Saturday, June 30, 2012

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.


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.

Wednesday, June 20, 2012

Moving On

After last night's meltdown on here, I went to bed without dinner. I had cried myself out during the day and collapsed on the bed. Of course, sleep did not find me (until about 3:00am, right when the power came back on and the monitor in the kid's room was beeping me awake).  I tossed and turned most of the night and when the alarm went off at 5:30, I promptly ignored it.

When I got up at 6:15, I felt better. I came to decision that since I couldn't do anything about losing the new house and we will be left where we are, I will make the best of it. As I showered, I started thinking about how we could move our washer and dryer so that the laundry room/pantry could be turned into a bedroom for TRex. Is it feasible to turn our half attic into a laundry room? Would there be room for a pantry as well? Would that be a problem when the attic gets 120 degrees or 20?

As the kids ate their breakfast and I finished up packing their schools bags, I noticed a space we usually have full of stuff. That space could be emptied and a small desk would fit so TRex would have a place to do homework. Yes, we'd have a lot of fears to overcome because TRex won't walk there on his own because there are monsters, but we could make it work.

The kids and I discussed how they would continue to share a room, but that I would get the wall decals they had wanted (R2D2 and Mickey Mouse) for their bedroom upstairs instead of their new rooms. That appeased and they started discussing the possibilities that DQ may actually end up with TRex's kindergarten teacher in a year a half.  And all seemed okay in their world.

By the time I was driving to work, I was better. I talked to the Mad Scientist. He was on the same page, except he hadn't thought about putting the laundry in the attic.  We were moving on.

Then, as MS tried to call our realtor to tell her what had happened, he accidentally dialed the seller's agent. Figuring we had nothing to lose, MS explained the situation.  The seller's agent managed to get through to our agent before MS could. From there, negotiations have taken off again, seeing if this can still go through. And just like that, I'm back on my head again, not knowing what is going on.

Thank you all for your kind comments. They have helped so much.

Tuesday, June 19, 2012

I am shattered.

We were pre-approved for a mortgage with the understanding that we would rent our home. We were told it would be easy.

We found a home. Fell in love. Put an offer and an earnest money deposit.

The offer was accepted.

We paid for a home inspection. That came back not good.

We searched our sole and decided to go forward with the deal when the sellers wouldn't budge on their requests. We had enough money readily available to cover the down payment and closing costs.

We learned that the problems our inspector found with the house were not what was expected and things could be remedied fairly easily. We were elated, ready to move forward.

We learned that the closing costs were much higher than we had planned. But that was okay. We were willing to pull money out of our 401(k), pay the huge penalty and taxes, because this would allow us time together as a family. This home would allow me to come home at night BEFORE the kids go to bed. I could tuck them in. I could be a mom. Then, I could retire to my office and work a couple more hours each night. Having time with my family was worth possibly having to work years longer. We know there are no guarantees in life. My daughter will probably not be around when I'm 59.5. I want to be with her now. I want to know my son and help him become a good man. I want to see him grow, not just hear about it over the phone. Being with my family while they are here was more important than the money that would be lost in the retirement account.

We decided to move forward with the sale yesterday. We've incurred all kinds of costs for the house.

Today, I learned that I didn't read enough of the information on the 401(k).  While there is plenty of money in the account (well more than we need) and it is 100% vested, completely mine, I can't touch it. That money is so well hidden that should the Mad Scientist die tomorrow, leaving me alone with two children, I couldn't pull any of that money out to support us.

All of the money we have paid toward this new house is now gone. Lost to my stupidity. And because of that, we will not be able to get another house. We cannot expand our current house. We are stuck.

Our dream has died. We will stay in this tiny house (another HUGE mistake of mine) for the foreseeable future. My son and my daughter will share a bedroom for who knows how long. I will continue to stay at work past bedtime, only hearing about their day over the phone. We will live amongst piles for want of room to put things away. And the only way to buy a new house? I have to stop investing in my retirement account to save "quickly" for a down payment for a future house and make up for the losses I caused now (a result of student loans--another big mistake).

So, in the end, my retirement account will be smaller anyway. We will lose the money we've put toward the lost house. And I will lose several more years of good nights with my children.

Lesson learned: Never let me deal with money.

Caveat: I do know that many people would be happy to still be able to own their own home and would be grateful to have all of the opportunities we have, but it doesn't change the fact that this hurts me and has left me an emotional wreck.

Sunday, June 17, 2012


I've been told I worry too much, but when you see things like your child's growth chart not moving, you tend to worry.

From July 2010, when DQ was the sickest, until April 2011, after DQ's last open heart surgery and just before she was the healthiest ever, she grew about one inch. One inch in nine months for a 2.5/3 year old. That was not good. But, as DQ started to get healthier after surgery, she started to grow. Between April 2011 and August 2011, DQ grew about three inches. The single largest growth spurt ever for DQ at the time her heart was the healthiest ever.

From August until Christmas Eve of last year, DQ grew another two inches. We were excited that the trend would continue, especially since DQ had just started Hizentra and cutting way down on illnesses.

Then, I started to notice her going down hill. It wasn't enough to pinpoint, just something I noticed and felt. The doctors saw nothing they could do. They didn't feel like any changes could help, so we moved our baseline for "concern".

We measured DQ today. In the six months since Christmas, DQ has grown about half an inch. Only half an inch.  When TRex was that age, he grew about three inches over six month.  And DQ hasn't really gained weight either. She is hovering around the 28/29 pound mark.

She's not growing. My baby is not growing.

All she wants to do is be big. She wants to move out of her car seat into a booster. She wants to be able to climb onto Mommy and Daddy's bed all by herself to hear her good night story. She wants to sit at the dining room table without being on her knees and she refuses to use a booster.

My daughter is four years and three months old. She is the size of a two year old. The year before her last open heart surgery, she didn't grow at all. She stayed the same weight (between 24 and 25 pounds). Are we heading there again already?

Wednesday, June 13, 2012

Fun Fair

Please forgive me if you follow me on instagram or are friends with me on Facebook and you've seen these already, but I got great photos if the kids at TRex's Family Fun Fair at school. The kids had a blast.

I can't believe school will be over this Friday. So much has happened over the last couple of weeks. I need to get it out, but there is no time. So, I hope you enjoyed the pics!

Friday, June 1, 2012

Am I Bad?

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

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

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

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

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

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

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