A Trip to the Children's Museum

Last week we went to the Minnesota Children's Museum for a HopeKids event.  Ashlyn was very excited about this -- she remembers when we went two years ago with Lynnea and has been asking to go there again ever since (we didn't make it last year because Corey had to work).  The first thing she wanted to do when we arrived was go and play in the bubbles, just like she had with Lynnea.  After that she had a fun time exploring most of the other exhibits in the museum.  It was fun to watch her get so excited, and we had a great evening out as a family.

Things Ashlyn is Thankful For...

Over the past week Ashlyn and I have had several conversations about things that she is thankful for.  Here is the list of things that she came up with:
She is thankful for her swimming pool, her pink car, Daddy -- especially when he helps her drive her pink car, her backyard, trees -- because they give her shade and help keep the air clean, Mommy, and Baby.

Lynnea's Birthday

Lynnea would have been three years old today.  In order to mark this occasion, Ashlyn and I baked cupcakes, just as we did last year.  I think this will be our yearly tradition. 

I thought that Lynnea's birthday this year would be easier than it was last year when her death was still so fresh in our minds, but this year wasn't really any easier.  This year the reality hit that every year her birthday will come, and every year she will not be here to celebrate it with us. 

We spent time today remembering her and some of the best moments that we had here with her.  While remembering her, of course, it is always impossible to only remember the best times; all of the suffering that she went through cannot be forgotten.  The comfort still comes from knowing that, this year for her birthday (and everyday), she doesn't have to hurt or suffer at all because she is in heaven where there are no more tears and no more owies.  I am happy that she gets to spend her birthdays in such a wonderful place, even though I miss her so much.

Fetal Echo

Today we went down to the U of M for a fetal echocardiogram.  We brought Ashlyn with us because she really wanted to see the new hospital.  One of our favorite echo techs did the scan for us.  The baby's heart looks perfect (and she has a beautiful aortic arch).  Ashlyn was very well behaved during the scan, and seemed to like getting to see the baby's heart beating.  Ashlyn also enjoyed playing in the waiting area and in the hospital lobby for a while. 

First Day of Preschool

Today Ashlyn started preschool.  She made a necklace out of Froot Loops, and said that there were lots of fun toys to play with.  She is looking forward to going back again next week.

A Day at the State Fair

On Monday, we spent the day at the State Fair.  The weather was beautiful, and it wasn't overly crowded, so it was a great day to go.  We didn't try any new foods this year, but instead stuck to ones that we've liked in the past.  This year Ashlyn enjoyed the deep fried alligator much more than she did last year (she ate nearly the whole batch without saving much for me or Corey).  She had fun going down the giant slide with Daddy, and riding the Merry-Go-Round with Grandpa.  She was a good little farm worker and appreciated her hard earned apple.  At the end of our day, we stopped to watch a show on one of the free stages, and Ashlyn was very excited when all of the kids in the audience were invited up on stage to dance at the end of the show. 

Level 2 Ultrasound

Today I went in for the level 2 ultrasound of the baby.  Unlike in my past pregnancies, this time gender wasn't the thing that I was most anxious to find out about, but rather the cardiac anatomy.  When I was pregnant with Ashlyn and Lynnea, we would often comment about whether we were going to have a "pink baby, or a blue baby," with the reference always being about the gender.  After having Lynnea, who was literally a blue baby because of the way her cardiac anatomy functioned, this time the speculation had a different meaning.  Fortunately, the baby's heart appears to have four chambers, all the correct size, and there were no cardiac defects that could be detected.  Everything else looked good too.  Of course, the baby was kind of a stinker during the scan -- when it was time to look at the heart, it moved so that it was hard to get a good look at the left side (eventually it moved back into a good position); when it was time to look at its face, it kept putting its hand over it; and, when we wanted to find out its gender, it kept its legs crossed (though we did also manage to eventually sneak a peek).  So, this time, when it comes to color, the baby is pink in the cardiac sense, meaning that its blood all flows the way that it should, and it is also pink in terms of gender.  Yes, Ashlyn is pretty excited to have another little sister.  In a few weeks we'll go in for a fetal echocardiogram just to make sure that the baby's heart really is in good shape (because this gives an even better look at all of the structures of the heart than the level 2 ultrasound can), but at this point the odds of there being anything seriously wrong with it are very low.

Something Beautiful

"I wanna start it over, I wanna start again.  I want a new beginning, one without an end..."

