Slumber Parties & Parks

Last night, the Mad Scientist and Papa drove to New York to help the Editor and Car Guy pack up their house for good and move to Michigan. That left Ma and I with all four kids. So, we had an experiment. The first of what we hope will be many, many slumber parties with all four kids. The night was filled with pizza, popcorn, movies, and lots of fun. The kids did really well. When the last movie ended and lights were out, they all fell asleep without trouble.

This morning, they played together, ate well, and just had fun. It was so wonderful to watch. My heart swelled with love for all of them and how good they are with each other (even if there was some bickering).  Little Car Guy, who should really be called the Screen Bandit, was very good about helping the younger kids. And the younger kids look up to him with so much awe and love. My heart was melting, watching it all.

Before it got oppressive outside, we headed to the park. After half an hour/forty-five minutes, Ma was pushing DQ in the swing and the boys were climbing climby things, so I had a couple of minutes to sit and watch some more. I was in my glory and decided to check my email. The one I was waiting for was there: "Yay!  They will vacate on July 29." Our realtor was letting me know that our new house will be completely ours on July 29th! I was ecstatic. My world was complete--my sister and her family are moving close to us so our kids can become best friends, the kids were getting along,  and our new house was becoming real! I, of course, called the Mad Scientist to share.

As I talked with him, reveling in the news that we will be moving the first weekend of August, I looked at Ma & DQ.  They had stopped swinging and were heading to the shade. I hung up with MS and asked what was going on. Ma brought DQ to me.  She had a nose bleed, was complaining of stomach pain, and was obviously in distress. She just wanted me to hold her and I did. Her heart was beating so hard. I tried to round up the boys, but they didn't want to leave. I was hanging on by a thread. DQ had only been swinging. She wasn't running! She had been regularly drinking! SHE WAS JUST SWINGING! My emotions were a roller coaster as my baby was turning limp in my arms.

Ma rounded the boys up and explained why we had to leave. The boys started joking that DQ was dieing. And I broke. I knew she wasn't dieing, but hearing out loud the fear that is always lurking in the far reaches of my mind took me over the edge. I sobbed. I tried not to let the boys see me and DQ was so out of it she didn't really know I was doing anything, but I couldn't hold back the tears. I took DQ in my arms, racing toward the car as Ma continued to talk with the boys, tears streaming down my face.

We got to a picnic table next to the car and sat. DQ with her head on my shoulder and tears flowing like a faucet by then. Luckily, by the time the boys got to us, I had calmed down. I got DQ in the car and we decided to go to one of DQ's favorites--Olive Garden--the one restaurant with gluten free food (for me), vegatarian fair (for Screen Bandit and Chef), and stuff everybody likes.  Except DQ didn't want to go. She wanted to go home. My baby was passing up basgetti!

Ma took the boys out to eat and I brought DQ in. She just wanted to sleep, but only after trying to vomit.  She is now napping, but not well. She cries out in pain every couple of minutes. I'm sure it was the heat, but it was only about 80. And she was just swinging.

Swinging.

I can't stop thinking that she was just swinging.

I hate this. I hate that my daughter can be so happy, doing the thing she loves most in the world one second, and a puddle in my arms the next. I hate that she continues to have nosebleeds for no apparent reason. I hate that she has so little reserves. I hate that life is so unfair to her. I hate that everyone's day gets turned upside down because DQ's body can't handle life.  I hate that I can be riding a huge high and that I let DQ's normal life take me down so low. I want to be able to rejoice in the happy that we have and not let the sad parts get me down, but I don't know how. I want my baby to have one day where she can play with the kids and not worry that she could die if we let her play with the kids.

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.

Sometimes I Need Help

I mentioned in passing last week that I had been doing much better emotionally.  It remains true. Now that I am starting to feel better physically as well (although still coughing and wheezing--whooping cough sucks--get your booster!), I am ready to blog about what changed.

I don't think it would surprise any regular readers to know that after I started this blog, rather than writing my thoughts on things like Sarah Palin, cell phone cancer, and chocolate covered bacon, I started to spill my guts. While I had been searching for a place to yell, what I needed was a place to cry my heart out, a place to put it out there without judgment. As I wrote earlier, I had been pouring my heart into posts on the Dancing Queen's carepage. Instead of being supportive, I had people feel sorry for me, judge my actions, or tell me I was doing it wrong. (As if there is some right way to learn how to be the mother to a special needs child or a right way to be told your child won't live to see kindergarten.)

Don't get me wrong. The vast majority of people weren't like that.  It was only a couple of people who made me feel bad, but it was enough to make me want to hide inside of myself. That made me feel worse. I was isolated without a voice.

Then this blog was born. It isn't a tool to keep people updated on DQ's health, so I haven't told the vast majority of people in my life about it. That is freeing. So freeing, I started to spew my emotional baggage. I thought blogging was helping me work through my demons, but what it really did was make me realize that I needed more help.

