Tuesday, June 28, 2011

One Lovely Blog

My friend Krista over at Thar She Sews nominated me for the One Lovely Blog Award. I am totally stoked to be nominated, especially since I enjoy reading her blog. Actually, I'm a little envious because her blog revolves around her craftiness and I so love to craft, but no longer have the time nor energy. I keep telling myself someday, but I know if I really wanted to do it, I'd do it. I can't imagine crafting in my itty bitty, way too stuffed house. Perhaps someday, I'll have a basement and my kids will each have their own rooms so toys can live there rather than my living room.  Anyway, I'm honored to have been nominated and will gladly tell her and all of you seven things about myself, followed by my own nominations.  (In case you missed it, I did a similar post way back in the very early stages of this blog.)

1.  I started playing tennis my freshman year of high school simply because I wanted a fall sport and I was way too short for basketball and I hated to run so cross country was out of the question. My play was to play tennis in the fall, volleyball in the winter, and soccer in the spring, but I fell totally and completely head over heels in love with tennis. From that fall through the rest of high school, I played tennis year round. I took lessons at the local club in the winter and summer. I took camps whenever I could. I lived and breathed tennis. So, I went from never having truly played the summer before freshman year to first singles my senior year. Unfortunately, I stopped playing in college because I had burned out. I wish I could play now though.

2.  I met my husband on Yahoo! Personals while studying for the Michigan bar exam. I couldn't study 24/7 and all of my friends were working, so they couldn't talk to me, so I went online to meet other people to talk to. The Mad Scientist worked the night shift, so he could send me emails during the day. We emailed back and forth for a couple of weeks. They were great emails, but I had no intention of continuing the emailing after the bar exam since I'd be back at work. But he ended up calling me and asking me out. I went out with him even though the date from hell had happened the night before and I vowed no more men. I figured the Mad Scientist would just be a friend anyway since our emails had been so real and interesting. And the rest is history.

3.  My new love is red wines from Argentina, especially the malbecs.

4.  When I was pregnant with my son, I was petrified the entire time that he would be born during the Woodward Dream Cruise (Thousands of classic cars driving down the main thorough fair with hundreds of thousands of people watching, all blocking the way! And they start to gather and cruise days in advance and practice all the preceding weekends.) I couldn't figure out how I would get to the hospital if I went into labor during the cruise since all of the old and slow cars would be blocking my way. Guess what day my son was born. On Dream Cruise! I had nothing to worry about, everyone got through (I had been at the hospital several days), and it was a silly thing to worry about.

5. I have always been a dog person, despite living with cats most of my life. However, now that I'm older, have little time and a tiny house, I think I'd be happy never having a pet again. (Not that I'm wishing ill will toward my current cat.)

6. I am totally a night person. Left to my druthers, I'd be up until late, late, late, and sleep in. Unfortunately, that is not an option any longer.

7.  I am short and plump and not in a good way. Living the sedentary life of a litigator and having small children make it difficult to exercise. I would love to be able to get up in the morning and ride a bike or join a friend for tennis, but the Mad Scientist leaves for work around 5:00 am and I'm not exercising at 4:00 am (see number 6). When I get home from work at 9:00 at night and finish dinner around 10:00, there is not much time for anything else since I should be in bed at 10:00. Therein lies the quandary. If I could function on less sleep, I'm sure I'd be set, but alas, I need sleep to think.

Now it is time for me to nominate other bloggers. So, here it is, the blogs I find truly lovely for one reason or another. If you've been nominated, the idea is to tell 7 things about yourself and pass it on.  (This is the blog version of a chain letter, but I'm not asking for any money, just your soul!)  If my readers have never visited these lovely ladies blogs, you should totally check them out!

DTC_125X125 One Chunky Mama

Friday, June 24, 2011

Where I've Been

Literally since the day I returned to work from my illness, I have been crazy busy. Within 20 minutes of walking in the door, I was told by two separate people that an emergency had walked in the door the day before and that I was the person who had to fix it. By noon, I was sitting in a 3 hour long meeting, discussing the emergency and devising a plan to tackle it.  Two weeks later, the emergency is no longer an emergency, but I'm still tackling it.

And while I have refused to work the weekends in order to rest since I'm still ill, I have still billed numerous hours over the last couple of weeks. Last night was the only weeknight I was able to see the kids before they went to bed and that only happened because I went to get a hair cut (I look like a ragamuffin; it's been about 2 months or more since my last cut!) and my stylist had gone home sick. (Yes, they had called to let me know numerous times, but my phone was at home).

Needless to say, my content here has been kinda lacking lately and I haven't had time to read all of my favorite blogs. I feel so out of the loop! And my game requests in Facebook have hit record numbers. I don't think I've played Bejeweled Blitz in over a week. The horror!!!

The good thing is that I am putting in hours and trying to make up for the whole scatter brain thing. I've been feeling pretty good working like this again. I definitely work better under pressure. It's one of the reasons I love what I do. And what exactly is that I do? That was asked yesterday by the kindly Donkeys to College (totally one of my favorite blogs), who chose to help me out when I asked for questions to give me blog post ideas. (I'm still open to more ideas any time. Ask away!)

So, here it is: I'm a commercial litigator. I usually represent businesses, but have represented individuals, governmental entities, and others. My normal case load includes breach of contracts, business torts, unfair competition, and malpractice (mostly defending lawyers), but I've handled construction disputes, employment matters, and foreclosures, along with other things that come my way. I work in a boutique firm with a reputation for taking on complex cases and I tend to be placed on the large trial teams. Accordingly, I rarely go to court despite being a litigator. I do write a lot though because one of my strengths is legal research. And I tend to be the one called on to lead document review teams because I'm very good at taking a large volume of information and quickly distilling it to the relevant portions.

