Thursday, December 29, 2011


So I had this really upbeat, happy-go-lucky Merry Christmas post all set to go up today and then something happened.  Something big happened to me today- it may not sound like much but it's a big step for me.

Today, for the very first time ever, I was able to answer someone who didn't know when they asked the "what's wrong with your daughter" question...


I know that may sound crazy but every time until today I find my voice cracking as I say the words until I get to the point that I have to stop speaking and take a few deep breaths to clear the tears from my eyes.  I try to always keep myself preoccupied when I am explaining it to someone.  It's not that I don't want to talk about it but it's that I cannot look people in the face and say it. STILL.  I don't know if it's harder for me to re-live as I explain how she was diagnosed and all she's been through or if it's that I can't handle the look on their face- first shock, followed by sympathy for all we've been through and then amazement by how well she is doing. Now don't get me wrong, I have NEVER had anyone react negatively or in a way that hurt my feelings- except for once.

 I will never forget this and neither will my friends that were sitting right there when it happened.  We still talk about it to this day.  My AMAZING friends and family put together the biggest garage sale I have ever seen about two weeks before Aly was born.  One of our friends made a big poster with our picture on it and explained that the fundraiser was to help us as we relocate for the birth of our daughter and a little about her condition.  A woman walked up to us at the table and asked how the baby was doing (she assumed she was already born).  We laughed a little and said she's doing good as I pointed at my belly where she was still safe and sound.  This woman seriously looked me right in the face and said, "My friends baby had that and it was awful and he died.  But good luck to you."  and walked away.  We all seriously sat shell shocked that she would say that me and I think all thinking "is she right?"  We had no idea. 

Ironically, I didn't cry then.  But when people ask me with genuine concern and interest... it gets me every time. 

So why not today? Why not anymore? Oddly enough, as I was sitting at my desk working, it hit me that I didn't cry.  AND THAT MADE ME CRY.  It was such a free feeling.  I feel like the fear is losing it's grip on me.  It's still there and part of it always will be holding tight to a corner of my heart that it pulls at when I have "those moments" but I am winning the battle.  I can finally say that.  I remember when I was pregnant reading a blog of a mom whose daughter was about 1 or so and she wrote that even on the best most normal days she always thought of her daughters heart a dozen times a day at least and I remember feeling so deflated reading that.  And then I lived that.  And then, a few weeks ago she updated that her daughter was doing well (she's 3 now) and that days go by that she doesn't even think about her heart other than at medication times.  That brought me full circle as I am following in her footsteps.  I'm not yet to the point where I don't think about it every day but it's definitely not every second of every day anymore. I didn't know this kind of normal life was possible for us- but it is, and we're doing it!

I am getting stronger. Every day.  I have rode the craziest roller coaster for the last two and half years- I've had the highest of high and lowest of lows and I finally feel.....settled. Content. Happy.  NORMAL.

So maybe next time someone asks me about Aly, I can do it again.  And maybe not even cry about it later.  ;)

I promise there will be a Christmas post of Aly in all her cuteness coming soon! Mommy just needed a journal-her-feelings blog post today. :)

Oh and P.S.- I posted all this about how great our life is and posted it before I even realized that Aly has a cardiology check up next week.  Old me would NEVER have "counted my chickens before they hatched" (so to speak) but new STRONGER ME..... is still gonna ask you to say a quick prayer and keep Aly in your thoughts next week for a stellar check up.  SIGH.. I'm getting there- I'm a work in progress, right? ;)


  1. I LOVE this post Jenny - and I can totally relate. It's hard not to get choked up when people ask about our kiddos special hearts and what their futures hold. But every day we get stronger - Aly Jean is so lucky to have you as her mommy. Can't wait to read your Christmas post and see Aly Christmas pics!!! love you!

  2. I can definitely relate to this post Jenny.  I finally....FIVE years later.....feel like I am in this peaceful (somewhat) place with Logan's CHD.  It is not something that I think about every second of every single day.  I have my moments but it seems like I have more moments where I don't think about it.  I am getting better abotu talking abotu it.  I still cannot talk about his entrie story, especially the beginning, without breakign down into a sobbing mess or needing to excuse myself from the conversation.  But to close friends and family I am able to talk about it.  We do get stronger each day because we have the strongest people we know as our children.  Their perfect happy little selves remind us that there is so much worth living for and so much happiness to come.

  3. thank you so much for this post. My daughter will be having her second heart surgery anytime this month. i was told yesterday that i should be getting the phone call soon. so as i was driving home yesterday with her i couldnt stop myself from crying. she is so strong and i am so weak. sometimes i feel like i will never be at peace and accept that this is my new normal. lots of hospital trips and stays. i always read blogs of other heart moms and they seem so strong. i wish i was more stronger like you. and thank you for this post. it gives me hope that i will one day be strong and be at peace with everything. =)

  4. Great post Jenny...It's good to hear that I am not the only one although I'm a guy and we're not supposed to cry, right? I cry about Evan quite a lot, especially with his second surgery coming up next week. I worry constantly about him and whether or not we'll have another Thanksgiving, another Christmas, etc with him. I even cry when I think about the hospital and all the great people there that helped us get to where we are. Some days are better than others but it's pretty rare that I tell someone about Evan without tearing up.

  5. I can totally relate to this post!   I can usually, well, for the most part, get through a large majority of Derrick's story if it's just one person I'm talking to.  If it's more than 1 person, forget it!  I'm a total basket case!  Shaky, red-faced, blabbering mess....It's such a crazy feeling, because if you're like me, you WANT to share their story, it's just so HARD to do because it's your baby!  And you re-live those moments every single time.

    I'm so glad you're at an almost normal place in life.  I can't wait to get the Fontan over with so we can get to that point.  Well...kind of.  You know!  :)

    Big hugs!

  6. Yay for you! This is s a big deal. I know the feeling. I still can't talk about Izzy's diagnosis or what she has been through without crying and I've been living it for over 4 years now.

    I'll be thinking of you all next week and hope you only get good news!