Tuesday, May 31, 2011

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.

Monday, May 30, 2011

This I Believe

My friend over at One Chunky Momma wrote a post about what she believes. She inspired me to write a similar post. It was not easy. I could easily spew what I do not believe, but what I do believe is so much harder to verbalize.  That's probably why politicians always say no and berate the other side, rather than finding solutions. Taking an affirmative position is hard work. (Yes, honey, that last part was for you!)

I believe in the here and now. I believe this is it. Since I don't believe I will be saved, I live each day being responsible for myself and my actions, knowing that I have to be accountable to me and to those that I love.

That has been one of the hardest things I've faced in having a child with a life-threatening illness. I rely upon the doctors, nurses, and therapists to save her life. I rely upon my husband and myself to find the correct doctors. And I rely upon my family, friends, and community to get me through the tough days. While I don't believe prayers are being listened to by someone up above, I can feel the love when people are caring for us and that helps me through.

More than anything, I believe in the power of people. A group of people bound together for a common goal can accomplish almost anything. People working together created the great nations of our world. People working together made modern medicine possible and all of the lives saved. People working together create all of the new innovations, technologies, and theories that propel our lives.

You may be thinking to yourself that some inventions were the result of one person's thought. But I believe that every person who had a great idea was given inspiration from those before them. Even more important, each person who has ever done anything great, has been supported and loved, cared for and nurtured, by someone else.  Even those unfortunate souls who have suffered their entire lives without the love they deserve, have been put in the position they are in because of the people surrounding them.

Each of us are made up of the circumstances we find ourselves in and how we react. Each moment of each day bends and molds our being. Every person with whom we interact changes who we are and who will be.  If we each harnessed the power we have within to better our world, we could accomplish great things.

By smiling to the stranger on the street, we may give that person a reason to smile. By volunteering our time to help others, we give those people the opportunity to get strong again. By holding another person's hand as they grieve or sit at a bedside, we give them strength to continue when all they want to do is fade away.  These things may be simple, but if we all took the time to remember others, our entire society would be better.

I believe in love given freely and shared widely. A person who has been loved, can show love to someone else. Love makes us immortal.

Several years ago, NPR hosted a series of essays written by everyday people and celebrities, where each explained their beliefs. It was a remake of series done in the 1950s or 60s.  And it is by far one of my favorite series EVER. I have a book collecting many of the essays somewhere in my house. I've read them all. I love knowing what others believe and how they came to that point. Penn Jillette wrote an essay about what he believed. It resonated with me more than anything I had ever heard or read before. I even sent it to my mother to tell her what I believe.

After writing this post, I read it again to see if what I wrote was anything close to that earlier essay. I don't think I'm nearly as eloquent, but I don't think my beliefs have changed.

What do you believe?

Thank You

I've only visited DC as a tourist once. (I've been there for work on several occasions, but taking depositions in a hotel conference room looks the same no matter what city you're in so those don't really count.) My mom and I visited one of my friends when she interning at the NIH one summer.  I must have been in college when we went, but I don't remember the year at all.

We drove through the night in August in the rain. It was a gazillion degrees and humid like a sauna. But, DC was lovely. We shopped in Georgetown, we stayed in Maryland, but what sticks out to me most, was visiting Arlington National Cemetery and the Tomb of the Unknowns. I remember thinking how great the sacrifice so many have made for us and in support of this great nation. No matter what I think of politics (click here, here, here, or here to see), I still love this country and believe it has the potential to be great again once we can move past the current climate of "me, me, me".

One of the main reasons this country is great, is because of the sacrifice of the soldiers, sailors, airmen and women, and their families. All who have served are appreciated. 

Thank you.

Saturday, May 28, 2011

Rainy Tarmac

We stood in the rain for at least an hour, waiting. The excitement was palpable even if the we were cold to the bone. This is what we had worked toward through endless practice sessions over weeks.  We were not going to let a little rain stop us. We all knew the songs, knew them better than any songs we'd done before. This was to be the most important concert ever. I held my flute so tight, waiting for the moment to play.

There were maybe 30 or 40 of us 5th and 6th graders in the band.  All of us had only been playing for 6 to 18 months. We stood in front of the crowd of elementary school students. They all had umbrellas, but with our instruments, we couldn't hold them. So we stood in the rain and waited.

Then his plane landed. We started to play as he came out. He was going to hear us play. I could barely move my fingers because of the excitement, fear, and awe.

