Strength That Few Have

The following is a piece that I wrote shortly after Lynnea's death; it was originally published in ParentWise:Austin magazine in the May 2011 Mother's Day issue.

Strength That Few Have

I held her in my arms in the rocking chair gently rocking back and forth; the weight of her body putting my arm to sleep as I sang her a lullaby of my own making.  She opened her eyes for a moment to look at me; then she gasped as her lungs filled with fluid, and she was gone.  I knew as I rocked her that this would be the last time that I would ever rock my baby to sleep; I knew that this was goodbye; I knew when I began rocking her that she would die in my arms.  

Before I had children of my own, I thought I understood what it meant to be Mommy; I thought I knew that there would be tough choices to make, that there would be certain things I would have to give up, and that it would take a lot of strength and courage to be the best Mom I could be.  Other moms had tried to describe it to me, but the truth is that the amount of strength and courage that it takes to be a mom – even on a good day – is unfathomable until you have children of your own; having a child with any sort of special needs multiplies the need for that strength even more.  Before Lynnea was born, I, of course, never could have imagined that after only 20 short months with my child I would have to hold her in my arms knowing that I was rocking her to sleep for the very last time.  Her lifetime was filled with moments that constantly challenged my ideas about what it meant to be Mommy. 

I remember taking Lynnea to the ER for the first time.  She was seven days old.  Someone handed me a small stuffed teddy bear; I stood there silently holding it, watching as doctors and nurses frantically rushed around my baby doing all kinds of horrific things to her.  I overheard their conversations, but at the time I wasn’t yet fluent in “doctor speak” so it was like listening to a foreign language with the occasional word or phrase sounding familiar.  I heard the phrase “heart murmur” being thrown around, and moments later a doctor informed us, “We think there is something wrong with her heart.  We are not equipped to take care of her here.  We need to send her to a hospital with a NICU.  Which NICU do you want us to send her to?”  

After making the first of many snap decisions about the medical care my daughter would receive, I watched as she was taken to another room so that they could try to place a breathing tube.  Ten minutes later a nurse told us that, “The doctors are having a really hard time intubating her.  You need to come now to be with her.”  This was doctor speak that I understood: “You need to be with her now” clearly translated to “We don’t think she’s going to make it and you should come to say your goodbyes now.”  This was the first time in Lynnea’s life that we were “told” that she wasn’t expected to make it through the night (which, for the record, isn’t something that gets easier to hear no matter how many times you hear it).  

Very early the next morning we met with a cardiologist for the first time.  I listened as intently as I could in my panicked and sleep-deprived state as she explained how a normal heart functions; she drew a picture as she spoke to make it easier to understand.  Then I listened as she began listing off the abnormalities that had been found with Lynnea’s heart.  The list went on and on, and I remember wondering to myself somewhere in the middle whether or not there was anything “right” with Lynnea’s heart.  It turned out that Lynnea had a severe complex congenital heart defect known as hypoplastic left heart syndrome (HLHS), which on a very basic level, meant that she was trying to survive with half of a heart. Lynnea fought an uphill battle from that moment on, with one thing after another not going according to the doctors’ plans. 

This meant many long hospital stays. During these stays, I lived with Lynnea in the hospital, and our older daughter, Ashlyn, lived with my parents. In order to try to compensate for this division of my time and attention, my parents brought Ashlyn to the hospital to visit nearly every day, and once a week when no one else was available to babysit for Ashlyn during the day while my parents and husband worked, she would spend the day with me at the hospital.  Entertaining an almost-2-year-old in the hospital is challenging to say the least – certainly not the ideal setting for childcare – and keeping Ashlyn happy was made even harder by the fact that Lynnea remained in the Pediatric ICU because she was very unstable.  Thursdays were my day with Ashlyn, and March 5, 2009, happened to be a Thursday.  It also happened to be a day that again redefined my ideas about exactly how challenging parenting can be at times.