Those are the opening lines to the song "Something Beautiful" by Newsboys, the first song in the photo montage that I put together for Lynnea's funeral last year (it's posted on here too if you follow the link marked "Lynnea's Story").  One year ago today, Lynnea received her new beginning, one without an end.  I will never forget the feeling of holding her in my arms rocking her that last time, knowing that it was time for her to go.  She opened her eyes for a moment to look at me, for one final goodbye, before she was taken from my arms into Jesus' arms in heaven. 

Today, it is hard not to think about all of the suffering that she endured during her short life, and how truly ready she was to not hurt anymore.  She was tired, she had suffered so much, and it was time for her to go.  She was and always will be something beautiful in my life, and I am glad that now, instead of experiencing all of the pain that life on earth brought for her, she is in heaven, living a perfect life that never ends.

Conversations Then and Now

One year ago today, Corey and I sat down in Lynnea's hospital room with three of her doctors and had one of the most difficult discussions that any parents could ever have to have regarding our child.  Lynnea had just proven to everyone that she could no longer handle the work of breathing on her own.  EEG and MRI results had shown that she had extensive brain damage after her episode of cardiac arrest.  There just weren't any options left for her.  So, the five of us had a lengthy conversation about when and how Lynnea would die.

Today we went to the U of M to meet with Dr. St. Louis to go over Lynnea's autopsy results.  Really, there was nothing particularly insightful about the findings: the loss of her left pulmonary veins was the primary reason that nothing more could be done for her.  In some ways, this conversation shared some commonalities with the conversation we had a year ago; in both cases, at the center of things was Lynnea's death.  It was a little strange to go to a clinic visit for Lynnea without having her along; it clearly felt like something was missing as we sat in the examining room waiting for the doctor to come in.  It was also a little hard to think about the fact that this really was the very last appointment that we will ever go to regarding Lynnea.  Fortunately, this year's conversation did not have the same heavy tone that last year's did; in fact, our time spent chit-chatting with Dr. St. Louis was quite pleasant, and it was good to get to have this conversation with someone that had played such an important role in Lynnea's life.

Vacation Bible School

This week Ashlyn went to Vacation Bible School.  She enjoyed learning Bible stories (she especially liked learning about baby Moses), making crafts, eating snacks, singing songs, and playing with her friends.  Although she enjoyed the songs that she learned this week, in the middle of the week she complained about the fact that "didn't like singing because she didn't know the words, and they wouldn't give her a song sheet with the words on it like they gave to the bigger kids."  (4-year-olds are not typically given song sheets when they sing because most of them don't know how to read.)  I told her that she could learn the words by listening to the other kids sing them, and eventually she decided that this would do, but she still thought it was unfair that she didn't get to read the words herself.

A Sneak Peek

Ashlyn has had some important news that she has been sharing with people over the past few weeks.  For those of you that haven't had the chance to talk to her lately, I've decided that I would share her news for her on here.  This is the announcement that she has been making to just about anyone who will listen: "We're going to get a new baby at our house around Christmas time."  She is very excited about this, and is happy that she will get to be a big sister again.

Officially, the due date is January 8, 2012, but since my children don't seem to like to wait around until their due dates to be born (Ashlyn was born at 39 weeks, Lynnea at 38 weeks), I figured telling Ashlyn that the baby should be here "around Christmas" was a pretty safe bet.  On Monday I went in for an early ultrasound, mostly just to check my dates and to make sure everything is OK.  The doctors are treating this pregnancy as slightly high risk because of our history of having a baby with a heart defect.  Recent research has shown that the specific type of heart defect that Lynnea had appears to have a strong genetic component to it rather than being caused by environmental factors.  So, this baby is at a significantly higher risk than the general population of also having some sort of heart defect (though not necessarily the exact same defect as Lynnea, and not necessarily anything nearly as severe as Lynnea).  In August we will have a level 2 ultrasound and a fetal echocardiogram to check for any cardiac abnormalities.  Monday's ultrasound showed that everything seems to be going fine so far, but that my due date might be a bit off.  The ultrasound showed a due date of January 3 rather than January 8.  We haven't talked to the doctor yet to find out if they want to officially change the due date or not (typically, if the ultrasound due date is more than five days different than the calculated due date, then the ultrasound due date is the one that the doctors will use...since our dates are exactly five days different, it's impossible to know which date the doctor will choose to use). 