My niche is electronic discovery and evidence. I had no thought of going into that upon graduating. But I was quickly labeled the attorney to go to for technological and computer questions and problems because I went to an engineering school for undergrad and have my bachelor degree in mathematics. It helps that I intuitively understand computers. Anyway, I enjoy that area of the law and it is constantly changing, so my expertise is always needed. (It also teaches me to be careful what I post because nothing on the internet is private and nothing on the internet is ever deleted.)

And that is what I do.

Thursday, June 23, 2011

Commemorating 100 Posts

I started writing my commemorative 100th post last night. I was going to be all touchy feely and full of love for all of you readers. I was going to do all sorts of magic here.

Then, I didn't sleep but two hours last night. My horrific illness from the last six weeks has gotten worse again (my lungs are scratching and loud, I can't breathe, and the pain is quite unpleasant). My head is pounding. I can't think straight. I forgot my phone at home. The day has been longer than long. I have no clue how I got to work. Not sure how I had the energy to make it home. And I can't remember where I left my brain.

Needless to say, I can't for the life of me remember my brilliant thoughts commemorating this 100th post. Seriously, what's so important about 100 anyway? How is it any different from 99 or 101? Yes, it's nice and round, but its nothing really. And I honestly don't feel like I've been blogging long enough to commemorate anything.

So, instead, in commemoration of my 100th blog post, I am offering up myself. Leave a question or five in the comments and in a post soon to come, I will answer all of your questions truthfully. If I get no questions than I guess I will have to find a topic of my own. That could be devastating with my missing brain. So please help a girl out!

Wednesday, June 22, 2011

My Boy

Tonight's post is to bring you a feel for the utter sweetness that is my boy, my TRex. Too often, my posts are all about the Dancing Queen, but TRex is just as important and simply a joy much of the time. He is empathetic, imaginative, smart, considerate, and an amazing boy.

Another reason for this post is because I know the Mad Scientist is not going to write the first story down (despite me telling him that is what the baby book is for). I don't want to forget it.

Today it stormed. So during dinner, the Mad Scientist attempted to explain how lightening and thunder occur. He faltered and couldn't explain it, so he asked the kids: "What kind of father am I? I can't even explain the things that a father is supposed to be able to explain." TRex responded "But you can give hugs, can't you?" And that sums up my sweet boy. He knows what matters and he clings to it. He loves passionately and purely. His heart guides him.

Another TRex story is from this morning. I was driving him to school when he asked again about his great grandma (my 85 year old paternal grandma). He said "Mommy, Great Grandma lives in a nursing home now doesn't she?" I said "yes, she does." TRex then asked "she is sick and is not going to get better, is she?" I told him "No, honey, she is not going to get any better." His response was "Mommy, I wish Great Grandma didn't have to get old and sick. I want to play with her again." Of course, I promised to take him to see his great grandma and he is happy about that. But, even at age 4 (almost 5), he knows its never going to be the same.

I could go on and on about how much TRex cares and how big is heart is, but I think you have a feeling for my sweet, sweet boy. As I watched him sleeping in his bed tonight, I thought to myself "how lucky I am to be his mom."

Tuesday, June 21, 2011

Take Me Back Tuesdays: Fireside Inn

From the ages of 4 through 30 (except the two summers when I took the New York and Michigan bar exams), during the third week of June, you could find me at the Fireside Inn on Grand Lake in Michigan. As a child, my life was measured in Fireside. Each year defined by what happened at Fireside.
Fireside Inn is not a luxury resort. There are no maids to make your bed every day. You even have to carry your towels to the laundry area and grab clean ones each day. But it is the best vacation place I can think of . . ., mostly because of family.

My maternal grandma, the original Ma, found this place back in the late 1970s. None of her children could afford to vacation on their own. (For instance, my parents were in the early twenties with two very young children. They owned their own house, two cars, and were both in college at night while working full-time during the day. Vacations were not something in the budget.) But my grandmother wanted all of us to vacation with her so she could see us and spend time with us, so she paid for all of us to go (of those who wanted to--my grandma had 13 children and at the time most of them were married with children, but some were still in high school).

And so it began. My entire family would travel 6 hours up north. Each family would have their own cabin. Grandma would have a room on the porch. And we'd have fun for a week together. All of us together: cousins, aunts, uncles, and grandma. Eventually, family friends started to join. My parental grandparents came. My maternal cousins' grandparents came. There are 18 cabins at Fireside and at some point, my family and their friends and family occupied almost all of them.

Back then, activities ranged from swimming, fishing, paddle boating, tennis, tether ball, volley ball, billiards, ping pong, board games, and whatever else you could bring or imagine. We'd take walks through the woods, put on plays, arrange family olympics, costume day. We did it all and we loved it.
At nights, we'd have bonfires with smores and hot dogs. Our parents would play poker through the night. We'd look at stars and I've even seen the Northern Lights from there.
Despite only spending one week a year there, I feel like I grew up at Fireside.
The trees are familiar and like home.
Eventually, I brought my husband to share in the experience (although, he wasn't my husband yet in the picture below--you can tell because he has no beard).
We created memories at Fireside, like days spent with my paternal grandma before she started to really forget all of us. Memories with my nephews. (Fireside was the only time I got to spend a week straight with them since they live in another state.)
I got to spend a lot of quality time with my parents and the rest of my family, just talking and playing games. It was amazing.
As the years went by, we continued to create memories. (As you can see from the picture, the Mad Scientist had a beard, so we were now married!)
We swam. We played. We enjoyed the days without worry or work.
We ate the best pancakes ever. I've been trying to find their rival down state to no avail.
Eventually, we even brought our baby TRex to Fireside. (He tried to escape our cabin to get to the lake.)
We have great memories taking TRex to Fireside, but he won't ever remember it. He was not even one when we last went.
The Dancing Queen was born before our next trip to Fireside. And when we learned that she was going to be hospitalized and have surgery right after being born, we cancelled our reservations for 2008, but we made more for 2009. 