After spending an hour-and-a-half trying to convince her to take a nap in the family lounge without any success, Ashlyn begged to go to the hospital playroom to play for a while.  This sounded like a good idea, but I insisted that we go to Lynnea’s room to check on her first. I walked into Lynnea’s hospital room and was surprised to see a group of doctors gathered around her bed.  I looked at my watch to confirm that it was indeed too early for afternoon rounds.  I continued to look around the room and try to assess what was going on while Ashlyn asked me when we were going to go to the playroom.  The nurse came over to me and calmly explained, “Lynnea’s EKG was doing some strange things.  Fortunately, the cardiologist was in the room when it started happening.  Now we’re just trying to figure out what her heart is doing and trying to stabilize her again.”  I nodded to the nurse as Ashlyn again asked if it was time to go play a little less patiently than the time before.  I sat down in the rocking chair and explained to Ashlyn that Mommy needed to stay with Lynnea to talk to the doctors for a while.  I handed her a small toy from in my purse and she managed to entertain herself with it for a time.  As I sat there, I noticed that the crash cart and emergency intubation cart were parked there beside my rocking chair; I knew that these things belonged in the hallway, and the fact that they were at Lynnea’s bedside was a very bad sign, but I couldn’t risk alarming Ashlyn, so I sat there calmly with her on my lap desperately hoping that my parents would come soon to take her home with them for the evening.  

Within a few moments it became clear that Lynnea was not stabilizing, and the decision was made to place a breathing tube.  Since I had no desire to watch as my baby endured an emergency intubation, and this was something that Ashlyn certainly didn’t need to witness, we moved to the hallway, bringing the rocking chair with us, sitting right outside the door.  By this time, Ashlyn had stopped asking to go to the playroom and began dozing off in my arms as I rocked her.  

There was a steady stream of doctors heading into Lynnea’s room, and I could overhear the attending doctor at the nurses’ station making phone calls to everyone on the cardiology team with a sense of urgency that made me uneasy, “…Yes, you need to come now, we need you here.  It’s Lynnea.”  It didn’t take long before I saw every member of the cardiology team filter into Lynnea’s room one by one, and as the door would open and close I would catch a glimpse of them frantically bustling about at her bedside as she went into cardiac arrest.  I didn’t believe that my day could get any worse.  And then Ashlyn woke up and proceeded to throw up on me.  There I sat, helpless as my baby fought for her life; helpless as my toddler puked all over me.  

Having moments like that continued throughout Lynnea’s life; each one making me a little bit stronger, while at the same time breaking my heart a little bit more.  There aren’t words to describe most of them – there’s no way to accurately capture how it feels to watch your child cry silent tears while her eyes beg you to make the hurting stop and to take the breathing tube out of her throat; or, what it’s like to sit at your baby’s bedside for 72 days wishing for the chance to snuggle, but only being able to hold her hand and stroke her hair; or, how hard it is to watch your child lying naked and lifeless on a hospital bed, while a machine pumps blood in as fast as she is bleeding it out; or, knowing as you ride in the back of an ambulance that, this time, your baby isn’t going to come home with you again – no, those things cannot really be shared.

A few days before Lynnea’s fifth heart surgery her surgeon stopped by her hospital room to talk to me about the procedure.  We talked for a bit about what the surgery would entail.  By this time, I was having a hard time trying to constantly stay optimistic about her prognosis.  In an attempt to try to be encouraging, he said to me, “You know, I’ve known a lot of parents of these HLHS kids, and I’m often impressed by them.  They are phenomenal individuals – you are a phenomenal individual – with strength that few have.  I would never want to parent a child with this condition.”  I sighed heavily and after a long pause I replied quietly, “But what if I don’t want to be a phenomenal individual – what if I just want to be a Mom?”  

I realize that there is a lot of irony in my reply to the surgeon; being a mom generally does mean being a phenomenal individual and becoming a person beyond any expectations we may have had at the beginning of things.  As parents, we never know what is going to be expected of us, and it is impossible to know how strong we really are until the need for that strength arises, and then, somehow, against all odds, it is there; we are strong, and we make it through whatever comes.    

