would come home. Of course that scared him. We told him that we get scared too and it was okay.  We also assured him that the reason we take DQ to so many doctors and take her to the hospital and give her so many medicines is because we are doing everything in our power to keep her healthy. We even told him how he helps. And we tied it all back to DQ's wish. But most importantly, we let him know he could ask any question ever and he could let us know if something made him angry, sad, or scared.

Overall, I think it went very well. We did expect some questions, but he had none. Well, at least he had none last night. As I drove him to school this morning, he bombarded me with all sorts of questions. Luckily, we had time and I was able to answer them. Since DQ got sick last night, TRex was scared. Instead of taking it out with anger, he talked to me about it. It was a very good morning. And the fighting has ceased (well, at least the over the top fighting we had been experiencing ceased).

We've always been open with TRex. We have never lied about DQ's condition, but we also didn't volunteer how desperately serious it was at some points. Yesterday was not the first time we had told TRex that having DQ in the hospital scared us. And it wasn't the first time we've discussed her prognosis. But I do think it was the first time it was not in the context of DQ in the hospital or just having surgery or a procedure. I think it was more of a wake up call to TRex that this is not going away. Couple that with TRex learning this week in school that most people don't spend much of their lives in doctors' offices and hospitals and it was a little mind-altering for the poor little guy. Hopefully, now that the dialogue has started, he will continue to feel comfortable coming to us when he is jealous or angry or thinks something is not fair.

I guess the next hurdle will be when he says something is not fair and he will be right.

Unintended Consequences

TRex has been acting out all of the time at home. He is constantly fighting with us. The only response he utters is "no" or the dreaded "neVAH". And I'm at my wits end. I was ever so close to telling him I was going to send him away this morning. I didn't. Thankfully. But, I am at my breaking point with his behavior.

TRex goes through cycles, like everyone. Somedays it is just hard for him to behave. That is usually a sign that something is wrong. He misbehaves until he is ready to spill the beans. Normally, he spills the beans from the back seat of my minivan as we drive to school (the exact moment when I can't hug him or look at him).

But this cycle has been especially bad. So, I waited as I drove this morning to hear what was going on. I got nothing.  I figured we'd have another horrible day and night.  Then, as TRex, DQ, and I headed to the gym where TRex attends the before school program, TRex let it out: he wants to know when he is going to get his wish. DQ is getting a wish and he wanted to know when it was his turn.

I was totally caught by surprise. I had assumed he was having difficulty in school or with classmates. I had no idea he was jealous of his sister. (Although that clearly explains why he has been especially brutal to her--not hitting or anything, but doing the opposite of everything she wanted, messing her hair, taking her toys, telling her no).

Looking back on it, I think we explained to TRex and DQ why DQ was getting a wish a year ago when it was first granted. I THINK we told them it was because the organization heard that DQ spent a lot of time in the hospital and wanted her to get away and not be in the hospital. But I don't specifically remember. And since then, we have all been concentrating on the trip to Florida. Everyone has been excited. We are all going.

I never thought about TRex getting jealous, but each time the trip is mentioned, DQ cries "For me! I made a wish!"

This morning, in the hallway of TRex's elementary school, I was caught off guard. How do you explain to a five year old that his little sister was granted a wish because she has life-threatening illnesses without scaring the crap out of him?  After all, this is the same five year old, who has worried in the past about his sister never coming home from the hospital. We don't shield him completely, but we also want life to be as normal as possible. So, I tried telling TRex that DQ was granted a wish because she spends so much time in the hospital and TRex gets to go on the trip too and have lots of fun because the organization knows he gets very sad when she is in the hospital. I told him how it is not normal for kids to be granted a wish. And that we all are part of DQ's wish. But, I don't think he got it. He didn't think it was fair.

The Mad Scientist and I plan on speaking with TRex again this evening. But how do we get him to understand that what our family faces is not the same as typical families without making him feel oddly different? How do we explain why some children are granted wishes without scaring him and DQ too much? Or is it best to let a 5 year old know the full truth, no omissions? Would that do more harm than good? He already knows so much, but he is so young.

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?

Feeling Blessed

I should really be showering and packing since I planned on leaving my house over an hour ago for a fabulous 4 day weekend away with my girlfriends. Instead, I've been reveling in a morning to myself. I enjoyed a leisurely breakfast, good coffee, and playing with pictures of my beautiful children. I figure my friends would understand. I have an entire weekend with them and never get time alone, so I'm taking this morning.