In 2009, we couldn't go because DQ had surgery again and we had to take so much time off of work for that and all of DQ's hospitalizations. In 2010, we had similar problems. Of course, during that time, the economy went to hell and less of my family attended each year because of the economy. This year, nobody from our family went to Fireside. The tradition has died and a little part of me has died as well. 
I hope to start another tradition some day with at least my sister's family and my parents, but it likely won't be at Fireside as that is too far from the Editor. And it will never be the same because the entire extended family will never be together like they once were. I mourn the fact that my children will never have the experience that I had growing up at Fireside Inn.

Do you have a place that holds your heart?

Monday, June 20, 2011

Hard Questions

Over the last couple of months, the Dancing Queen has begun to ask really hard questions. She is fascinated by seeing pictures and videos of her as a baby. So it started by looking at pictures of herself as a baby. Inevitably, she noticed things in them, such as oxygen, monitors, or even her pacifier, that would make it obvious she was in the hospital. Then she asked "Was I sick as a baby?" Of course, I did not lie. I explained that she was born with a broken heart and the doctors worked on it as a baby. She knows she has a special heart, so this wasn't shocking to her.

The first time this happened, it was surprising to me though. I was never expecting to have to explain to a 3-year-old DQ all of the surgeries she has undergone. Nor did I expect to have to explain to DQ at this age why her cry was silent as a baby. But, she watched a video the Mad Scientist made of her as a newborn. She was on a ventilator and in the middle of the video, she started to cry the silent cry that killed us so when she was a baby. In the video, the Mad Scientist is trying to calm DQ down, but telling her it was alright to cry. Three-year-old DQ didn't understand and so I had to explain it. That was hard. She wanted to watch every video and we did through just before her second surgery. By that point, I had switched off with the Mad Scientist, so I could cry out of sight and going beyond the point where she was supposed to be fix was too much for us to handle. Those videos and photos took a huge toll on me. I never expected it.

Since then, she has asked for the pictures and videos again. It is getting slightly easier for me, but I'm not showing her as many at at time. Just when I think I can "handle" the hard questions, she throws me a curve ball. This morning, DQ wanted her polar bear (probably because TRex had to have it last night). I told DQ that her Ma gave her the polar bear when DQ was still in my belly. Her response was "the polar bear was on my head as a baby in the hospital." She was right. That polar bear sat in her "bed" as a newborn, right above her head.
From there, DQ asked why she was in the hospital as a baby. She wanted to know why she had a broken heart. I couldn't answer that last question and luckily her brother provided a diversion. I know in the future though (and probably the near future), she is going to ask again and I'm going to need to be prepared. I don't know what to say. In the mean time, I'll enjoy seeing her hug the polar bear that watched over her so closely as a little baby.

Sunday, June 19, 2011

Reflections on Father's Day

We had a wonderful Father's Day.  Lunch was amazingly fabulous. We went to a cajun seafood place and enjoyed lots of seafood. The Dancing Queen tried it all (except alligator). She is now a lover of scallops and crab cakes.  If those aren't available, she'll settle for shrimp. We calculated that she ate 2 ounces of fried fish, 1/2 a sea scallop, one bite of shrimp, and 1/2 a large crab cake. The latter was totally her favorite. She kept asking for more. It was so exciting to see my trouble eater eating so well!

We went back to my parents' house and all of us napped. After nap, we went for ice cream before heading home. Then we hit the park. The kids had so much fun with it all. It was such a nice day. I think a smile was permanently glued to my face today. Now that I'm thinking about it, the main reason for the smile was my sweet husband.

The Mad Scientist is one of the greatest dads ever. Today, he showed it. The Dancing Queen was testing him at every step. She wouldn't let him do anything for her. She was screaming when he'd come near, but my sweet husband kept his cool, he enjoyed his father's day. My favorite moment of the entire day was watching him read the kids "Guess How Much I Love You" at bed time. It was Daddy's choice because it was Father's Day and I knew my husband would never make it through without choking up. I was right. That is one of the reasons I love him more now than when I married him. He loves his babies more than anything and he appreciates them.  Since I know that he will read this, I just want to say "I love you, honey. Thanks for the best Father's Day ever."

Father's Day

For practically my entire life, Father's Day was celebrated the same way. We'd wake up early, excited to be on vacation. It was always the first morning of vacation. We'd eagerly wait for the bell to ring that it was breakfast time and leave a present at Dad's seat at the table. We'd all eat together: Dad, Mom, the Editor, myself, my paternal grandparents, friends if they were with us, eventually our spouses, and even our kids. All of us at the same table, enjoying a Father's Day breakfast.

After breakfast, the dads would play golf and the girls would go shopping.  By late afternoon, we'd all be back, sitting out at the beach, swimming, reading, enjoying our day together. Dinner would be shared around the same table again. After dinner, we'd mosey out to the porch and sit and talk over coffee, the lake a beautiful backdrop. The night would inevitably end with a bonfire.
That was Father's Day.

This year is different. We no longer take that same vacation and not all of us are together. But at least I will get to share a meal with my dad. It will be lunch instead of breakfast and dinner, but the water will be near (just not quite as close or accessible). I know that having all of us together is what matters, but part of me is crying inside that it's not at Fireside Inn, not the same. Perhaps, deep down, the real problem is that I'm only getting 2 hours with those I love rather than an entire week.

I hope all of you have a wonderful Father's Day and are able to spend it with those you love. For those fathers out there whose children have left them too soon, my heart goes out to you especially. For those children whose fathers are no longer here to celebrate, extra hugs to you as well.