On Monday I also went in to have an MRI done.  This was not pregnancy related (in fact, the only reason I hadn't had one done sooner is because I am pregnant and it is unknown whether or not an MRI causes any harm to the fetus).  I have been having some vision problems since the end of March; specifically, I suddenly lost a significant amount of vision in my left eye at that time.  My vision hasn't improved at all since then (in fact, during my last exam it had gotten a little worse, though this could be due to the pregnancy because vision changes are fairly common during pregnancy), and after running several tests, the neuro-ophthalmologist determined that the problem is not with my macula or retina, which left the only other probable source of the problem being with my optic nerve.  The good news is that the MRI did not show any obvious signs of a brain tumor (yes, that was one thing that they were looking for), but it did show that there is some inflammation of my optic nerve, and that's what is causing my vision loss.  This condition is known as Optic Neuritis.  Beyond that, there was not a lot that they could tell from the MRI because the MRI had to be done without the use of any contrast dye (because contrast dye is not OK for Baby).  There is a chance that my vision will improve over time (though the fact that it hasn't improved at all yet isn't really a good sign).  Although sometimes Optic Neuritis occurs without any specific cause that can be found, it is often an early sign of Multiple Sclerosis.  Without doing an MRI with contrast dye, it is impossible to determine how likely it is that MS is or is not the cause in my case.  I will have bloodwork done to rule out a few other possibilities like Lupus and Lyme Disease, though I don't have any other symptoms of either of those, so it is pretty unlikely that they are the cause. 

Eleven Months

Lynnea has been gone for eleven months, and we all still have moments when we miss her very much.

Last weekend Ashlyn found a dead bird outside in our backyard.  She ran in the house in tears, and sat in my lap crying for nearly an hour.  As I held her, she told me about all of the things that the bird would never do again: it would never sing again, it would never fly again, it would never eat or breathe again, etc.  Eventually she calmed down and went outside again.  I told her that we could bury the bird after Daddy came home from work.  I watched her as she went back outside.  She examined the bird on the ground, and then she carefully picked it up and carried it up to her treehouse.  Part of me was appalled when I saw this, but chose not to stop her.  When she came back inside I asked her about this.  She informed me that she had taken the bird to her treehouse so that it wouldn't be alone until we buried it.  After we buried the bird, she didn't mention it again, and I thought that was the end of it.

Later in the week, while I was tucking her into bed one night, she asked me about Lynnea.  She asked me about when Lynnea died.  I explained to her that I held Lynnea in my arms rocking her in the rocking chair when she died.  Ashlyn asked if she fell asleep while I was rocking her.  I explained to her that it was kind of like Lynnea went to sleep, except that she stopped breathing and wasn't alive anymore.  Ashlyn replied in an accusing tone, "Did you try to wake her up?  How did you know she was really dead?  Are you sure she wasn't just sleeping?"  I told her that it was different than if she had just been sleeping, and that I was sure she was really dead.  She sighed and then asked what I did with her after she died.  So, I told her that I held her for a while longer in the rocking chair, and then I put her back in her hospital crib.  Ashlyn was appalled at this and angrily said to me, "Mommy, why did you put her back in her crib?!  She wasn't sleeping, she was dead, you shouldn't have put her there!  You should have kept holding her.  You should have stayed with her.  You shouldn't have left her there at the hospital all by herself."  And then she cried.  I let her cry knowing that there was no way to explain to her in a way that she would understand why I had to leave Lynnea's body in the hospital.  When she calmed down, she told me that she really misses Lynnea.  I reminded her that Lynnea is in heaven and that she is very happy there.  Ashlyn nodded and said, "Yeah, I know."  When she said her bedtime prayers, she wanted to say a special prayer beyond our usual "Now I Lay Me."  This was her prayer: "Dear Jesus, Thank you for taking care of my little sister Lynnea in heaven for me.  Please give her lots of hugs and play with her because she will like that.  I want to go to heaven too, but please let me grow up to be really old first.  I love you.  Amen."

Happy Anniversary

Ten Months

We have spent ten months here now without Lynnea.  On Tuesday Corey and I had an unexpected opportunity to tour the new U of M Amplatz Children's Hospital.  The move in to the new hospital took place last Saturday.  Throughout Lynnea's entire life, we had been hearing about this hospital, watching it be built, anxiously awaiting its opening.  Though it is a little disappointing that Lynnea isn't here to see it, and to experience how much more patient/family friendly it is compared to the old hospital, it was nice to finally get a chance to see how everything turned out after waiting for it for so long.  I think Lynnea would have liked it (I know Ashlyn would have liked it...she's pretty jealous that Mommy and Daddy went to visit without her, and now she keeps asking when we'll take her to go see it), and I'm glad that we took the opportunity to tour it.

