Little Yellow Riding Hood

Ashlyn has a habit of adding creative twists to the fairy tales and nursery rhymes that she knows, and this evening I think she came up with my favorite one yet.  After her bath every night, I wrap her up in a towel to dry her off; our towels are off-white (though, if you ask her, she'll say they're yellow), and every night when I do this, she says to me, "Mommy, I'm Little Yellow Riding Hood, who are you?"  And I reply by telling her which fairy tale or nursery rhyme character that I am and we act out an interaction between these two characters.  Well, tonight she told me who I should be (sometimes she makes "suggestions").  She wanted me to be "The Giant."  To clarify, I asked her which giant, and she explained that I should be the Giant from Jack and the Beanstalk.  I agreed to this.  Then she went on to explain, "Mommy, you're the Giant, and just so you know, you are Little Yellow Riding Hood's uncle.  That makes me your niece.  Tonight you are a nice Giant because Jack isn't around for you to get mad at, and I am here and I want to play.  Since you are a nice Giant, and you like me because I am your favorite niece, this will be fun."  So, there you have it: The Giant from Jack and the Beanstalk is actually Little Yellow Riding Hood's uncle.  (I haven't determined yet if Little Yellow Riding Hood and Little Red Riding Hood are the same person, or if they are just close relatives...I'll have to ask Ashlyn about that.)

Valentine's Day

Yesterday we celebrated Valentine's Day at home together as a family: a quiet dinner with Corey and Ashlyn, which included sparkling grape juice to make it "special."  I know, that probably doesn't sound all that exciting, or romantic, and, I guess on the surface it wasn't.  But, looking back at how I spent Valentine's Day the past two years -- in the hospital with Lynnea in rough shape (last year she was 6 days post-op and they still hadn't managed to get her chest closed yet...) -- this peaceful day together at home was special.  Ashlyn was full of "I love you" statements all day long coupled with lots of spontaneous hugs.  She was excited about the red stuffed animal that Corey had picked out for her, and happily gave me and Corey gifts that she had helped pick out.  Overall, it was a very nice Valentine's Day.

1 in 100

Throughout Lynnea's battle with hypoplastic left heart syndrome, I wrote about what she was going through, giving a glimpse into what it is like to have a child with a congenital heart defect.  Along the way, I met and became friends with many other families faced with the same struggle that we were going through with Lynnea because, unfortunately, "heart babies" are all too common.  With Lynnea, we were not lucky enough to have her heart defect diagnosed before she was born, or even within the first 24 hours of life when the first signs and symptoms began to show themselves, and I still struggle sometimes with the frustration of knowing that the simple act of putting an oximeter probe around her newborn foot for a few minutes would have alerted us and her doctor to the fact that something was very wrong, and possibly could have meant a better prognosis for her.  There are many other parents, families, and health care providers out there that are working to make pulse oximetry part of the standard newborn screening process to help diagnose congenital heart defects early on in order to give these kids the best chance possible of survival.  A family that we met in the hospital one of the times we were there with Lynnea has a website full of great information on heart defects and the importance of advocacy and awareness.
http://1in100.org/finally-ready-to-screen-for-the-most-prevalent-birth-defect/

7 Months

It has been seven months since Lynnea passed away.  Since February is American Heart Month, and Feb. 7-14 is Congenital Heart Defect Awareness week, I have decided to share some statistics about heart defects:

• Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD (almost 1% of all children born each year!).
• Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.
• This year almost 40,000 babies will be born with a congenital heart defect.
• This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.
• In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.
• From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!  

Personally, I feel that "awareness" is about more than just knowing the statistical data, but that's a good place to start.  Being aware of how many families are faced with the kinds of challenges and heartbreak that we went through with Lynnea is being aware of how many families need the same kind of loving support network that helped us get through the challenges that we were faced with.  Keep all of the other heart families in your thoughts and prayers as each of them struggle with impossible choices, long hospital stays, and all too often saying their final goodbyes to their children.