Friday, June 17, 2011

Weekly Wrap Up

Just a short wrap up for the week:  I worked. A lot. I mean, a lot, a lot.

Healthwise,  I'm doing much better!!  I'm still not 100%, but today marks the end of 5 weeks of illness--35 days that I've been sick, so I am happy to be able to breathe without a great deal of pain.

The Dancing Queen's infection is doing better, the antibiotic seems to be working (all viral negative), and only one other nose bleed that I am aware of.  Unfortunately, we learned some pretty hard news yesterday regarding our little girl. I'm not ready to think about the implications regarding it yet, but suffice to say, she has a new diagnosis, a new set of doctors, and . . .

I guess the good thing about this new diagnosis is that I'm not overly worrying about it. I'm not in a tailspin. Emotionally, I'm doing very well. That is good. Evidently, progress has been made. Yay, Me! I'd give up all of my emotional stability though if it meant my baby wouldn't need to suffer any more. I guess we can't have everything in life.

Don't think I'm going to leave you with a sad post. Here is the best part of it all: I get a surprise date night tonight. Yippy! The Mad Scientist and I are going to a Vietnamese restaurant we've been wanting to try for a year now. Who knows. We may even adventure out further. Maybe see a movie in the theater that is not kid related. Are there such things? Perhaps coffee and cards? Ice cream and a stroll? The possibilities are endless and so exciting! I think I'll end now to start my date.

I hope you all have a fabulous weekend. What are your plans?

Wednesday, June 15, 2011


It happens sometimes. Friends come in and out of our lives, like busboys in a restaurant.

I've always loved that quote. I had it on my bedroom wall my first year of law school (I used inspirational quotes to dull the blahs of cinder block walls). It seemed particularly pertinent at a time when I was leaving behind the best friends I would ever have and jumping into a new world, where making new friends was a necessity. I knew that there would be some college friends who would stick forever, but many of the familiar faces would be gone, replaced by the people I'd see regularly in my new home. And so, that quote was placed on my wall to help me remember that new friends would come.

And new friends did come. And I did stay close with some old friends. Life went on. I no longer needed to be reminded that friendships come and go. I no longer needed to use computer printouts to decorate walls.

Then it hit me. That quote has been swirling in my head for the last couple of weeks. And I think I've finally figured out why.

I have reached a new phase of my life. Friends whom I needed desperately came into my life right when I needed them and now they are transitioning out as we each enter new phases of our lives. Its neither good nor bad, it just is.

I am finding it a little odd to be keenly aware of the transition away from friend to something less. It's not like I'm moving 900 miles and starting a whole new life. When you do something like that, you know friendships will be lost. When you stay put, the change is usually only noticed long after it happened.

While it may feel odd to know this is the end of a friendship, I think it is a gift as well. Because I know, I am taking the time now to be grateful for the wonderful friendships that I have developed, the moments shared. I am celebrating my friendships that are on the way out. Since I truly believe each friend changes me, I am purposefully holding onto the precious lessons learned in a way that I've never been able to do before.

Finally, knowing that this phase of my life is ending, I am opening myself to the new more readily. So, if the following moves you, perhaps you're moving to the same phase I am and want to be friends:

There are things you do because they feel right
and they may make no sense and they may make no money
and it may be the real reason we are here:
to love each other and to eat each others' cooking and say it was good. 
  ~Brian Andreas

Tuesday, June 14, 2011

Take Me Back Tuesdays: 1990

I was driving home from work the other night when a song came through my shuffle. I was immediately taken back to 1990. I was sitting in my parents' living room, the burnt orange sheers casting a glow over me. I was on the couch, doing word searches. No more cares in my mind. No more worries of adult life. I was thirteen again, rockin out to a favorite tune.

And let me tell you, I LOVED this song. I found a word search book in my old closest a couple of years ago. It was covered with "Jon Bon Jovi" and "Blaze of Glory is the best song ever!" As I drove, I felt that same exhilaration of the song. Silly as that may be.

But with the final cord, the moment ended and I was back in 2011. Back driving down the express way, going home after working way too long of a day.

What song takes you back every time?

Sunday, June 12, 2011

*That* Lady

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

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

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

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

Let me back up a little bit.

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

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

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

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

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

Saturday, June 11, 2011

Not Prepared

You are never really prepared. I think that is the big lesson for this week.

I frequently read the carepages, caring bridges sites, blogs, and facebook posts for many, many heart families. Many children underwent surgery this week or are preparing for it next week. Others are dealing with the issues we all seem to face post-op, from eating difficulties, to problem sleep. I've been there and done that. The one thing I constantly feel when reading these posts is that I wasn't really prepared for what laid ahead. And believe me, I tried to prepare. I had 19 weeks of prep time. I did tons of research. I read lots of books. I knew what to expect. But, I wasn't prepared.

How could I prepare for the moments when my baby almost left me forever? How could I prepare for days by a bedside, listening to silent cries and watching my helpless child in pain? How could I prepare for the sheer torture involved in force-feeding my baby, only to have her vomit every.single.thing back up, crying in agony the entire time? How could I prepare for cyanotic episodes and trips to the ER? How could I prepare for the pain of hearing that my 21 month old has less than 2 years to live?

The answer is, that I couldn't prepare. But, that is not what I was expecting to be prepared for. I knew nothing could help for those moments and I hoped like hell I wouldn't have to deal with them. Of course, I've lived them all.

But, what hit me this week is that I was never prepared for the loneliness that is being a heart mom and I didn't realize I had to prepare myself for that. It totally caught me off guard. And in my reading, it seems that I'm not the only one.  None of us heart moms were ready to be shoved into this desolation. We all had spouses, family, friends, someone we thought would be by our side, would help us through the hell. We knew they'd be there in any way they could and they are there. We are all surrounded by people who love us and want to take away our pain, ease our burden. But, yet, we are all still alone.