Then it happened.

He was surrounded and bundled away. He never heard a note we played. The car took off. We stood there stunned. Wondering what we had done.

Later, we learned that there had been a bomb threat. The president was much too important to permit to stay on the base. Yet, an elementary school's worth of children stood on the tarmac in the rain during the threat and word one was not uttered. They never bothered to move us.

That was the day I started to grow up. I learned what politics and government were all about: saving politicians, not saving the future.  As I drove by that tarmac again tonight, lit up waiting for a plane to land in the rain, I thought about that day and realized nothing has changed, except the faces of politicians who sacrifice the children to save their own jobs.


I was sitting at my computer, checking facebook, when the Dancing Queen walked by with the stool in her hand, saying she needed to go upstairs to get the old dog. What could she be up to?

I followed.



She pointed to the treasurer she needed.


Then I remembered the penny she had found! She needed the old dog bank.

She carried the old dog downstairs, until the cork fell out.


DQ decided to put the coins away on the stairs.

I thought it was safer at the table.


She continued to put coins into the bank for quite a while. We love this activity because it helps work her fine motor skills. DQ is still very behind in fine motor skills in part due to her overall weakness, but also because of her long, gracile fingers associated with her 22q deletion.

What a fun adventure!

Friday, May 27, 2011

Weekly Wrap Up

I had started doing weekly wrap ups back in April and stopped for some reason. I've decided to bring it back.

The main wrap up for this week is: whooping cough! You got it right. Mom on a Line has been suffering from whooping cough (at least that is the working presumption--tests were not done because it wouldn't change my treatment).  I have been terribly careful about not spreading germs, so I hope I did not inadvertently infect someone.  A few lessons learned from this is (1) everyone needs their DTap booster every 10 years; (2) my kids vaccines seem to be working; and (3) I'm miserable when I can't breathe.  How does DQ do it?!?

I have been sick for two weeks now. My throat has been hurting that entire time. I've been coughing like crazy. I lost my voice on Monday and still do not have it back. My lungs are so sore. It hurts to breath. And I had to have two shots! Waaaaa!  Okay, I'm done whining now.

Back to the wrap up.

We got our new range.  It has not been hooked up yet. Apparently, the Mad Scientist needs to buy a connector part.  I am so excited to cook something with gas.  The kids are a little afraid of having fire in the house though. They haven't seen the new range in action and the idea of actual flames to cook the food is too much for them to deal with. The first time it is used should be interesting.  If it's really interesting, I'll share the story here.

DQ has fought with me every single morning this week. She has decided to start screaming fits whenever she doesn't get her way. Of course, I don't give in. That makes the fits go louder and longer. It has been pleasant. NOT! I'm ready to move beyond the horrific threes, thank you very much.

Our cable is going. AGAIN. Last spring for about 4 or 6 months, we had no cable.  It started leaving us slowly, a channel here and there would begin pixulating. Then the channel would just be gone.  Eventually, they all left us. We called out technicians. They'd fix something or replace that box. It wouldn't work. Then we were told it was a problem with the electrical wiring in our house. We had that replaced at great expense. Still not fixed.  Then we learned if we stopped using internet, we'd get cable and spent a while switching back and forth and buying $100+ power splitters (who knew!).  None of that worked. Finally, a new person came out and fixed the outdoor connections. That seemed to fix the problem . . . until two weeks ago when the channels we watch most started to pixulate. We've now lost Nick Jr. completely (no "Little Bill"!!!). We have NBC and Food Network in regular, but not HD, which is fine . . . until those go as well.  I need me some down time! The whole situation is just odd and annoying and if it goes as last time, in about a month, we'll have nothing.

DQ only had one doctor's appointment this week, so that is good.  The appointment was yesterday. She woke up with gunk in her hair and dried blood in her ear. Apparently, there is no infection this time.  The doc seems to think she busted a blood vessel in her ear. The first thing I thought of was her screaming fits with the ear piercing screeches. Can you bust a blood vessel from screaming because you don't want to go to bed?

That has been my week. (Except for the part where I embarrassed myself on this blog by posting high school photos!) Anything exciting happen in your week?

Happy Memorial Day! Let us all remember the sacrifices made by the thousands and thousands of veterans who have laid their lives on the line for our ideals, freedom, and safety.

Wednesday, May 25, 2011


I kissed them both again as I do every night and I thought to myself "this is what it is all about." The love for my children, for my husband, my family, makes everything worthwhile.