I started seeing a therapist a couple of months ago. She had me start journaling separate from the blog and gave me several exercises. Some things didn't work. But some things have helped. I am learning coping mechanisms and tricks to help me meet my own emotional needs.

One exercise in particular turned a light bulb on for me. I seriously felt my entire outlook on life turn 180 degrees. Since that moment, I have felt better. I am no longer consumed with the fact that my daughter has incurable, life-threatening conditions. Rather than letting each set-back hold me back, I am taking them in stride, realizing that this is our life.

I'm not saying that I am totally zen or anything. I'm still seeing my therapist and working on stress relief techniques. But, for the first time since DQ was diagnosed with pulmonary hypertension, I don't feel like I'm treading water. I'm ready to start swimming forward again.

I'm sure I will still have days where it seems like too much to handle and days where I will cry because my baby is in pain (which she is most days). There will times it will be difficult to see past the day. And the true test of my new emotional state will not be until DQ is hospitalized again or facing another heart catheterization, but I am better. When the next crisis comes, I know I will be more equipped to make it through without desperation and all consuming anxiety.

And yes, I will continue to blog about my feelings or journal for the emotions that are too raw for here because those tools help me. I can't make it through without tools. I need help.

Spent

I am totally spent, sitting at work just wanting to go home and climb back in bed and hide again. The Dancing Queen woke up around 6:30 a.m. vomiting and hasn't stopped yet. Since I have a huge memo due today and will be out of town all next week, the Mad Scientist had to make the hour drive back home at 6:30 in the morning after only being at work for half an hour. And of course, DQ only wanted mommy. Luckily, as I was leaving, she insisted on a nap, so it was okay that mommy was leaving cause she was going to sleep anyway.

TRex is supposed to be going with his Ma tonight to visit the Chef (5 to 6 hour drive). Now that is up in the air because TRex complained of a stomach ache twice AND he didn't really eat breakfast. That is never a good sign because where DQ never eats, TRex always eats. So, we are on the verge of having to tell TRex he can't go, thus disappointing him, the Chef, Little Car Guy, and Ma.  And all of this on top of poor DQ being miserably sick.

I am totally spent.

Hiding

I have been trying to hide from reality the last couple of days and instead it has been smacking upside the head over and over again. The Dancing Queen has not been well. Her ears have been bursting. She has been crying whenever she sleeps and blood and gunk has been oozing out of her ears, nose, and down her throat. That was our weekend. Add disappointing the kids, throw in professional worries, and you start to get where I have been. Oh yeah, and DQ had to be put on antibiotics again. She made it almost a week off of them this time. It took the doctor longer to figure out which antibiotic to give than the rest of the appointment combined. I seriously hope her immunologist starts her on a better treatment soon. It is so frustrating.

So, all I wanted to do the last couple of days was hide. In all honesty, that is what I want to do whenever life gets too real. It's not like I asked to be the mom of a special needs child. The one hope the Mad Scientist and I had when we were pregnant is for healthy children. While I always said I would unconditionally accept a special needs child into my life and meant it, I didn't really think it would happen. This was not the life I had planned.

My life is so much better than I could have ever imagined on most every day.  But days like the last couple make me wonder how to do it all. What do you do when your baby cries all night long from pain, but upon waking she says nothing is wrong? And you know why she says nothing is wrong is because she is so accustomed to pain that when awake she doesn't realize her agony? How do you get medical staff to understand that ear tube surgery may be routine for kids and can usually wait a month, but my child's ears will burst repeatedly if not taken care of sooner (which is why the doc ordered it sooner)?  And I'm not trying to pull priority just because this is my kid? Rupturing ear drums happened during the summer as well. Am I supposed to just accept the fact that every six months my daughter is going to have one month of her ears causing her extreme pain and rupturing over and over and over again because the tubes are falling out? How do you teach a child that the world is wonderful when they have been in pain every day?

I know that my daughter knows life is wonderful. She has taught me that more than anyone, but it is not fair. I learned that life was unfair many, many years ago, but it is so much harder having to teach my babies that lesson. I try to shield them, but there are no shields big enough. At ages 4.5 and 3, they know life can suck. This weekend, they got a big lesson in suckage. All I wanted to do was hide myself from their disappointment and anger in learning that lesson. Obviously, I couldn't. Now I hide in every other way.

At least I didn't totally melt down. I think that would have happened if I did have the counterattack of a date night with my hubby.  Even on the date, the Mad Scientist and I could not get past the stress. We never had the moment of release the tension we carry around at all times. The intensity of this weekend was too much. So, I'm still hiding.


(By the by, my previous post about fears of DQ's night cries turned out to be heart burn due to a change in her GERD meds, not ears at that time. The ear problems came back about 3 days after she stopped her last dose of antibiotics and a couple of days of good sleep after we started her back on her GERD meds at night. The best part was none of it was related to her heart.)