It's not something that we think about or dwell upon. The loneliness and desolation gets to us as we try to sleep at night or when the shower hums overhead. In those moments when our minds lose focus, we realize that there is nobody out there who shares our particular stresses or fears. Our husbands do their part, but it is not the same. Only a girlfriend knows how to talk. Our moms will hold our hands, but they do not sit in the same space. Our girlfriends try, but without having faced the demon that is CHD, they cannot touch our core. Our fellow heart moms are our closest allies, but they are not there in the room with us because they are facing their own demons. And then it hits, we are alone.

And so we sit alone with our thoughts, our worries, our fears. I can think of nothing worse that I can be doing. And that is what I could not prepare for, what I did not know I needed to prepare for, and what I've glimpsed this week: heart moms are united in our grief, but alone in our sorrows. We always expected someone would be by our side and we are surrounded by those loving angels and friends, but ultimately, we are each left alone.

I am not saddened by this revelation. Instead, I feel it bonds me closer to the other heart moms. I know if I cry myself to sleep tonight, I'm not the only one. More importantly, I know that even though I am alone in dealing with my darkest fears (and who isn't, really?), other people I care for are dealing with their own darkest fears alone and surviving. I am inspired. I hope that I can do the same for others. While we may be alone when the waters run still and the night is silent, I am here whenever needed. That is a promise. If you need me, I'll be here to listen (heart mom or not).

Thursday, June 9, 2011

What Helped Me

When I posted about the work I've been doing to get out of my emotional hole, one heart mom asked me to share what worked for me. So, here it is--the tool that changed my entire outlook on life.

I had been working with my therapist for a while. I had been writing many journal entries and entries on this blog that were very heavy, full of worry, full of sadness. So, to get to the root of my problem, my therapist suggested I keep an anxiety log. The idea was for me to write down what I was doing, what I was thinking and feeling doing it, and my anxiety level from 0 to 10. I was to do this once an hour for a week to see if I could figure out from where my anxiety was coming.  I started on a Friday and was religious about writing everything down. It didn't matter what I was doing, I was always anxious. And the anxiety was always something that went back to DQ. I would read an article online and freak out about something that could happen to DQ. I'd get a phone call from the school and worry about the next doctor's appointment. My anxiety level was above 6 every hour of the day and it was always something different I was worrying about, but I was always worrying about DQ's future prognoses, to the detriment of everything else in my life, including loving and accepting DQ's illnesses.

I stayed at work late that night because I had spent so much other time worrying and had to get work done. When I left around 8:30 pm, I forgot all of my papers and my tracking log. So, over the weekend, I didn't track my anxiety. I fully intended to start back up first thing Monday morning. So, when I returned to work, I closely read through Friday's log. Reading that log again after a couple of days off is what clicked for me. I realized that I was spending an inordinate amount of time worrying about worries. There is nothing useful in worrying about worries. Some worry is good. Worry about a problem that exists allows me to be proactive and find solutions. But, worrying about worries does nothing. It made me anxious and out of sorts over things I could not control. I cannot worry today about what I might do if and when DQ's pulmonary hypertension comes back at dangerous levels. That is something I have to know may come. I have to look for symptoms, but we have done everything we can today to help her. Worrying about the what ifs and how I will address those what ifs doesn't help me.

I had all sorts of worries like that. Non-productive worries. And on that Monday morning, I realized that I didn't have the time or the energy to continue tracking these ridiculous worries. Nor did I have the time or energy to hold onto them any longer. And I gave them up. I didn't bother with the log again and I, surprisingly, didn't have the overwhelming anxiety. I started concentrating on what I can control without being overtaken by what I cannot.

It has been over a month now since I came to that realization. I keep expecting to fall back into the emotional pit, but I'm not. I worry, yes. But I don't worry about worries. I channel my energy where it can be useful. And when DQ gets sick or looks bad, I don't automatically jump out 5 steps ahead to begin worrying what I might do if she needs another surgery, if these medicines don't work, if, if, if. Instead, I look at her symptoms, make the pertinent phone calls and address the situation. So far, this is working for me.

And because of this, I don't think I will be doing the testing I discussed yesterday. It doesn't help to worry about those things when there is nothing to be done. All of your comments helped me to see that. Thank you. That being said, I still wonder.

What tools have you used to get passed the fear of the unknown?

Wednesday, June 8, 2011

Could it be Me?

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

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

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

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

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

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

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

Wordless Wednesday: Tools

She needed the tools to fix Mommy's heart. (Nothing wrong with my heart, but since I've been sick for so long, she just assumed it must be my heart.) She used the screw driver, the pliers, and hammer to work on my heart. Then she declared "You're all better!"

Tuesday, June 7, 2011

Take Me Back Tuesdays

A new feature is born today: "Take Me Back Tuesdays". I will endeavor to blog about something from the past on Tuesdays. To make myself stick with it, I've even created a button for "Take Me Back Tuesdays". I hope you enjoy my peeks into the past.
 The first installment of "Take Me Back Tuesdays" is inspired by my paternal grandfather's birthday this past Saturday. I believe he would have been 88, but I could be wrong. I know he was older than my grandma and she born in 1925, but don't recall the year he was born. My grandpa died over 14 years ago in February 1997 from complications due to congestive heart failure.

Before that, he was born, I believe, in the south, and raised an only child. He went to military school, but never entered the military despite being the perfect age to join during World War II. I believe it was his health that prevented him from joining.

