Saturday, October 30, 2010

16 months and a change..

Wow! I haven't posted anything in a few weeks! That's very unlike me. My apologies... we have just been so busy!  I started a new job last month (that I LOVE, by the way) and I've been busier because of it.  I feel like the days are just flying by.  But I knew today couldn't go without a post... yep, you guessed it, it's the 30th.  So our Aly bear is officially 16 months old!!!  As with every month, I of course can't believe it.  How can my baby girl be rounding the corner of being a year and a half old?  She is really coming into her own now.  She is almost, almost walking.  She probably could but she still needs that comfort of a finger to lead the way.  And I am ok with this.  I am just soaking in all the crawling because once she starts walking, that will be it.  My baby will never crawl again (well, maybe, occasionally, but you know what I mean).  It's just another step to growing up so fast. As for language, Aly is really blooming with her words lately.  Her new favorite- "uhhhh ohhhhhhh" and I love it.  I laugh every time she says it because it is the cutest thing ever. :) She will attempt to repeat almost anything you ask her to and does a good job.  She still won't say "da-da".  She refers to daddy as "ga-ga".  Words she says on her own.... "ilk" (milk), "NOOO" (no translation needed), "go", "ap,ap" (when Dora is on and the map comes out), "up" (she told me this yesterday when she tried to get up for the day at 5:30. I walked in her room and she was standing there and smiled huge and screamed "UP"- I had to laugh :) ) "ore" (more) and of course, "mama"..... there are many more but those are the ones I can think of off the top of my head.  She officially loves her new daycare.  She doesn't even cry when I drop her off anymore (just as of this week) and when I pick her up, she's not nearly as excited to leave her friends as she used to be. We are so glad we found the new daycare we did.  Our last daycare was run by Jeremy's mom so we felt very comfortable having Aly's grandma doing her daycare.  It was scary to go out there and just find someone but we LOVE it and she loves it. So we're happy. :)
Something else that has been on my mind was a long long talk I had with a great friend recently.  We don't see each other much, but when we do we could talk for days and I love it.  I have been really struggling recently and I don't know what to do.  I think that every person is emotionally very different from the next, and one person can handle more (or less) than others.  I'm really struggling to understand what I can handle.  As most of you know, it has been a rough few weeks for the CHD world.  Really, really awful.  There has been so much loss recently and it is heartbreaking.  I can't even begin to imagine what these families are going through.  I cry for them, I pray for them, I truly ache for the pain that they are enduring.  It just hits so close to home.  I have tried to be a pro active heart mom.  I want to be there for people as a support.  I seek out newly diagnosed parents, I am always looking for new blogs, or messages or message boards, I get emails from my blog and I do my very best to be supportive, informative and positive.  I do this because it means so much to me to have this support that I want to be able to have others feel that way.  But I don't know how much more I can handle.  I could probably count on one hand how many days have passed in the last six months that I didn't cry.  I am constantly, constantly obsessing over an awful guilt feeling I have that I get to have my daughter, and these families don't.  Whenever I get irritated or frustrated with Aly, I get so mad and upset with myself because there are parents who would love to be dealing with a toddler who just threw spaghetti all over their clean floor.  How dare  I get bothered by such menial things?
My friend pointed out to me that that is not a way to live.  Of course I am going to be sad for these families and it's healthy to feel for them but I can't feel bad that Aly is still here.  Another thing she pointed out that I had not realized was that my positive attitude I insisted that I myself and anyone who was around me have when it comes to Aly is disappearing.  I'm scared now.  Always. I used to be scared (of course) but sure.  I knew Aly was going to be okay. We were always always positive about everything.  Now I have let doubt and fear creep in.  And that is not fair to one person- ALY.  I can't keep living my life like this but I'm not sure  how to change it.  We talked and talked and talked about what changes I could make.  We talked about maybe not following any new blogs or not communicating with new parents as often now, just stay close with the families that I am already connected with.  But I don't know how I could do that.  I would NEVER EVER be able to not respond to someone who reaches out to me.  It's just not possible.  And I could never not be there for the families I am connected with now.  Even the ones who have experienced the greatest loss.  I see the titles of some of their blog entries that I know it will be one of the most heart wrenching things I have ever read and I take a deep breath and dive in.  I can't NOT read them.  I feel like it is out of respect of them and their childs memory to read them, because that's why they wrote it.  But I don't know if I can handle reading the details of my (and theirs, I'm sure) worst nightmare happening to someone else especially when it is so close to home. I know what the answer is.  I need to take a step back for a minute and regroup.  But I don't know how to do it.  I have grown to love many many of these families and have really bonded with many heart moms and I can't imagine my life without them (and I won't.  They have grown to be friends now).In fact, just yesterday I was emailing with a heart mom turned friend and our conversation had nothing to do with our babies hearts or health and it felt good.  We have a relationship outside of CHD and it's nice.  It's great to know that while we have each other and are there and truly understand when it comes to our children's hearts, we also can just be friends.  How do you get to a point where you can draw a line and say for my own sanity and self being and for what's best for my family I have to step back now? So, I guess, after all that, I still am at square one.  But I realize that something needs to change... but what?