This time alone and my ultimate decision to take the weekend away, has led me to one conclusion: my life is wonderful. I am lucky beyond lucky. I have an amazing husband, fabulous kids, a great family, wonderful friends, a great job, and so much more.

Today, I'm grateful that I can take a weekend away with friends for the first time in 7 years (I think). I'm grateful that my children are alive and able to hug me and goof around. I'm mean look at those faces.

I'm so lucky to have these precious children call me mommy.

I'm grateful for a husband who is my best friend and my life. I'm grateful for my mom who watched the Dancing Queen all week because she was sick and unable to go to school. I'm grateful that I have a job where I can go away for a couple of days and people can appreciate how much I need it.

I'm grateful for so many more things and this morning, I can see it all. But mostly, at this moment, I'm grateful for these smiles.

What are you grateful for today?

One Year

This was my girl, exactly one year ago this morning.

She played and played in her hospital room, using the bed as a jungle gym. It was very hard to tell how sick she was, but I could see it. I still can see it. She is very swollen in these pictures.

Then they gave her versed to calm her before going back to the OR. She laughed at her pacifier in her drugged up state.

One year ago today, I handed my baby over to the surgeons once again, not knowing what to expect.

At the end of the day, she looked so very good. 

 Look at that color!

 Look at that face! She was better!

And today! Today, the Dancing Queen is a big girl. She is goofy and crazy and giving me raspberries as I write this.

I love this girl and her mended heart. I am beyond grateful to Henry L Walters III, MD and the wonderful cardiovascular surgery professionals at Children's Hospital of Michigan, who saved her life many times.

It's all about balance . . . isn't it?

As a young woman, beginning my life, I was told over and over again that I could have it all. I could be the working mom. I could be a professional. I could do it all. The only limit was my dreams.

But that's not true.

You can't live all of your dreams at once, unless you are incredibly lucky. And let's face it, most of us are not that lucky.

To succeed as a mom, you need to invest a lot of time. To succeed as a wife, you need to invest a lot of time. To succeed professionally, you need to invest a lot of time. To maintain sanity, you need time to yourself.

All of it takes time. But you can't buy time. So you can't buy your dreams. You must choose.  And even if you think you have no choice, you are still choosing. 

Everyone will tell you that the trick is to find the correct balance of each facet of life to feel like you haven't given up on everything.

Balance.

That's what it's all about. Or so they try to make us believe. I constantly read articles on how to achieve balance. They all promise the same thing: if you balance your life, you WILL be happy.

But, you know what I think?

I think achieving balance is bull.  The people who sell us "balance" are the same ones who once told me the only limit was my dreams.  Life makes it difficult, if not impossible, to balance everything. There will always be something tipping the scales and attempting to knock us down.

The real trick is to stay on the line when the wind is blowing you over. You don't have to be balanced all the time. You just have to make sure you don't fall off.

I've been pretty close to falling the last couple of weeks. In order to stay on the line though, I had to let go of blogging and reading blogs for a while.  I hope some of the other things can fall away soon, so I can return to the blogosphere, but for today, I wanted you all to know that I'm still here.

Remembering

I am not immune. I, of course, remember what I was doing the morning of Tuesday, September 11, 2001. I still have the vision of classmates sobbing on the phones with family members as they learned whether their loved ones had gone to work that day in the Towers. I was glued to the television, watching the horror unfold. I also stared out a window, watching an emergency helipad, created so that survivors could be brought to the local hospital (~200 miles away). The helipad remained empty, but I kept wishing it would be used because that would mean there were survivors. No matter how much I wished for just one helicopter, none came.

I was supposed to fly that week, but ended up having to drive, on the road with millions of others. We celebrated a wedding that Friday and the start of a new life for the couple, but it had a somber cast.

Yes, I remember it all. I remember the tears, the pain, the agony, and the loss.

But no matter how much sparkle the media places on Americans coming together following the tragedy, I don't remember it that way.

Yes, many people felt patriotic. Many people came together to help save lives, to provide relief, donations, and love for the victims, their families, and the first responders. I remember that everyone looked at how they were living their lives and embraced their loved ones just a little tighter.