So Far, So Good

While this week is filled with moments of missing Lynnea more than usual, and wishing that she were here to celebrate her fifth birthday with us, we received some happy news yesterday.  Lynnea's newest little sister (due to arrive in March) appears to be completely healthy so far.  Next month we will have a fetal echo done just to make sure that her heart is continuing to grow and develop properly, but so far, everything looks completely normal and healthy.  Ashlyn is excited to welcome a new baby sister into our family, and Aiyana, well, she still gives me looks of skepticism when I tell her that there is a baby growing in my tummy, but I'm sure she'll enjoy having a little sister as well.

End of the School Year

Ashlyn had a busy week to finish the school year.  On Tuesday she went on a field trip to go rollerskating.  This was the first time she had ever gone skating and she was very worried that she wouldn't be able to skate.  Well, she did just fine and ended up winning at Limbo.  She enjoyed the slushy that she received as a prize.

On Tuesday evening we attended the end-of-the-year award ceremony at her school.  She received the "Detail Expert" award because she "always has some extra details to add to everything that is taught."  She was proud of her award.

Wednesday was her last day of kindergarten.  She was excited about cleaning her desk with shaving cream, and she was happy to be done with the school year. 

On Thursday we went to the Water Park of America (courtesy of HopeKids) to celebrate the beginning of summer vacation.  Ashlyn and Aiyana both had lots of fun playing in the water all afternoon. 

Yesterday we took Ashlyn and Aiyana to the public library for the first time.  Ashlyn decided that it is a wonderful place to go and is looking forward to making weekly visits throughout the summer.

Little Miss Attitude

Aiyana has been a part of our lives now for 17 months, and she has quickly grown from being our baby to being a very independent toddler with a bit of an attitude.  In the last week or so she has decided that she wants to do everything herself and she puts up quite a stink if anyone tries to help her most of the time.  Her vocabulary has also grown, though it is still difficult to understand all of the words that she tries to say.  Her favorite words (ranking right up there with "cookie") are "Walmart" (though it sounds more like "Maw-Mar" when she says it), and "Netflix."  She is also quickly learning how to go up and down the stairs (up is easier than down, but she's starting to get the hang of both), and likes to go outside to play with Ashlyn.

Celebrating Ashlyn's 6th Birthday

It has been a busy weekend celebrating Easter and Ashlyn's birthday.  On Thursday, we celebrated Ashlyn's 6th birthday together as a family.  She requested going out to dinner at McDonald's (one with a PlayPlace, of course), so we had dinner together with Grandma and Grandpa at McDonald's.  As one of Ashlyn's birthday gifts, we also agreed to take her to Half-Price Books and let her spend $20 on books.  She was very excited about this, and thoroughly enjoyed picking out eight new books for herself (she received some other books as gifts as well, so she'll have new reading material for a while). 

Today we had a tea party-themed birthday party with family and friends at our house.  This included special Birthday Tea and Lemon Tarts rather than a birthday cake because Ashlyn decided that a birthday tea party must include lemon tarts (we also had raspberry and blueberry tarts, and chocolate cupcakes).  She had a fun time playing with her friends and drinking tea.

Congenital Heart Defect Awareness Week 2013

It's Congenital Heart Defect (CHD) Awareness Week (Feb. 7-14)...so what?  Anyone on any form of social media knows that it's always some sort of "awareness week."  This constant barrage of "awareness" seems to bring more apathy than anything else.  Too often what I see being posted on Facebook to bring awareness to any sort of cause gives very little information about the cause (thus not doing a very good job of raising any real awareness), and is generally passed over as spam.  And yet, here I am, writing about CHD Awareness, and sharing it on Facebook. 

As most people reading this already know, my daughter, Lynnea, was born with a congenital heart defect and passed away 20 months later.  This is why I feel obligated to write about heart defects during this week, but I hope that I can say something that is truly valuable rather than just adding to the awareness spam.  The problem is that, unless your baby (or a baby that you are close to) is born with a heart defect, most of what I have to say isn't going to mean much.  It doesn't really matter to most people that 1 in 100 babies is born with a CHD, or that about 10% of those born with a CHD won't live to see their first birthday.  Honestly, until I had a baby with a heart defect, facts and figures like that didn't really matter -- it's the kind of thing I would have read and thought "wow, that's kind of sad" and then moved on with my day without giving it another thought.  That type of "awareness" isn't really useful. 