I'm not sure when, but he moved to Michigan. He lived with his best friend, a reverend for whom my father was named. The day my grandpa died, his best friend paid us a visit and told us a story of those early days. First, you must understand that my grandpa never liked cheese at all. He hated the smell, the taste, the thought of cheese. Back in the 1940s when he lived with his best friend, the best friend came home so excited to share a new experience he had with my grandpa. The friend regaled this story of going out to eat and having the best food ever. Actually, when he told the story, the good reverend in his late 70s, described the food as an orgasm in his mouth. He had never tried it until that day and he wanted to share the experience with grandpa, so he had my grandpa close his eyes and open his mouth to taste this new food: PIZZA. My grandpa did so and quickly spit it out, shocked that his friend would be so cruel! I imagine this is how he looked around that time (although this picture is a couple of years older as it was taken by my grandma).
I never remember my grandpa smoking, but apparently he did well until the end of his life. He hid it well.

My grandparents met in the late 1940s and married in February 1951.
My grandparents lived in Michigan most of their lives, but my grandpa was always southern boy at heart. Here is a picture with his cousins and maternal grandma taken during his honeymoon down south.
In February 1952, my grandparents had my dad. He was their only child due to the doctors wrongly typing my grandma's blood and not realizing she was Rh negative, while my dad was Rh positive. My grandparents' two children after my father never made it because of the Rh factor.
This is one of the only pictures I've seen of my grandpa and dad as a child. They were on a trip to the mountains. I presume Tennessee because that is where my grandpa's mom lived, but it could have been the Carolinas as well since most of the family lived there. I love this picture.
This picture was taken on my parents' wedding day in 1974.
This is a four generation picture, taken in Florida when I was 6 months old in 1977. It is my dad, my grandpa's paternal grandma, my grandpa, and I.
My grandpa loved cars and worked as a draftsman (although I have a memory of being told he was also an Arthur Murray dance instructor for a time). My grandpa loved cars so much, he never understood why I would go to school to be an engineer and not design cars (he never knew I didn't end up becoming an engineer at all, he died before I switched majors from engineering).

In the early 1980s, my grandpa was relocated to Virginia for work. That is where he ended his career. It was a good time for my grandparents. They were able to travel all over Virginia and Tennessee, down to the Carolinas and take many, many weekend trips in their huge RV. They spent a lot of time with family down south. Below is a picture of a visit we made to Virginia one Thanksgiving. It is me, my grandpa, his mom, who lived in Knoxville, and my dad.
My grandparents also spent a lot of time in the 1980s and early 1990s square dancing. I remember going into their Michigan basement and seeing tons of matching outfits just like this. They enjoyed it so much. These are the times I remember most, after they left Virginia and came back home. They spent a lot of time with us and they still traveled a lot. Eventually, the travel got to be too much, so they bought a place in Florida and wintered there.

The picture below was taken in Florida. This is exactly how I remember my grandpa. Well, like this, or sleeping in his comfy chair in his living room, with his hearing aid off and grandma yelling at him to come to dinner.
The last couple years of my grandpa's life were not easy. He was very sick. Below is one of the very the last pictures we have of him socializing before he died. It was only a couple of years after the picture above, but he had aged considerably.

My grandpa was not necessarily an easy man to know, which should be obvious since I didn't know where he was born, when he moved to Michigan, or much about his back story. (Grandma did most of the talking.) But what was important to me is that he loved me unconditionally.

At Christmas, Grandpa would buy each of us girls special gifts just from him. It was usually jewelry. And it was so special because he took his time to do this just for us.

Grandpa loved ice cream. I spent a lot of dinners at my grandparents house as a child and grandpa had to have ice cream after every dinner. If there wasn't any in the house, we'd go out for ice cream. I wonder if that is how my grandparents met. She worked in an ice cream shop. I will never know. While my grandma is still with us, she does not remember much. And while she lives much of her days in the past, it is a past even before knowing my grandpa usually.

We used to spend a lot of time in the summers with our grandparents as well, especially in their motor home. My grandparents camped with many friends, but the two sets I remember most were headed by firemen. Of the three men, the two firemen couldn't start the camp fires, so that was always my grandpa's job. The firemen, rightly, put out the fire at the end of the night. I have lots of memories sitting around campfires with my grandparents and their friends. Or taking my grandpa's binoculars down to the water to watch freighters go by. We'd take trips to Canada across the ferry. And I remember watching my grandparents play cards and my grandpa being the only man amongst the table of 6.

I was lucky, my grandpa lasted longer than most of the grandpas in my group of peers. It was still hard to say goodbye, especially since by the time I drove back from school to say goodbye, he was no longer with us even though he died the next day. For the last 14 years, Grandpa's ashes have been fertilizer in a memorial garden he planted and pruned and loved for years outside of the church my grandparents helped to build. He was a kind man, a thoughtful man, and his last years before he got sick, he did learn the love for pizza.

I miss you Grandpa and I love you. Happy Birthday!

Sunday, June 5, 2011

Special Ed

Thursday night we had the end of school year picnic for the Dancing Queen's special ed preschool or whatever it is called. I was put in my place for calling it special ed preschool. There is a 5 year old, who used to attend day care two houses down from us. He always liked to play with TRex, so when his mom saw us, she asked me if I worked at the school. I said no, DQ attends the special ed preschool. The woman turned to me and tersely stated it is not a special ed preschool, but the early education center. I immediately apologized and said "DQ just transitioned from early intervention in March, so I am getting used to the lingo." I was mortified at how angry this woman got with me. She literally turned on me. After my apology, she grabbed her son and walked away from me.

I've been thinking about the encounter a lot. I looked it up. The school is the early education center, but the program DQ is in is the early childhood special education program, so I was mostly correct. I'm sure the problem words were "special education" and not "preschool", so I offended a stranger because I properly named that my child is in a special ed program. Apparently, the woman doesn't like the thought of her son going to a special ed preschool because he is there simply because he is missing a limb (or at least I assume that is the reason--maybe he needs other help as well). The little boy and TRex played like crazy, doing everything and climbing everything so well that the missing limb only became apparent if they stopped for a moment's rest, which was not often.