But I also remember fear, ignorance, and hate.  I remember people turning the other way when they saw a person of middle eastern persuasion. I remember the pride in a voice of woman who had yelled at a stranger on a bus because the person happened to be Muslim. And I remember people refusing to ride a plane or train with women in a hijab. People spewed venom at a peaceful religion, condemning it because extremists were . . . extreme.  And I remember thinking, why didn't anyone turn against the the families and friends of the men who conducted the Oklahoma City Bombing and blame all of the people who lived in the cities and towns around them? What was the difference?

I remember how classmates from Boston and NYC belittled the fear of the people from my home Michigan. I was actually told "They have no reason to be scared. Nobody cares about the middle of the country. There is nothing there."

I remember watching the start of the war in Afghanistan on tv and thinking "how will this stop terrorism?" How does killing innocent civilians save us? We don't go into urban centers and bomb the street corners where the drug cartels live and work. That would be unacceptable, even if that same cartel had killed hundreds of innocent people to protect their turf. Why was it acceptable in a neighborhood outside of the U.S.?

To me, 9-11 doesn't only represent a time when the nation came together in shared grief over a tremendous loss, but it is also the day the psychopaths won.  The extremists who killed so many on that Tuesday morning ten years ago hated that in America differing views were tolerated, that we could work together despite the differences, that we had choices. Today, America doesn't tolerate differences. We don't work together. And the only choice we have is to go along with the majority view or else be labeled unpatriotic. The prevailing attitude of most people is us versus them. There is no longer trust in our neighbor and listening to opposing views is only done for the purpose of tearing down and finding a sound-bite to instigate greater fear and hatred.

I think a lot of the divisiveness that defines our age started on 9-11. People were forced to take their head out of the sand and when they realized that most people didn't think just like them, they started to revolt. But instead of revolting against the psychopaths, they revolted against everything that was different. A society that was once made great by embracing differences is now defined by how little it accepts any deviation from the popular point of view.

So, while I have cried the last couple of weeks when I've heard stories from 9-11 and I remember the pain I felt at that time, I mourn the loss of the America I loved.

School!!

Getting two kids ready for three schools in the morning, then heading off to work all day, to come home to do the paperwork and other odds and ends for two kids in three schools is E X H A U S T I N G. And I'm lucky. The Mad Scientist has made TRex's lunch and two healthy snacks each day and made sure the Dancing Queen's meds are within reach for the morning.

But, other than that, school is going well. Both kids are really enjoying it.

TRex loves his teacher and he may even have a crush. He told me she was the bestest. And the plan developed by TRex and I worked. Yesterday, he read books at the before and after school program AND drank his water. Today, he played with another kid (I'm guessing a first grader). He loves his class, he is enjoying his before and after school, and best of all, I don't have to force him out of bed each morning with a crow bar!!

The Dancing Queen loves, loves, loves going to her 'nother school and the new school (special ed preschool and mainstream preschool respectively). Each day she has fun and we know they are helping her.  At the special ed preschool, they are working with her on gross motor and fine motor skills. While cognitively, DQ is at or above age level, she is about 2 years behind in her gross and fine motor skills (due to extensive hospitalizations, surgeries, 22q deletion, hemihypertrophy, and lack of endurance due to heart and lung disease). So, working with the physical therapist and occupational therapist at the school is very important.  The teachers also help strengthen her.

Unfortunately, all of that physical activity leaves DQ very tired on her way back to her mainstream preschool. And she is on the bus for about half an hour or more, so she falls asleep.  That is not good because then DQ doesn't take her regular two-hour nap.  Soon, her body won't be able to handle it and she will start to get sicker. With her weak immune system, it is asking for trouble.

We didn't have this problem last school year because she was only on the bus for about 7 minutes.  However, the current bus driver alleges that it is impossible for DQ to get to her mainstream preschool no quicker than 25 minutes (same distance, yet takes 3 times as long!)  So, the Mad Scientist and I are at a loss. We had hoped this was just first week of school glitches, but after today, we've been told this is as good as it is going to get.

We don't have the money to pay someone to pick her up and bring her to her mainstream preschool. We don't have the money to pay for private physical and occupational therapy. And we don't have the money to quit one of our jobs to get DQ from the special ed school. We could pull her totally from there, leaving her in the mainstream school, but would that be wise? I don't know.

What I do know is that she cannot continue only napping for 5 or 10 minutes on a school bus rather than 2 hours on a cot.

Maybe next week will be better?