So, as I was thinking about what to write to raise awareness for this particular cause, I thought about whether or not there was anything anyone could have told me before Lynnea was born that I might have cared about, or that would have mattered in the long run.  Yes, I really wish someone had told me about pulse oximetry.  Pulse oximetry is a way of detecting how much oxygen is in your blood; this sounds like some technical medical thing that is probably really complicated, but it's not -- many people have seen it on TV or experienced it in the hospital themselves -- it's that little clothespin-like thing with the red light that is stuck on the end of the finger of adults.  It doesn't hurt, it's non-invasive, and like I said, it's actually a really common thing used in adult patients.  Pulse oximetry for babies doesn't use the clothespin-like thing, instead, it is a bandaid-like thing because the clothespin thing is too big to put on a baby's finger or toe, but it works the same, and it's still painless and non-invasive (and, in case anyone is wondering, very inexpensive).  Anyway, I really, really wish that someone had told me that pulse oximetry can (and should) be used on babies in the hospital shortly after birth.  If I had known this, I could have asked for it when Lynnea looked a little blue and her breathing didn't seem quite right before we were discharged from the hospital after she was born.  I didn't know anything about pulse oximetry, so when I brought up my concerns to the nurses about her color and about her breathing, I accepted it when they said she was probably fine and that I was just worrying too much.  A simple pulse ox test would have made me feel better (or, in Lynnea's case, would have shown that something was indeed very wrong with her and she would have gotten the medical attention she needed much, much sooner).  That's the kind of awareness that would have been helpful.  There are over 40 different types of congenital heart defects, and the ones that require immediate attention after birth can nearly always be detected with pulse oximetry; not all hospitals use this basic screening on all newborns, but anyone can ask to have it done, even if it is not standard. 

While there is very little known about the causes of most CHDs, it is generally agreed upon in the medical community that early diagnosis (like with many conditions and illnesses) makes a big difference in the outcomes.  

The Homestead Act of 1862 and a Mouth full of Molars

Ashlyn had to complete a project for her school's History Fair.  The theme had to be about a Turning Point in history.  She did her project on The Homestead Act of 1862: Pioneer Life, and created a diorama that showed Almonzo and Laura Wilder's homestead claim and tree claim in South Dakota.  Her project won a blue ribbon.

Here is what she wrote for her project:
Explain why you became interested in researching your topic.
"I was interested in Laura Ingalls Wilder, and she was a pioneer girl, so I decided to pick this for my topic to learn more about pioneers."
List three things that you learned about your topic.
1. "I learned that the government said that there was free land that people could have."
2. "To get that free land, the people had to first sign the paperwork and live on it for five years and either farm on it or plant 100 trees on it, and of course, they had to build a building on it."
3. "I learned that some people left the big cities to go and get that free land."

Aiyana has also been busy lately...busy getting more teeth.  She now has four molars (that I know of...I have quit checking for new teeth because she bites really hard), which would explain why she has been so crabby the past couple of weeks. 

Happy Birthday, Aiyana!

It's hard to believe that Aiyana has been a part of our family for a whole year already.  She has grown up so fast!  In the past month she has added the words "Papa" (Grandpa), and "Nana" (Grandma) to her vocabulary and she's been trying really hard to say "ball." 

Today for her birthday she woke up and opened presents (now that she's an old pro at it after having lots of practice over the past few days) and enjoyed playing with the wrapping paper.  She had lunch with Mommy, Daddy and Ashlyn before Daddy had to leave for work.  She was unimpressed with her cupcake...I think she would have been happier if it had been chocolate cake.  Grandma and Grandpa came to take her out to dinner to her favorite restaurant, Pizza Ranch.  She rivaled Ashlyn with the amount that she ate.  Overall, she had a fun day.

Merry Christmas

We had a wonderful time celebrating Christmas together as a family this year.  The past several years Corey has had to work on Christmas Eve and Christmas Day, so for him to have both days off this year was really special.  Ashlyn enjoyed being a part of the Sunday School Christmas program at church.  Both girls enjoyed opening gifts, though it took Aiyana a while to get the hang of things.  Ashlyn was more than willing to help her out and show her how things are done.  In the end, Aiyana decided that the bubble wrap that came in some of the boxes was the best present around.