How can anyone say having children made me less happy?

I read an article earlier this week that talked about how much more unhappy people are when they have children. Apparently, some researcher looked at stress levels in women with children and compared those to stress levels in women without children and determined women with children are more stressed and less happy overall. I am totally going off of the top of my head here. It may have been some other factor they were comparing. I read it a couple of days ago and didn't think much of it really.

Or so I thought.

Yet, here it is, 11:30 on Wednesday night. I'm on my way to bed and I'm thinking how flawed that study must have been.  How could anyone suggest that being a parent isn't worth it? Perhaps that wasn't the point of the study or even the article that I read, but that is what stuck with me.

Being a parent is totally worth it. Is my life more stressed than before I had children? Most definitely! Am I more tired? Yes. Do I have less money? Decidedly so. Has my privacy gone out the window? Usually.

But I don't think any of that is bad. I am stressed, tired, broke, and constantly surrounded because I have someone to care for, to love, to nurture.  I have two small, helpless babies who need me. Taking care of them has made me a better person. It has made me care more, love more, see more, feel more, and be more.

Clearly, if I did not have children, I would have more money. I would likely have more time to do things like go out, get a massage, take vacations, and basically pamper myself. And I would likely be less stressed. But what is the point in that?

I've always been a person who loves to give. I can't even hold on to gifts until the proper day to give them because I enjoy the act of giving so much. Being a parent is giving the best gift ever--the gift of life. I am responsible for helping two extraordinary individuals find out who they will be and I get to teach them the wonder in this world, the magic in life. How awesome is that!

I don't think parenthood is for everyone. I'm sure some people are happier without having to change diapers and being able to sleep through the night rather than chasing after a toddler running through the house with finger paint still wet and dripping. I'm sure people have plenty of good reasons why not being a parent is correct for them. And I say bravo to you for making your own decision.  But for me, the hugs, the kisses, the stories, the smiles, the laughter, and the everything that make up my children outweigh any possible negatives. I can't believe someone would suggest I would be happier without my children.

After writing this post, I found the article: Does having children make you happy?

I Was A Senior Hottie

A month or so ago, Liz over at A Belle, A Bean & A Chicago Dog thought it would be fun to party like its 1995 and convinced us to post our senior pictures, showing our "style".  And "I Was A Senior Hottie" was born.  Since I am a glutton for punishment and my legs looked pretty darn good in 1995, I thought what the heck! Take a gander at Mom On A Line before I was a mom or balancing anything. (At least I didn't know the real balancing act hadn't started yet!)
Captain of the tennis team and first singles, sporty M.O.L.
Not sure who this girl was trying to be. Is that a carpet vest?
My attempt to look like myself. I wore those sandals and that sweatshirt everywhere.
While those were my senior pictures, complete with floral vest and inside out sweat shirt, I've also included my graduation picture.  As you can tell, senior pictures taken in June before senior year did not look anything like the M.O.L. who graduated high school.
Yes, I chopped all of my hair off like two weeks before school let out.

If you want to join in the fun, dig up your own senior photos, post them on your blog, and link up at A Belle, A Bean & A Chicago Dog. Or if you just want to check out the other senior pictures from 1995 (and many other years), go to the site and click on the links.

Tuesday, May 24, 2011


 7:30 this morning!
 This evening!

Monday, May 23, 2011

Decision Made

A huge burden has been lifted from my shoulders. I feel imminently lighter.

The Mad Scientist and I finally came to a decision as to whether to send TRex to kindergarten in the fall.  I have been worrying about this decision and how it can alter the rest of TRex's life for months now. I've fretted over whether holding him back will be the correct choice or whether sending him would do better in the end.  I have been changing my mind minute by minute.

That is not me. I'm usually very good about making decisions. I think very quickly and decisions are made and finalized before others even knew there was something to decide, but I fretted over whether to send TRex to kindergarten. I asked every person I could think of with an opinion. I read and read and read article after article. I debated the pros and cons. Each time, the decision was too close to call. When it came down to it, the part of the decision that weighed heaviest on my mind, nobody could give me an answer.

Ultimately, the Mad Scientist and I had to decide whether we thought TRex would be emotionally stable enough to make it through kindergarten while his sister was in the hospital. I still don't know if he is stable enough. But through all of my searching, I learned, that he may never be stable enough. He is a very empathetic little boy, who cares for his sister more than anything in the world. When she is in the hospital, it hurts him in his core. I don't think giving him a year will change that. He will only care for his sister more as time goes by (as we all do). So, I took that out of the equation.  Once that part of the question was pushed aside, the answer became easy.

