Wednesday, September 28, 2011

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?

Friday, September 23, 2011

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?

Tuesday, September 20, 2011

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.

Monday, September 19, 2011

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.


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.

Saturday, September 10, 2011


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.

Thursday, September 8, 2011


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?

Tuesday, September 6, 2011

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!

Friday, September 2, 2011

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.
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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