I Know that My Redeemer Lives

"For I know that my Redeemer lives, and at the last he will stand upon the earth.  And after my skin has been thus destroyed, yet in my flesh I shall see God, whom I shall see for myself, and my eyes shall behold, and not another."  Job 19: 25-27

These verses are the basis for the common Easter hymn, "I Know That My Redeemer Lives."  We sing the words as a proclamation of Jesus' resurrection, His atonement for our sins, and the assurance that we have of life everlasting with Him.  I find it intriguing that these verses are not found in the New Testament spoken by Mary or one of the disciples after finding the empty tomb on Easter morning, or after seeing Christ for themselves when He appeared to them, but instead they are found in the Old Testament, spoken by Job to his friends after he has suffered the loss of his wealth, his children, and his own health.  He speaks these words with confidence while enduring tremendous adversity in order to paint a clear picture that he has of his hope in salvation and everlasting life.  His testimony, especially under these circumstances, is an excellent reminder of just how much hope and comfort our Redeemer brings.  Job is able to look beyond his time on earth, and his earthly suffering to see what awaits him and all believers when his physical life has ended.

Job's proclamation brings great comfort as I think about Lynnea and all of the suffering that she endured during her short time here with us on earth, and all of the glory that she is now experiencing in heaven because of Christ's death and resurrection.  It is immensely comforting to know that, no matter how much suffering this life brings, ultimately there is not only an end to that suffering, but unimaginable glory and joy waiting for us.  He is risen.  He is risen indeed.  Hallelujah.

Pictures of Ashlyn

Today we went over to Megan's apartment for a little photo shoot with Ashlyn.  Here are just a few of the pictures Megan took today (completely unedited here -- I'll post more after she gets a chance to play with them in PhotoShop).  This morning before heading over there, I told Ashlyn that auntie Megan wanted to take some pictures of her with her new camera.  Ashlyn's response was, "Yes, I'm going to have my pictures taken because I am the most beautiful girl in the world."  And oh so humble too...

It Takes a Village...

I have a favor to ask all of you that are on Facebook.  Please go to the following link (it's a link to a note that I wrote) It Takes a Village... and leave a comment on the note.  The parenting website MomSquawk.com is having a contest to help them choose a few new bloggers to write for them on a consistent basis, which is something I would enjoy doing.  They requested that potential bloggers write a short piece for on their Facebook page, and the winner will be determined based on the number of comments that each note receives.  So, please help me start a discussion on my note. Thank you everyone!

Nine Months

It has been nine months since we said good-bye to Lynnea.  It was hard today sitting in the examining room with the pediatrician for Ashlyn's 4-year-old well-child check-up.  This was our first time back there since Lynnea died.  Ashlyn enjoyed the check-up, though I think she also sensed that it was a little strange to be there without Lynnea (Ashlyn came along for many of Lynnea's visits), and she reminisced some about what it was like when we used to take Lynnea to see the pediatrician, as we sat in the same examining room that we were in for all of Lynnea's visits.  The pediatrician teared up a little at the end of our visit as we talked a little bit about how life is now without Lynnea here. 

Life keeps moving forward, but I still miss her; we all do.  In order to use some of the experiences that we had with Lynnea to benefit others, I have been working on a few books to help families that are faced with having hospitalized children, or the loss of a child.  I have started a publishing company called Heart of Hope Publishing and will be publishing my first book in the near future titled But I Still Miss You.  It is a book for young children to help them cope with the loss of a sibling or other close relative.  Other books will hopefully soon follow. 