TRex will go to kindergarten in the fall. He will turn five a couple of weeks before classes start.  And he is very excited. He may struggle at some point being one of the younger kids in class, but a good friend reminded me that he is lucky enough to have educated parents, who can and will provide him any help needed.  For now, I think he will do great. He is a smart kid with tons of potential and he wants to learn. Pre-k wouldn't provide him the structure or challenge that he desires. How could I hold him back?

For now, I'm very happy having this decision made and done with. In a couple of months, I may start to freak out with the thought of my baby in kindergarten, but for today, I'm good.

Sunday, May 22, 2011

22q at the Zoo

 Today was 22q at the Zoo, an international event to raise awareness of the microdeletion of chromosome 22q11.2.  People from across the globe gathered at their local zoos in support for the 22q population. We, of course, took part in honor of our Dancing Queen.
The microdeletion of 22q11.2 is what I regularly call on this blog as DiGeorge's Syndrome or Velo Cardio Facial Syndrome.  DQ more classicly falls into the category of DiGeorge's Syndrome because her manifestations of the 22q deletion include the heart problems, immune problems, and hypocalcimia/hypoparathyroidism.  But, all of the syndromes are really just manifestations of the 22q deletion.

Over 187 different types of manifestations have been connected to the deletion of chromosome 22q11.2 and it regularly affects the following systems: heart, pulmonary, kidneys, GI, ears, eyes, facial features, endocrine system, immune system, teeth, and palate, and frequently causes learning disabilities and psychological problems as well.  Most people, if they exhibit any symptoms, only have a dozen or so that manifest over their lives.   So far, DQ has exhibited approximately 30 of the various manifestations and she frequently sees specialists to make sure new problems are not missed.  DQ has dealt with issues in all of the areas listed above, except psychological problems and her learning disability so far (if you can call it that), was late speech.

The 22q11.2 deletion is very common--the second most common chromosomal abnormality behind Down Syndrome, but some people believe it is just as common as Down Syndrome, just not diagnosed. At least 1 of every 4,000 people are born with the 22q deletion.  Today, we met with several families living with 22q deletion at the Detroit Zoo.  It was wonderful to see them and raise awareness. We did have at least one person ask about 22q, so we did our part.

Next year, we hope the event will be bigger and reach more people.

Thursday, May 19, 2011

Unexpected Lessons

Let's just say this hasn't been one of the best weeks I've had in a while. But, not in the emotional baggage kinda way. On that front, I've been doing tremendously well. Really, really well in fact.  Dancing Queen gets sick, goes on the third round of antibiotics for the same infection and I'm not freaking out. We even think she may have had SVTs at the end of her nap Wednesday (at school) and I'm still not freaking out.  I worry yes, but not the worry that was overtaking my life even a month ago. I am even starting to defeat the scatter brain problems.

But, back to this post.  This week has been fairly lousy in matters of my health.  I spiked a fever and crazy abdominal pains on Saturday afternoon, hit the bed and didn't really get up (except to change to the couch so I could watch chick flicks) until Tuesday morning when I had to go back to work because my fever subsided in the middle of Monday.  Tuesday my allergies (or so I thought) kicked in over-drive and by Wednesday, it hurt to breathe, my throat was swollen and sore, and I could not stop coughing.  I was certain it was allergies and my allergy medicine wasn't cutting it. I thought that until this morning.

This morning, I thought to myself, maybe I'd stop wheezing and would be able to speak a sentence without gasping for air if I just took a hit off of breathing treatment I was giving to DQ.  The lightbulb finally went off and I realized, maybe I need to see a doctor. I left the doctor's office after a shot of steroids, a breathing treatment, four prescriptions, and a valuable lesson.  Yup. I was fairly sick.

The unexpected lesson from all of this: the doctor barely had her stethoscope on my back when she said "You sound just like DQ.  You sound terrible."  She went on to say this is how DQ is all of the time. But really, DQ is probably worse because my oxygen saturations were higher sick than hers are normally. I've been miserable this week. My lungs hurt and because of the difficulty I have with breathing, it is always on my mind. I feel like I have to yell at people to project my voice due to lack of oxygen. I've been grumpier for it to.  Yet, this is how my precious, smiley, happy, loving life more than anyone else I know, baby always feels.  And still, she takes the bright side. I've always marveled at that, but I couldn't understand.  I still can't really understand, but she truly is amazing in every possible way.  My doctor and I discussed this today as well. Logically, we know DQ has never known different (except feeling worse), but still, she has always been happy and full of life.