I have to assume that the woman was upset because the term "special ed" usually carries the connotation of learning disabled. I will admit that until DQ was born, even though I know special ed programs offered help in everything from PT and OT to speech and learning disabilities, the majority of people I knew in the program had learning disabilities. But I don't think that is bad. I'm happy there are programs to help. I try never to judge a person's intelligence based upon whether they have a learning disability. Being learning disabled just means that the person thinks and learns differently than the average person. (I would think less of their intelligence if they had such a problem and refused to address it or more properly, I'd think less of their parents' intelligence if the problem was being ignored.)

That short encounter on Thursday night made it obvious that the woman has her own biases against special education, which is a shame really. Likely, her son will need services through all of school. Will she let her bias show through to him and judge him? I hope not.

For my purposes though, that encounter has taught me that it is not too early to teach my children who they are and why they are getting services if they are getting services (TRex doesn't need any services, but you never know what the future holds). It is my responsibility to teach DQ and TRex to deal with people who don't understand. Today, when the kids at our primary preschool ask why DQ is taking the school bus to her 'nother school, TRex, DQ, and I tell them that the teachers there are helping DQ get stronger, so she can play better. We've told DQ and TRex that DQ needs help because spending so much time in the hospital, laying down and sick, has left her muscles not as strong, so the therapists help. I think that is a good start for preschoolers, but as the kids age, the questions will be more sophisticated and better answers will be needed.

Odds are that DQ will have a learning disability because of the 22q deletion in the future. That means we will have to be proactive in helping her address what others may say about the special ed classes. My job is to help her not be tore down by people who don't understand by giving her tools to know her place in this world. If she is secure, then hopefully, she will be prepared when faced with people who do not understand and handle it better than I did Thursday night.

Instead of apologizing and doubting myself, I wish I would have said "My daughter is in the special education program and has been since she was 6 months old. She needs help with fine and gross motor skills because she has spent over 6 months out of her 3 years in the hospital, battling the effects of 3 devastating illnesses. We are so happy to have these early special ed programs because they have helped her gain strength and confidence that we could not provide for her ourselves. We are grateful for the help provided by the schools."

Hindsight is 20/20, but now I'm prepared too. DQ has improved so much with the help of special education services. I am truly grateful, especially as I sit here tonight, watching her pretend it is her birthday. She is signing happy birthday to me, but when she turned 3 two and a half months ago, she couldn't put up the three fingers to show her age, but today because of her special help, she can do it.

Saturday, June 4, 2011

Facebook Guilt

Have you ever experienced Facebook guilt? I felt it today. Not because of something that I said. I try to be careful where ever I post, whether it be here, Facebook, or comments. As an electronic discovery specialist, I know whatever is said online lives forever, even if deleted and hidden behind password protection, so I try to be careful. Many times I write a comment or post and don't publish it. I say what I need, but the world has no record to come back to me.

Anyway, my Facebook guilt stems from unfriending. Have you done it?

When I first joined Facebook, I friended everyone I had known previously in my life--high school, college, law school, old jobs, etc. I also friended everyone in the heart world. Then I quickly realized that some people simply collect friends and don't care about what I was saying or who I was and frankly, I had no interest in knowing what they were up to or they said things that I didn't want to hear (I don't need to know about your sex life or read you complaining about your life all of the time when you've had it pretty easy.)  So, about 2 months after joining, as I sat in a hospital room with DQ, I deleted about 1/3 of my friends. I never felt guilty about it because it was all of the people that fit in the above category, except some family members, who I just hid.

Fast forward a year and a half. I had a ton more friends. I was close to 300, with most being heart moms. I had changed my settings and created lists so that they couldn't see most of my personal stuff.  But then it happened. The heart community does what it does from time to time---start to war with itself. I will admit it on the open web. The heart community is not yet cohesive and while we hold each other up for the most part, the lack of cohesiveness and lack of leadership leads to too many people thinking their vision and their plan is the only vision or plan for helping the community. That leads to infighting.

Last summer, there was a lot of fighting. At the same time, I had been told DQ's only hope was a third major surgery that nobody thought would be all that helpful, but had to be tried. I was devastated, crying all of the time (at least when the kids were not around). My heart was broken and all that I wanted was to know I was not alone. The heart community, which generally understands, didn't care because they were all too busy fighting over who was right and who was wrong. So, I deleted over 200 "friends" on Facebook. Anyone who I did not regularly speak with, I unfriended. I even got rid of the hidden family members. I unfriended family!!!!

It is nine months later and I've refriended a couple of people who came to me and asked why I deleted them. I explained and they understood and we are friends again and actually interact.

But there are people that I unfriended I now regret. One such person is a family member who complained a lot about how unfair it was that she had to get up at 8:00 am to go to class when she had partied too much the night before and many things of that nature. It would grate on my nerves. But when she had a huge life moment and I was truly happy for her because really her posts were the posts of a 21 year old and I should have given slack, I couldn't congratulate her. I felt the guilt.

Today, as I played a game, I remembered a conversation I had with a friend from high school on Facebook. I unfriended him and I'm not sure why (other than the frame of mind I was in last summer). I have no idea if he knows I unfriended him and I never see him, but I feel the guilt. If he knows, would he think I snubbed him? That was never my intention. We didn't interact much any longer, but he was still a friend and if I saw him in a store, I'd run up and give him a hug. Instead, I unfriended him and I feel the guilt.

Overall, I am happy that I lessened the friend load. I feel better having rid myself of people who were unhealthy for me to interact with because they weren't friends. But, there are still others I have felt guilty over unfriending as well. Should it really matter? I never see any of these people in real life (except family). But, on some level, it must matter because I felt the guilt.