First Day

I wasn't going to post tonight. I was too tired. But as my life would have it, as soon as I decided to head to bed, my brain went into overdrive. I kept going over the day--the first day of kindergarten.

We survived!

 The Dancing Queen had a blast at her 'nother school.

TRex enjoyed his class and his teacher.  And I never cried! There were some pretty hefty tears welling up inside, but I kept them in check. I had to. My boy was so scared. I wanted to protect him, to help, to show him it would be okay, but I couldn't be there with him the entire time. Since I couldn't, I didn't want to leave him with the vision of mommy crying and I held it back.

Leaving him all alone in that big school was one of the hardest things I've had to do as a mother. I kept wanting to call to check in on him like I did when he was 3 months old and I dropped him off at day care for the first time, but I couldn't. Instead, I sat and worried, thinking of every possibility that could go wrong, like what if he doesn't know to ask if he has to use the bathroom and gives himself a bladder infection (we had a problem like that with him when he first started at his last preschool).  Or what if can't get his lunch food open and is starving? And my biggest fear was if he would make it to his after school program okay.

I'd like to say none of my fears were realized, but that is not quite true. I was way more worried than necessary, but TRex didn't eat much of his lunch and was STARVING for an early dinner (worked out okay because he finally gave chili a chance and loved it).  TRex was excessively thirsty because he was told the drinking fountain was broken, so he couldn't have water. I asked him why he didn't drink the water I packed and his answer was that the teacher at the afterschool program didn't know he had water (he didn't think to tell them). As soon as the Mad Scientist got to TRex, he immediately asked if he could drink his water and then guzzled the entire container. My poor baby.

And that wasn't the worst part about the day. My biggest fear came to life as well. TRex felt abandoned at the afterschool program.  School got out at 3:45 and the Mad Scientist was there within 45 minutes, but when he arrived, TRex was in tears. All day, he had been taken places, shown what to do, with lots of new friends and classmates, then he was just left in a huge gym with a couple of other kids and a teacher who he didn't know (even though we introduced him this morning). TRex wanted me and he wanted the Mad Scientist and we weren't there. And it breaks my heart.

I was a latchkey kid (well not really because I went home by myself and my sister, not to a school program). I remember being the last kid left some place. I remember the waiting for my parents. I don't remember being sad about it, but I remember it being hard (and I was probably sad at points). I also know that in time, it will be okay. I just wish TRex could learn this lesson at a little older, but I don't have the luxury of not working, so we'll do the best we can now (it still breaks my heart).

TRex and I developed a game plan. First, when I drop him off tomorrow for the before school program (which is the same as the after school program), we are going to look for books to read for him. I'm going to talk to the before/after school program coordinator about TRex wanting a drink and not knowing how to ask for it. TRex has been told that if he is thirsty, he is allowed to ask for a drink. And most importantly, TRex knows that he will be able to read books at the end of the day while he waits for his daddy to pick him up. And we have reinforced that he will always be picked up.

Once these issues are worked out, which I know will take time, I think TRex will do really well. He was very excited about everything else. He told us about classmates, stories, his Spanish teacher, and eating lunch by the windows. He is looking forward to a real recess too. Apparently, they were running late today and didn't get to really play.

So, we survived. Tomorrow, we will work on enjoying more. And, hopefully, some time soon, school will be easy and fun!

I'm Not Ready for Kindergarten

I've had so many random thoughts for posts running through my head this week. I've even started drafting several posts. But, I just can't seem to complete my thoughts. I hit a roadblock---either I can't figure out how to connect what I want together, I think it shouldn't be shared with the world, or I get distracted. I have been so easily distracted this week. I know it is my emotions getting the better of me. That is part of my lack of posting and reading blogs too. I have found myself getting angry with other posts or annoyed. I've been yelling at the news a lot too. I didn't want my emotional opinions out for the world to read because I might regret them after I return to normal.

So, you may be wondering what has my emotions in a tizzy. Even if you don't wonder, I'm going to say it: I'm freaking out about kindergarten starting on Tuesday. I worry that TRex is not ready. I worry that his dislike for coloring or writing will hurt him. I worry that at 17 months old he knew all of his letters, upper and lower case, and he was beginning to recognize words. But today, he can barely recognize his own name and he doesn't know all of the letters. I worry this is going to hurt him, even though I was told it would not be a problem. I worry that he won't make friends. That he will be scared. That I won't be able to protect him from how horrible children are; how they ostracize, make fun, and hurt others. I worry that he will be the one ostracizing, making fun, and hurting someone else.