Today, I learned why my daughter is so special. I always knew she lived her life to the fullest, but now I know what that truly means. Living life to the fullest isn't only about appreciating what is available to you and doing what is good and noble. It isn't only about grasping opportunities when they come your way or making those opportunities happen. It isn't only about the experiences.  It isn't only in loving with your entire being and giving of your soul. Its about doing all of those things while carrying a mountain of trouble on your back and never letting it take the smile from your face.  My daughter is truly an inspiration.

Friday, May 13, 2011

Spring Reminiscing

This time of year always makes me reminisce about college and time spent with my sorority sisters. I don't know why this time of year in particular reminds me. It's not like we had a ton of sunny, spring-type weather there. We were frozen and usually digging out of snow. There always seemed to be clouds overhead. Yet, there is something about this spring weather that makes me think of college. Perhaps spring brings me back to the excitement we all would feel when spring would arrive in the great white north. It would be 40 degrees, but there'd be people in shorts because the sun was out and it wasn't snowing any more. Perhaps it's just because some of my favorite memories--the bonding moments in my life--seemed to have happened on nights just like tonight. This post is for all of my sisters wherever you are. I miss you and love you all for making me who I am.
Spring 2006. I believe this was pizza and Savannah night (was that the name of the show?)
If you asked most of the women from my pledge class and those who pledged the same year to name one of the single best nights, it would have been during spring term finals 1996. I remember the feeling of the night even though it was 15 years ago. (I can't believe it was 15 years ago!) We sat in the middle of the woods, by a small lake created by a damn. Lake Superior lay on the other side of the road, a distance away, but there (it was always there). There was a bonfire and logs. We all sat around talking, laughing, drinking, and telling stories. I can't remember the specific discussion, but I remember feeling like that was one of the nights that would stick with me always. So far, that remains true. I can still feel the connection that I felt that night.

(I also remember that there were about 5 of us who planned to camp out through the night. We had our tents and sleeping bags. What we didn't realize we didn't have until the last set of friends was leaving in a small vehicle, was that we had no way back to campus. Everyone expected to use my car, but someone had let all of the air out of the tires earlier that day and I hadn't brought it. I expected to use another friend's car. They didn't bring it. We were stuck in the middle of the nowhere and this was before cell phones! Luckily, our last drunk friend to leave with a not so nice sober driver came through for us and found someone the next morning to drive back out and pick us up.)

Spring also meant Greek Games, which was always a fun bonding experience. I remember a specific Greek Games where a very good friend came back to visit after graduating and bought some of us tattoos.  Was that the same games where I was thrown into Lake Superior? I don't remember specifically.

There were plenty of nights sitting on porches and roofs, talking and drinking. The memories of Senior Walk, skinny dipping, and sitting on the deck at a local bar. I clearly remember sitting on picnic benches outside of the union, chalking, and taking my dog for a walk along the portage.  Great Easter celebrations, with a potluck and lots of fun (too much at times).

Some of my favorite memories are from long drives to nowhere. Inevitably, my car would breakdown, but before then, there would be things to explore, such as waterfalls, new lakes, or interesting trails. 

But what sticks out most from all of these things, is the conversations and feeling like I belonged. It was a time of great change in my life. I didn't know who I was, where I was headed, nor what I would or could do. But there was no question of who my friends were and how important they were to me or I to them. I'm very proud of the fact that most of those same women are friends with me still. I may not talk with them frequently or even know if they are married with children, but I know if I were with them again, it would feel like home.

Tuesday, May 10, 2011

Too Much

I had an interesting conversation today regarding signing with a child.

Let me say this straight out: I believe teaching the Dancing Queen American Sign Language was one of the very best decisions I have ever made. Purchasing the Signing Time Videos was one of the best purchases ever. Hands down, no question, our lives all got easier when DQ learned to sign. We saw the lightbulb go off in her head the very first time we popped in "It's Baby Signing Time". (We had tried signing with her before the video, but for her, music was the key.  Not surprising from my music-centered kid.)  At 18 months, she went from being a frustrated toddler (even though she wasn't toddling yet) to being able to communicate her wants and needs to us in an intelligible manner. The change was remarkable.