More Pages in the Lynnea Book

Ashlyn decided to color a couple more pictures for in her Lynnea Book this week.  This is what she told me to write about this picture in her book: "This is a picture of me and Lynnea watching Little Einsteins together.  Lynnea liked Rocket the best.  We both liked the "pat, pat -- blast off!" part."

For this picture, Ashlyn told me to write: "This is Lynnea playing with her baby doll.  She liked to make it rattle.  She liked to give it hugs."  

Ashlyn added heart stickers to both of her pictures "because hearts mean 'I love you' and Lynnea loved me."  I think she has been missing her sister a lot lately; we all have.

Don't Underestimate Her

I don't know if I keep setting my expectations too low, but Ashlyn keeps exceeding my expectations of her.  Maybe I just don't want to admit that she is as "grown up" as she is.  This week there have been several moments where she has surprised me with her abilities.  All week she has been requesting to play Wii Fit Plus by herself.  She has her own Mii and I've been letting her play whichever games or exercises or yoga poses that she chooses too, even though I don't expect her to be able to do many of them successfully.  Well, it turns out that she's a whole lot better at many of them than I ever would have thought she would be.  It has been a lot of fun to see how proud of herself she is when she is able to complete these activities.  She has also been very excited about doing jigsaw puzzles this week.  I keep thinking that she's going to need my help with some of them, but she easily completes the 24 piece puzzles unassisted.  She completed one yesterday and asked me to come see it when she had finished; when I saw it, I told her that she was getting so grown up to be able to do puzzles all by herself.  Her response was, "yeah, and I'm really smart too.  That's why I can do all these puzzles by myself."  Ah, I love the humility.

Moose and Muffins

Last night Ashlyn and I went with Grandma and Grandpa to another HopeKids event.  We went to see the play If You Give a Moose a Muffin at Stages Theater in Hopkins.  It was a lot of fun.  Ashlyn was on the edge of her seat loving every minute of it.  Today we baked some muffins of our own, but she and I agreed that we probably shouldn't share them with any moose.

Enjoying Christmas Gifts

Ashlyn has had a lot of fun playing with all of the new toys that she received as Christmas gifts.  She has been busy dressing up in her new dress-up clothes, she has been coloring with her new art supplies, and she has been playing with her new dollhouse a lot.  It is good to see her having fun with all of her new things.

Six Months

Yesterday was six months since Lynnea died (I tried to update last night, but Blogger wouldn't let me).  As a family we are moving forward with our lives even without her here (I prefer the phrase "moving forward" to "moving on").  We've managed to create a comfortable daily routine, and most of the time things are pretty good.  There are still some really tough moments as reminders of what we lost hits hard.  Earlier this week I finally went ahead and put Lynnea's clothes into boxes and put them away.  It was difficult to see the outfits that she had worn during her last month at home and remember how much fun we had together, and the ones that she had worn in the hospital that had been modified to accommodate her IVs and remember how much suffering she went through, but even harder to see the brand new ones with tags still hanging on them because she hadn't grown into them yet.  But, ultimately, they're just clothes; whether they are hanging in the closet, sitting in a laundry basket in the living room, or folded up in boxes, doesn't change the fact that she will never wear them again because she doesn't need them anymore.  Whatever she's wearing in heaven is probably far cuter (and stain resistant) than anything she ever wore here. 

It's starting to hit Ashlyn that Lynnea really isn't coming back.  She burst into tears the other day because she "would never get to play with Lynnea on earth again."  Forever is starting to feel like a really long time.  She is also beginning to try to come to terms with her role as a sister.  She tried to tell me the other day that she used to be a sister, but now she's not a sister anymore because her sister isn't alive.  I tried to explain to her that she will always be a sister, even though Lynnea is gone.  She didn't believe me, and I didn't feel like arguing with her about it, but hopefully, she will eventually understand that being a sister is a permanent thing.

New Year

"And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, who has been given to us."  Romans 5:5

We enter into this new year remembering that there is always a reason to have hope, no matter what life brings.