Another Month Older

Today Aiyana is 11 months old.  During this last month she has learned how to walk and is now almost up to a run.  Pretty soon she'll be chasing Ashlyn around the house.  She has also added the words "Mama," "Hi," "Wa-wa," (water) and "up" to her vocabulary.  She has decided that during some meals, baby food is unacceptable and demands to eat the same "num" as the rest of us. 

Happy Birthday, Lynnea

I admit, I never really know what to write on Lynnea's birthday, and today is no different.  She would have turned four today.  It's a hard day; on one hand, I really want to celebrate what a wonderful day it was when she was born, and how incredibly happy I am that she was a part of my life even if it was for such a short time, but on the other hand, it's impossible not to be really, really sad that today I'm not having a birthday party watching her open gifts and blow out candles on the cupcakes that we baked for her.  There's nothing that can really make this day any easier, but it is nice to remember some of the favorite moments that we had with her.  So, here's my Lynnea memory for today:

This morning when I was rocking Aiyana in the rocking chair before her morning nap, she kept leaning forward and then flinging herself backward against me.  This reminded me of when Lynnea used to do this.  We called it "Kaboom" and, I admit that it's not really one of my favorite baby games, but Lynnea thought it was a lot of fun.  I remember specifically the time after one of her heart caths when she thought it was an appropriate time to play "Kaboom."  See, after a heart cath, it is important to keep still for a few hours in order to prevent bleeding.  For Lynnea (and all babies/small children) this meant spending a few hours in the hospital crib strapped to a board to keep her from moving her legs.  Well, Lynnea hated this, and after this particular heart cath, the doctors and nurses thought that she might be happier if she were snuggling in my lap instead of strapped to the board.  I agreed that holding her might make her happier.  It did.  But it didn't keep her still.  As soon as she got out of the crib and into my arms in the rocking chair, she decided that nothing would be more fun than playing "Kaboom."  I ignored her the first few times she flung herself backward hoping that if I ignored her she would stop.  She didn't stop.  Since I didn't think this was what the doctors and nurses had in mind when the let her out of bed, I told her that she had to stop playing "Kaboom."  She reluctantly stopped and immediately found other ways to occupy herself: she set diligently to work trying to remove all of the medical equipment that was attached to her.  She removed her pulse oximeter several times (I kept putting it back on her toe, and she kept pulling it off as fast as I could put it back on), she pulled her nasal cannula out of her nose, she tried to remove her IVs and tugged desperately at the Velcro on the blood pressure cuff.  And, of course, she just laughed at me when I told her "No, no."

That's one of my favorite Lynnea memories because, despite the situation, she really was just being a typical naughty toddler.  I loved seeing her do "normal" things like that even though there was nothing normal about what was going on in her life. 

Aiyana is 10 Months Old!

Aiyana is looking and acting less like a baby and more like a toddler every day.  She easily walks around furniture and has no problem going from one piece of furniture to the next.  She also stands on her own for a little while.  She has a vocabulary of three words: "Da-da" "Num-num" and "Nigh-night."  She is especially fond of "Num-num!"  While she still eats baby food, she has decided that table foods are wonderful and enjoys eating whatever the rest of us are having whenever we are willing to share with her.  Fortunately, she has a big sister who is willing to share snacks with her whenever she asks. 

We Have a 9 Month Old

Aiyana is in a big hurry to grow up!  She can walk around furniture and she puts every little crumb she finds in her mouth.  She has eight teeth now -- the better to bite with!  We've had many conversations about whether or not it is OK to chew on socks while people are wearing them...we're not always in agreement on this one.  She has outgrown her sleep sacks, so now she gets to wear big girl pajamas.  She's not really convinced that this is an improvement, and makes it challenging to get her dressed after her nightly bath. 