But my true over-riding concern is that I have failed him in the past. I allowed him to forget his letters. I didn't force him to write or color when he didn't want to. I kept him in his long-time preschool until last December.  I tried to keep him emotionally stable to the detriment of his learning because I couldn't handle two children in crisis at the same time. What if I do it all again when the stakes are so much higher? I've been worried all week about what will happen to TRex when DQ ends up in the hospital this winter. What if I revert to parenting in the moment, concentrating on treading water, and can't propel TRex forward like he needs? And TRex does need that push. He often lets his fears prevent him from moving forward. What if I'm incapable of pushing when he needs it most? What if TRex starts having problems at school? What if he is bullied or doesn't have any friends or is miserable? What if I miss it because I'm distracted? Will I fail my son again?

Yes, a lot of my fears about kindergarten have been very self-centered. But when it comes down to it, I have to be the parent to two children and sometimes it feels like TRex gets the lesser end of the parenting because he is not sick and not delayed. I don't want him to feel that way. He deserves a mom who is just as attentive to him, who will pick up on the problems that happen at school. And now that he is in kindergarten, there will be so many more factors that I cannot control, cannot know all about. I won't be able to protect him the way that I want. And I'm so afraid that nobody else will care or know if he is hurting.

I have been paralyzed with this fear that I will let TRex down . . . until today.

Today, I sent TRex's new kindergarten teacher an email, explaining his backstory and his connection to his sister. I explained how he gets upset when she is sick and in the hospital and how we never know when it will be. I explained the seriousness of DQ's conditions and how TRex is just beginning to understand it as well. And then I told her if TRex started acting out or withdrawing from class that it would likely be related to his sister.

It felt good to send the email. I knew then that TRex's teacher at least would know what to expect. I didn't hold out much hope of getting a response on the Friday before the holiday.  (My experience with teachers in our public school system has been limited to DQ's special ed preschool teacher from last year and she left me angry on several occassions and NEVER responded to any messages, by any means sent, until I had tried to communicate with her about 5 times.) But, even if TRex's teacher never responded, I felt better knowing I had started the ball rolling. I planned to follow up by mentioning my email on the first day and go from there.

But I didn't need to do any of that!  TRex's teacher responded to me within an hour, thanking me for letting her know. She wants to set up a meeting for the Mad Scientist, myself, the principal, and her to discuss and make a contingency plan. I already love this woman! Maybe this school year won't be so hard after all.

Fraud

I haven't been posting because I feel like a fraud.

In my last real post, Thursday night, I wrote how I intended to make "me time", how I was just going to plan it and make it happen because I am worth it.  Unfortunately, I was quickly reminded the next morning of why I don't normally have me time: the Dancing Queen's precarious health.  We spend so much time on doctor's appointments, therapy, procedures, etc, that "me time" is swallowed up by being a "normal" family, work, and sleep. And I can't just make "me time" happen unless I forgo sleep (much like I am doing right at this moment).

That is why I feel like a fraud. I promised to myself only a couple of days ago that I was going to make time for me and the very next morning, the promise was broken. I don't know how to rectify this or if rectification is necessary, but I do know that I don't feel right.  I feel guilty for declaring that I enjoyed the time away from my kids because for a moment I didn't realize that the Dancing Queen wasn't doing well (because I didn't see her for a couple of days). I feel guilty for making myself a promise (that was told to the world no less) and know it can't be kept (not with DQ home from school two days, three appointments this week alone, then school starting next week).

And maybe "guilt" isn't even the right word. But I don't feel right about my "me" post, but I also feel like I was right in the sentiment behind it. I am worth "me time". I am more than just my family and work, but in order to keep it all going, I have to continue putting myself further behind.

I also don't feel right about wanting to take time away from my kids and taking care of them because it is not their fault either. As much as I didn't ask to be the parent of a special need's child, the Dancing Queen didn't ask to be born with a horrific set of conditions that threaten her life and make everything more difficult, even the easy stuff like, breathing and eating.

And so I feel like a fraud. My statements on this blog last Thursday, while heart-felt at the time, were not quite right. And this blog is merely an extension of me, so I have felt not quite right. I am not that together. It is not as easy as scheduling "me time".