At 2 years old, she was evaluated by her speech therapist with the verbal ability of a nine month old, but she could sign and was communicating.  At that time, when we were struggling to keep DQ alive, we were just happy she could tell us what was happening and what she wanted or needed. 

And in the last year, DQ's vocabulary exploded. She went from basically non-verbal to completely verbal almost over night. Her growth was remarkable. I attribute most of that to the signing. Even though DQ wasn't verbal, we still treated as if she was. We taught her manners. We talked to her as we would any child her age. Instead of only verbal though, we used signs as well. For instance, if DQ were to belch, she was instructed to say "excuse me" and sign it. Well, she couldn't verbalize, but she could sign. Signing was never done as an alternative to verbal speech, but as an additional tool that worked.  As of DQ's last speech evaluation two months ago, she was verbally speaking over age level. It is a remarkable achievement that I think was aided by signing.

Today, I was part of a discussion in which a speech therapist told a worried mom that it would be wrong for her to teach her non-verbal child sign language because it would prevent the absolute earliest possible verbal speech. I can't argue with that. I don't have any idea if DQ would have verbalized earlier if she hadn't signed, but I do take issue with the idea that the goal should be to have the absolute earliest verbal speech.

At what cost to the family and the child should anyone suggest that obtaining the earliest verbal speech possible is the only goal? I know in my family, DQ wasn't about to start verbalizing any time soon. Changing therapy techniques may have worked, but not as quickly as signing. DQ needed her hearing fixed to be able to take that next step. Beyond that, she had to figure out how to work her mouth. She simply didn't do that well (for speech or eating or drinking!) If we had waited for only verbal speech, DQ would have been frustrated and screaming more for much longer. That would have added strain to our family at a time when we were beyond stressed because she was facing so many other life-threatening issues.

Isn't it too much when a therapist/doctor/specialist takes their own specialist interest and makes it the only goal? I find it completely irresponsible for a speech therapist to tell a worried mother of a non-verbal child that signing was a bad choice without taking into consideration the full picture. What are your thoughts?

Sunday, May 8, 2011

Mother's Day

This is what Mother's Day is all about.
Happy Mother's Day!

Thursday, May 5, 2011

My Mother's Days

On my first Mother's Day as a mother, I was five months pregnant. I felt like my life was just beginning. I was excited. I was scared. I was beyond happy. Best of all, the Editor and her family were visiting us and we got to spend time with all of them.
The Mad Scientist on my first Mother's Day with our nephews.
My second Mother's Day was stressful at first because we couldn't get reservations, so the Mad Scientist sat at the restaurant holding a table for 6 by himself for an hour before I came with baby TRex. Then the 3 of us sat for another hour waiting for my parents and grandma to show up.  All the while, we received the evil eye from the wait staff and others. In the end, we enjoyed the time together.
Me holding TRex for my grandma on my second Mother's Day.
My third Mother's Day was a joyous day. The Dancing Queen had been born two months earlier. My family had been torn apart for two months. TRex was 17 months old and couldn't fathom what a sister was, let alone a sister he had never met. The Mad Scientist and I were constantly torn between home with TRex and the hospital with the Dancing Queen. We had watched her live off a ventilator for a month. We had gone through her first heart catheterization, her first major heart surgery, her second heart catheterization. We saw her improve and then get desperately ill again.  But, the Thursday before Mother's Day, our sweet girl was released from the hospital and came home. It was the best Mother's Day gift ever. We were a family, all together.
TRex meeting DQ for the first time, just before my third Mother's Day.
My fourth Mother's Day was spent with the family again at home.  Just as the year prior, the Dancing Queen had just had surgery. We spent three weeks split between home with TRex and the hospital with DQ. It was harder because TRex knew his sister by then. He took it very hard when she was gone. He didn't understand why the doctors had to fix DQ's heart. (He did think they used a hammer to do so.) DQ was miserable. She was intubated for over a week. We were not allowed to talk to her or touch her because she would struggle to get to us, fighting the vent and possibly hurting herself. All I wanted to do was comfort my baby and I wasn't even allowed to hold her hand. But, luckily enough, the Dancing Queen was released from the hospital the week before Mother's Day.
TRex and DQ on my fourth Mother's Day.
My fifth Mother's Day is one of the days burned in my memory. At this time last year, DQ was a very sick little girl. She was in heart failure and each breath was a lot of work for her. She used oxygen at night to help her poor heart and lungs get a break. The week before Mother's Day, the Dancing Queen was very sick and had to be rushed to the ER on oxygen. She was so bad that she was almost intubated. The culprit had been a high fever caused by a virus. Once the fever was gone, she was back to her then normal.  She was released fairly quickly and by the Wednesday before Mother's Day, she was totally like herself again.  During dinner on Mother's Day, DQ almost fell asleep in her food and turned blue on us. We put on her pulse ox and her oxygen saturations were in the 70s to 80s, way too low for her at the time. We had to put her on oxygen and put her to bed. She spiked a fever of 105+ and we couldn't stabilize her. We increased the oxygen as high as we could go at home and it wasn't enough, she still had trouble breathing. The Mad Scientist grabbed the portable oxygen and rushed her to the ER. I was left home alone with TRex on Mother's Day, wondering whether my baby would make it through the night. I cried myself to sleep.
DQ in the hospital last year around Mother's Day.
For my sixth Mother's Day, I just want to relax and enjoy my family. No drama.