The First Day of Kindergarten

Today was Ashlyn's first day of Kindergarten.  She was excited to go and had a really great day.  She made some new friends, played outside for TWO recesses (that was very exciting!), ate lunch that she brought from home, and listened when the teacher read stories.  She told me that she is really glad that she gets to go back tomorrow. 

8 Months Old Already!

Today Aiyana is 8 months old.  She's a busy girl these days.  She finally mastered crawling and has now decided that she desperately wants to walk.  She pulls herself up to standing in her crib and at the baby gate on the stairs.  She also has five teeth now and enjoys eating Cookie Crisp cereal and cut up bananas. 

Aiyana is 7 Months Old

Another month has flown by and Aiyana is now seven months old.  She now has three teeth and is addicted to Gerber Graduate puffs.  Her main goal in life is still to learn to crawl.  She is very close to crawling, but can't quite seem to coordinate her efforts to get herself to move forward. 

A Trip to Como

On Tuesday we spent some time at Como Zoo and Como Town thanks to HopeKids.  It was very warm outside, but both Ashlyn and Aiyana seemed to have fun anyway.  Ashlyn liked seeing the animals, but she liked the rides even better.  Aiyana loved watching all of the people and seeing all kinds of new things.  We had a picnic dinner before going home for the evening.

Two Years...

We sat around the table at lunch time.  Ashlyn happily chattered about the butterfly mask that she had made at Aunt Megan's house yesterday, and Aiyana drank water from her favorite sippy cup.  Most days, moments like this make me smile; I look at my two beautiful, healthy little girls and I know that I have a lot to be thankful for.  Most days.  And then there are days like today.  Today watching Aiyana drink from her favorite sippy cup, the small one with a pink top, it reminded me of how much Lynnea loved that cup.  It was Lynnea's cup.  Her favorite cup.  The one that we didn't dare leave the house without.  The one that she picked out herself at the dollar store one day with her favorite homecare nurse. 

I know that I should be happy with the family that I have, and I am, really, but sometimes it is hard not to think about that family that I should have had -- the family that had three amazing little girls that could have been the best of friends.  It still feels like there is a giant hole in the middle of my family, a hole where Lynnea is supposed to be; a hole that can't be filled.  It often makes me very sad that Aiyana will never have the opportunity to get to know her big sister, Lynnea.  It also make me sad to see how much of Lynnea's life Ashlyn has already forgotten; I am grateful that she has found a way to move on and seems to be a pretty well-adjusted five-year-old, but it is sad to watch her forget her little sister -- if this is how much she has forgotten on the second anniversary of Lynnea's death, how much more will she have forgotten by next year? Or five years from now?  Ten years?

Fortunately, even on days like today, there is still a great deal of comfort in knowing that Lynnea has no more owies in heaven.

Another Month...

Another month has flown by already.  Aiyana is six months old as of today.  She is growing up so fast!  She has now discovered that she can get where she wants to go by rolling over and over and over; of course, she hasn't given up on her dream of crawling (actually, deep down, I think she just wants to get up and run around like she sees Ashlyn doing all the time, but I'd like her to stay on the floor for a little bit longer...).  She tries so hard to crawl; she just can't quite figure out how to get her knees up under her and make herself go forward (and, there's nothing more frustrating than trying to move forward only to find yourself moving backwards, away from that toy/sock/something of Ashlyn's/etc. that you were trying so hard to get).  One of these days she'll figure it out.  She continues to love every flavor of baby food we offer her, and she now has two teeth (bottom front) to bite with (she thinks it's funny to bite you if you stick your fingers in her mouth, which, I suppose, is only fair). 

Ashlyn is also getting more and more grown up every day.  Last week she lost her first tooth.  She thought that was great.  She has another one that is wiggling and will probably go soon if she keeps pushing on it. 

Ashlyn's Garden

Last week, Ashlyn planted a garden in the backyard with some help from Grandma and Grandpa.  She planted Lettuce, Marigolds, Carrots, Asparagus Beans, White Beans, and Coleus.  Everyday she goes out and checks her garden to see what's growing.  Yesterday she was very excited that lots of little lettuce was starting to come up and one of her marigolds had come up. 

Ashlyn's garden last week right after planting it.

Ashlyn's garden today, 1 week after planting.