Have you ever felt Facebook guilt?

Friday, June 3, 2011

Dr. Death

I've had lots of thoughts running through my head since I learned of Jack Kevorkian's death this morning. In case you don't know, he is the assisted suicide advocate, who came to prominence in the mid-1990s by helping people kill themselves. He went to prison for his work and was released recently because he was dying.

When Dr. Death was at the height of his work, I was in my late teens, early twenties, so of course I knew it all and every opinion I had was strong and absolute. And I totally supported the idea of assisted suicide. I felt if someone was in desperate pain without any relief, why should they be forced to live. Wasn't that cruel?  (And no, I didn't bother to know exactly who Dr. Death was helping or why they wanted to die. I believed it was right for the situation I listed.)

Then things changed. My sophomore year of college, my paternal grandfather was dying. He wanted it over quickly. We didn't call Dr. Death (even though he lived and worked right by us).  Instead, my grandfather was placed on hospice. He didn't stay on hospice long and died within a day or two. But that was enough to expose me to a different idea--hospice.

Shortly thereafter, my father left his position as a home care nurse to help start a hospice at the hospital where he has worked for years and years. Through him, I truly learned what hospice was all about. Hospice is a way to help dying patients and their families feel as comfortable as possible at the end. They alleviate pain, keep the patient in their homes (where possible), bring in social workers and chaplains to work through grief issues and letting go, and provide families tools to navigate the end of life. Hospice will not take heroic measures to save lives because it is set up to help people let go when they have only a couple of months left to live. Some people do so remarkably well under hospice care that they have to be removed because their prognosis improves so much. The philosophy behind hospice and they way in which it is carried out helps the entire family as long as they commit to it. It can be difficult to agree to stop taking measures to extend a loved one's life, so commitment is difficult.

Around the same time that my dad was starting up this hospice, I took a philosophy course on death and dying. It made me seriously reconsider my opinions and thoughts. It made me question why I believed what I did. And it was at time that I realized I didn't know what to believe. I thought hospice was the better choice for most people, but I still believed there must be some situations that assisted suicide would be better.

Then I grew up. Life happened. I had a family member shot himself in the head in his garage for his wife to find because he no longer wanted to live with brain cancer. His wife will now have the vision of her dead husband, lying in a pool of blood, burned into her memory for the rest of her life. Would it have been better if there was a way for him to medically kill himself? I'm not sure. I don't know the process they went through to address his illness. I don't know if they sought help in coping. I presume that he did not seek counseling simply because of who he was. As an adult, I can see that learning to cope with illness and dying would probably have helped them all, rather than thinking suicide was the only answer.

The weekend my son was born, both of my grandmothers had heart attacks. My maternal grandmother's heart attack was massive and she was placed on hospice the day my son was born. She died a week later, but in that week on hospice, all of her children were able to see her and say goodbye. They needed that process and the extra help that comes with hospice.

Today, I no longer believe in assisted suicide at all. I now know that there are alternatives and more than anything, I can totally see how assisted suicide may be abused when someone is not mentally stable due to their illness.

My daughter has suffered pain her entire life. She knows no different, yet she is happy and lives life. This is all because of her outlook on life. Granted, she is a small child, but she has endured more than most people will ever face in their lives and she is happy.  I believe counseling and learning to cope are more important for the dying than ending it all at your own hands, which hurts your loved ones. We should all learn from my daughter. If she can live a happy life through all that she endures, then we can learn to do so too. When our time comes, we can know we tried our best to live a good life for us and our loved ones and should continue to do so by seeking help in addressing our end, so that it is not ended in despair.

One caveat. I've never been faced with the ultimate decision. And I hope I never have to choose to turn off a ventilator or stop heroic measures. I may change my mind if that days comes.

Wednesday, June 1, 2011


I read several blogs today. That is not surprising. I do that most days. What was surprising was that in about half of those posts, the women said they were trying to find a way to balance their lives. Each time I read that, I said to myself "isn't that the truth." I mean, my whole blog is about learning to balance life, with the emphasis on learning. I haven't achieved balance yet.

But since this is "Funambulism for Beginners", I thought I'd share with you the most valuable tool I have for tightrope walking: my wonderful and amazing husband. Without him, I couldn't do any of this. He holds me up when I am falling. And he does the majority of household duties because of my long hours put in as an attorney.

My husband does most of the cleaning. He does about 99% of the real cooking. He gives the kids their baths (Mostly because it scares the hell out of me to watch them in the bathtub. I'm always petrified they are going to dry drown.  I should never have read that article years ago!!!!)  He splits time with me at the hospital when DQ is there. We each do 24 hour shifts, but sometimes, he will take more shifts if I have to work. He usually drives when we go places. He takes care of the bills. He cuts the lawn and takes out the trash. And he works full time, leaving our house at 5:00am each morning so he can be home in time to pick the kids up from school at the end of the day.

Simply put, the Mad Scientist does all of the "woman's" work and the "man's" work.

Seeing it all in writing makes me look like I do nothing. Many times, that is how I feel, especially the last couple of weeks since I've been sick.  The Mad Scientist has taken care of me and even called the doctor's office for me when my voice was so weak, I couldn't talk on a phone (I still can't).

But what the Mad Scientist does for me the most is love me completely. He loves me when I don't have the time or energy to help around the house. He loves me when I freak out about the kids. He loves me when I go crazy grumpy because I am worried. He loves me when I stay at work until after bed time every night in the same week. He loves me ragged t-shirts and holely cotton shorts.

He loves me.

And despite the giant pain in the ass that I am so much of the time, he tells me frequently that he'd still marry me. I never thought I'd be so lucky to have such a wonderful man love me. Yet I do.

And I love him. Immeasurably.
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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