I hope all of you mothers enjoy your day and everyone is able to do something wonderful for your own mother, even if she is no longer here with you to enjoy it.

Wednesday, May 4, 2011

I'm a Believer

I grew up in the suburbs of Detroit. We didn't go down there frequently. We rarely drove farther than half an hour's radius during the weekdays and on the weekends, we traveled up north or were playing with my cousins. We didn't have a lot of money, so going to the city was not anything that we did.

Of course, my mom took us to a Tiger game. I remember my grandma taking the Editor and I to the RenCen for lunch and eating in the rotating restaurant at the top (it didn't rotate fast, but enough that when you went to the bathroom, your seat was in a different place when you came back).  I remember one trip to the Eastern Market with my cousins as a tween--the first time that I ate pistachios and string cheese.  I recall maybe half a dozen trips to theaters downtown for concerts and plays.  A trip or two to Greektown and Trapper's Alley. A hockey game at the Joe.  Trips to Cobo Hall for the Auto Show, the circus, and going to see the 90210 cast when I was in high school.

It just wasn't a common event for us to come downtown and unthinkable to go anywhere else in the city. But, that didn't stop us from feeling like Detroit was who we were. I was oblivious to the racial tensions between the city and the suburbs. Nobody ever told me about the riots. It wasn't until a couple of years ago that I knew my mother rode through downtown in the midst of the riots on a return trip from visiting her aunt. How scary that must have been for my grandparents to drive their teenage daughter through the violence. I've never asked my mother what she felt at that time or even what she knew. I really ought to. I was shielded from a lot of it.

I didn't know how dangerous the city was, nor that Devil's Night was not common everywhere. I thought it was normal that people burned down the city the night before Halloween. How would I know different?

Then, the people of Detroit started to reclaim their city in earnest around the same time that my eyes started opening.  Things like Angel's Night were born. The Casino's came and with that new hotels and restaurants.  And I grew up and started listening to the news.

I also left and had no intention of ever going back. I didn't think Detroit or Michigan had anything to offer me. I even took (and passed) the New York bar exam upon graduation from law school. I applied for jobs in NYC and DC.

Then it hit me like a ton of bricks. I wanted to go home. There was no place was quite like Michigan. No place like Metro-Detroit.  Detroit had problems, but my heart was there.  Where else can you find a collection of local diners that specialize in greek food and chili dogs?  Where else is the home to the Big Three? The birth of the American middle class? Where else can you find people with the heart and determination of Metro-Detroit? The love for professional sports even with out winning? The history and the future? No where, but here.

I was offered a job in a firm downtown. I accepted. My dad was not happy. He didn't feel it was safe for me to be downtown. (In his defense, he had been carjacked in a bad part of the city, a couple of years before I started working downtown.)

I have been working in downtown Detroit since the fall of 2002. I love it. I admit that I don't get to see a ton of the city, but I've discovered more and more through the years. I am not blind to the city scape that at times resembles a hockey player's smile, but improvements continue. Detroit still has its problems. It has a lot of work to go to make it great again, but it is on its way. I love Detroit. I love working here. I love looking out my window and seeing Canada across the river. I love energy of the people I meet in the city and the excitement so many have for its revival. While I still live in the suburbs, I still consider myself a Detroiter. I'm excited about the future of this city and proud to be part of it. I'm a believer.

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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