Celebrating Ashlyn's Birthday

Four years ago today, at 1:04pm, Ashlyn Grace entered this world, and I held her in my arms for the first time.  She was beautiful; she was perfect.  She's still beautiful, and she's still perfect. 
On Saturday we began her birthday celebration with a birthday party with some of her friends and family.  She had a great time playing with her friends and blowing out the candles on her Hello Kitty birthday cake that her Aunt Megan was kind enough to make for her.  Today we celebrated by going to McDonald's for lunch and letting her play in the play place for a while.  We don't do this very often, so this was a special treat for her.  This afternoon she had another birthday party with family members that couldn't make it to the party on Saturday.  She requested that we have "birthday soup" so that's what we had for dinner at her party (and some hotdogs to go along with it...she ate the hotdog and only tasted the soup).  We had icecream cake and she again got to blow out her candle (this was a bit of a novelty considering that the past two years her birthdays were spent at the hospital with Lynnea and we weren't allowed to light candles in the family room for her).  She had a lot of fun.  She received many gifts, including a cowgirl outfit (various pieces given by different people...I'm impressed at how coordinated it is) that looks adorable on her.  Here are some pictures from her parties, and her in her cowgirl outfit.

When I Grow Up...

Ashlyn has been very opinionated lately about what she wants to be when she grows up (which, according to her, is when she is 10 years old).  For a while she wanted to be a doctor or a nurse, and then she wanted to be a firefighter and an artist.  Lately, she has decided that she wants to be a Mommy and a Chef at Denny's.  She is determined that being a Chef at Denny's would be wonderful because then she would get to cook scrambled eggs, and she wants to be a Mommy because then she would be in charge of her babies and they would have to follow her rules.

Interesting Grammar

As Ashlyn's language development continues, I've noticed that she comes up with some interesting verb conjugations.  (Leave it to me, the English major, to notice things like this...)  She handles regular verbs just fine, easily using the correct verb tense in pretty much every situation, but the irregular verbs still throw her off a bit most of the time.  My favorite word that she uses all the time lately is "sawn" which seems to be a form of the verb "to see."  I think it is a combination between the past tense, "saw," and the past perfect tense, "have seen."  She uses it in sentences all the time, sometimes as "sawn" and sometimes "have sawn."  For example, "Mommy, I sawn your book before -- it was on the couch."  Or, "I have sawn this episode of Word World before."  Obviously, I can't resist correcting her every time with the hope that eventually she'll understand that "sawn" isn't really a word...for now, when I correct her, she usually just gives me a completely confused look and continues talking about whatever it was that she was saying before I interrupted her to try give her a lesson in grammar that she's not interested in.

8 Months

Today marks eight months since Lynnea died, though my thoughts today have been on other moments.  Three years ago at some point during the first week in March (I don't remember the exact date), we learned that Lynnea would enter our lives.  Of course, we didn't know anything about her yet at the time -- we only knew that a baby was coming in about nine months, and that the baby would be a blessing in our lives.  And, every moment with her was a blessing.

Two years ago, on March 5, 2009, Lynnea coded.  I remember sitting in a rocking chair in the hallway in the PICU outside the door to Lynnea's room with Ashlyn sitting on my lap while Lynnea went into cardiac arrest, and Ashlyn proceeded to throw up all over me.  As a parent, I have never felt more helpless than I did in that moment: helpless as my baby fought for her life; helpless as my toddler puked all over me.

Last year, on March 5, Lynnea was still in the PICU after having heart surgery on Feb. 8.  She was still on the ventilator, still running fevers, still not doing well at all.  As hard as it was to sit there and watch her suffer that day, my heart was breaking for Riley's family because they had lost their son only four days earlier, and the PICU was not the same without him.  It also served as a harsh reminder that not all children get to go home from the PICU -- sometimes children die, and the reality hit me that, if it could happen to Riley, it could just as easily happen to Lynnea.

I am grateful that this year I did not spend March 5th sitting in the PICU watching my baby suffer.  Yes, I wish that she were still here with me.  Yes, I miss her in a way that words cannot even begin to describe.  Yes, the tears still fall often when I think about how quiet my house is without her here.  But there is also a tremendous amount of relief knowing that she is pain-free in heaven, and that my days of sitting by helplessly as I watch her suffer are over.

Practicing Her Nursing Skills

Since Grandma Maureen broke her leg nearly two weeks ago, Ashlyn has had the opportunity to put her skills as a nurse to the test.  She does a good job keeping Grandma occupied so she doesn't get too bored, and she is very gentle when she does her assessments of the broken leg.  She also remembers to ask Grandma if her leg hurts and offers her "I-B-Potion" (Ibuprofen) when Grandma says that her leg hurts.  Sometimes, though, she gets fed up with doing helpful little tasks like filling up Grandma's glass of water...she does it reluctantly after giving us a very frustrated sigh as though she is completely overworked. 

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.