Wednesday, October 6, 2010

What a terrible awful heartbreaking week in the world of CHD.  Rest in peace Joshua, Ewan, Alexander, Caleb, Doug, Kaitlin, Jessica, Brendan and Tim.  Please pray for these families. 


Daddy please don't look so sad, momma please don't cry.

Cause I'm in the arms of Jesus, and he sings me lullabies.

Please try not to question God, don't think he is unkind.

Don't think he sent me to you and then changed his mind.

You see I'm a special child, I am needed up above.

I'm the special gift you gave Him, a product of your love.

I'll always be there with you, so watch the sky at night.

Look for the brightest star and know that's my halo's brilliant light.

You'll see me in the morning frost that mists your window pane.

That's me in the summer showers, I'll be dancing in the rain.

When you feel a gentle breeze from a gentle wind that blows.

Know that it's me planting a kiss upon your nose.

When you see a child playing and your heart feels a tug,

Don't be sad mommy, that's just me giving your heart a hug.

So daddy don't looks so sad and momma please don't cry.

I'm in the arms of Jesus and he sings me lullabies
 
-Anonymous
 
 

Sunday, October 3, 2010

15 months and Cuddles from the Heart...

Our little Aly bear is actually 15 months old already! I can't believe it.  Just look how big she is getting!!


(and yes I know one day she is going to be so mad about the bathtub one. ;)  )

Aly had a 15 month check up and her weight was up 11 ounces from the cardiologist last week. How's that for confusing? She gained 3 ounces in two months and then 11 ounces in 8 days.  Huh.  So she is up to 18 lbs. 14 oz. and still hanging strong in the peanut category (5th percentile).  She is 29 1/2 inches (50th percentile). She is getting more fun everyday.  She has a few words that she uses all the time.   "Go" is her new favorite.  Especially for any sort of medical professional who tries to come anywhere near here.  When I put her coat on it's "go? go? go?"  Too cute.  We also have "ilk, ilk" (milk) on repeat when thirsty and the newest and all time favorite (of hers)... NO.  Which is always accompanied with a frantic side to side head shake just in case we don't get it.She LOVES to say it but HATES to hear it. ;)   She also says, "mama" and "bebe" (baby).  She's also started hugging and kissing, blowing kisses and waving "bye bye" at everyone.

Throughout both of Aly's hospitalizations we have been overwhelmed and completely touched by the surprising outreach of strangers. It seemed like almost everyday someone dropped off another stuffed animal, little toy, blanket or book for Aly.  We couldn't believe how people reached out and gave to complete strangers.  Anyone who has ever spent any amount of time in a hospital could probably tell you how freezing cold it always is. And hospital blankets aren't exactly what I would call warm and snuggly.  We so appreciated Aly having soft, cuddly, pretty blankets for her to cuddle with as she was recovering.  One of these amazing programs that provides blankets for the children in the hospital is Cuddles from the Heart. This program was started by Stefenie, super heart mom to Logan (yes Stefenie, I did it again.  She laughs when I refer to her as "super heart mom"- seriously though, she is. ) in Iowa in 2008.  Now two years later, it was spread to 12 states!  Last year was the first year that Michigan was a part of this program.  Here is the story of how it went.  What they are looking for is new store bought or homemade blankets.  Seeing as I have very very unfortunately do not have a crafty bone in my body our donations will be store bought.  Do you see these blankets?


So cute, right?  They were FOUR DOLLARS each.  That's it.  FOUR DOLLARS.  I have decided that every week when I go grocery shopping I will buy at least 3 of these blankets.  (They have baby-adult sizes for this price!) So, I spent an extra $12 this week and I know that these blankets are going to give a child who is in the hospital something cozy and warm to cuddle with.  For $12- 3 kids.  How great is that? So here is my challenge to all of you. Do you have $4 dollars? Why not take $4 and buy a blanket to brighten the day of a child whose day could really use to be brightened.  Being hospitalized is challenging for us as adults and parents but imagine how frustrating it would be to a child.  Imagine their excitement of getting a gift- a new fuzzy blanket- for no reason, as a total surprise. Imagine you could make a child in the hospital smile- even if just for a second when they receive their new gift.  That only cost you four dollars. Have I convinced you to participate yet? What you can do is buy (or make) a blanket and then let me know.  For all my local friends, I will even come pick them up from you and I will mail them in to be distributed in December at C.S. Mott Children's Hospital at U of M.  Last year they collected over 500 blankets!!!  The deadline is December 1, so you have plenty of time. Maybe you want to start collecting 1 a week when you're out for groceries too? So let me know when you need me to start pick ups. ;)