Tuesday, July 13, 2010


I am finding out that there is so much more to this heart defect than I could have ever imagined. I've found some great blogs with great information about the long term care of children and adults with Congenital Heart Defects. It's great to be informed, but sometimes it is isolating and discouraging.

Our lives are changed forever. We will forever be interested in all things CHD, and Hypoplastic Left Heart Syndrome. We will forever be interested in the newest medical developments and research of medical procedures. We will forever be listening very carefully about insurance issues, medical advancements, and new laws. This has become our new normal.

This new normal sometimes feels very isolating. I don't expect family and friends to be as interested in the research as we are. They aren't living what we are living. They don't have to think about this new normal every day of their lives. They don't understand what our future may hold, and how new advancements and laws could affect our family in more ways than one. They don't even have to fully understand this heart defect.

I look around at the relationships around me- our parents, our siblings, our church family, daycare, etc. I grieve at the fact that life goes on, and it goes on without us. (Our life will go on as well, just differently than most) I will be in a hospital for 4-6 weeks with a sick baby- life will go on. My kids will be pulled out of daycare and we have to be very careful about going out in public places between the 1st and 2nd surgeries- life will go on. We will have frequent visits to Indianapolis for cario visits, surgeries, etc. - life will go on. Selfishly, I don't want to be forgotten, I don't want to be left out, I don't want my friendships to change. I don't want to feel disconnected or different at church or with our family and friends- but those things are sure to happen. I want life to continue on as it has for the past few years. But that is all going to change- and life will go on.

We will make do. We will also continue on as the rest of life goes on. This sense of newness will one day be normal.  It's just a lot of change, overwhelming change, and quite honestly, I'm terrified of it. I don't want this heart defect to define us as a family, but I also want to be as informed as I can about what our future holds. I want Joshua to have the best life and the best care possible.

It's just overwhelming some times, and I feel alone in it all.


Stefenie said...

You are not alone. As isolating as CHD tries to make us feel we are never truly alone. There are so many of us out there....ALL going through the exact same thing.

It is hard watching as the rest of the world carries on around you. I know that feeling all too well. It is as if you are stuck in the land that time forgot....frozen in time the day your child is diagnosed. Everyone around you continues on....goes to work....has more babies....goes on wonderful family vacations....all while you sit and pray in a hospital room.

I feel for you so much. I have been on this journey for almost four years now and honestly there are moments where I feel like it just happened. However, I know the incredible joy I feel when I look into my little guy's eyes. He is a miracle and despite everything I have had to endure because of him I am so very thankful for it all. I can't imagine for one second what my life would be like without him in it. He is worth every tear I have shed, the pain I have felt and the sacrifices I've made.

I know that you will feel that way too when you hold that precious baby in your arms. Yes, you will have moments of sadness but you will find there will be more happy tears shed than sad ones. {{{HUG}}}

lmpd0617 said...

Know that you are not alone. I understand your fears of the "new normal" and think its completely reasonable since we all struggle with that at the beginning. I can assure you Post-Norwood and facing down the Glenn that you and your family will find a comfortable place somewhere between your old and new lives.

I am not going to lie, there are those friends and family that cannot comprehend or do not want to understand the magnitude of what you're going through, but more often than not I have been pleasantly surprised. Once Josh comes along you will go into survival mode and a lot of the worrying that you've had time to do right now will get pushed out of your head.

You will find other heart moms & families at the hospital that you will forever be bonded with in a deeper way than some family & friends because you share all the same fears, hopes, dreams and aspirations. You have other heart families that read your blog even now before Josh has arrived that are rooting for you and here every step of the way.

Hang in there Mama, you're only a few short weeks from meeting your little boy! You will love deeper, have more patience and be a stronger woman than you ever thought possible.

Heart Hugs,

Monica Rafie said...

Jill, I understand your feelings. And this may actually get worse before it gets better b/c so many people really don't understand that this is never really over for our kids - the surgeries don't "fix" it - hard for people to grasp. But you know what, at each juncture, you are stronger. The lonliness will not be the defining "feeling" around this experience, you'll see!!

Still, I want to ask is there a heart group thru St V's or even Riley that you can look into? There will be times when you feel you don't need support, but in those times you can be another parent's support.

We did not have a group (which absolutely is mind-blowing to me, considering where we live), but I do think that the early months would have gone a bit better for us. The other time that I really felt I needed support was right around the fontan . .. "Okay, surgeries are done, but what is next . . .???"

Sending you prayers!

Jenny Lincoln said...

I know how you're feeling Jill. I know how isolating it can feel sometimes. Your friends and families will try and do the best they can to understand but they will never be able to fully "get it". The good thing is you have gained so many new heart friends who do get it. It's so nice to have other people who know exactly what you're talking about to connect with.
While getting a prenatal diagnosis is a godsend it also give you more time to worry and think. and worry and think and worry and think... Once Josh gets here you will be so busy you won't have time to worry and think about how life is going on around you still. You will be too busy watching a true miracle unfold. Not everyone can say they've seen that. God chooses heart parents for a reason. He knows you and your husband can handle it. We are ALWAYS here as a support to you. Hang in there~ just a couple more weeks until you get to see his sweet face!
heart hugs,

Kristine said...

Can totally relate. All my relationships changed. Also found I have trouble being around people not interested in CHD for long periods of time. I need to talk about it and also of course Cora. I've heard other moms that feel the same as you. One place I've found for support is Facebook, lots of CHD moms there. You might want to either make your main account one to add CHD moms, or come up with a second account for just CHD people. It's a huge community there. I'm at http://www.facebook.com/kristinebritemccormick if you decide to go that route. Some people say they really benefit from the support groups. I'm here for you. Always. <3

mom2lo said...

Girl, this post (in my opinion) expresses the thoughts and feelings of EVERY heart mom out there! I know I definitely identify with it! I'm going to link to your post from my blog because you seriously expressed exactly what I was feeling before Chase was born. Friends and family have no idea what we are truly experiencing, and most of them have no desire to try to understand. It IS lonely but always remember there are many other heart moms out there going through the same things and we are all here to support each other through this journey!

God bless you and your sweet family!

Christine said...

Yes, absolutely! I have a friend who keeps making all these plans and telling me how it will be for me based on how it is for her healthy robust 6 month old and no matter how often I remind her of the CHD she discounts it and continues to make plans I can't be part of no matter how much she wants me to be... My prep for childbirth includes ensuring the OB, NICU, Ped Card and Pediatrician are all on the same page... it is just different than worrying about whether or not they put the kid on me before whisking him off for tests (though I worry about that too!) *sigh* It gets very lonely sometimes... but you help.. A LOT!

Carla Sue said...

Jill. I cannot ever say that I understand what you're feeling. But I can understand why you're feeling the way you are. And I wish I could love you enough that you didn't feel so lonely. And that you didn't feel the fear of being lonely.

I may be detering from some of the above comments, but want to stress my point. I may not understand, but I am more than willing to listen and love and try to learn what you endure as you face it. It's one thing to lean on other heart families and use the internet to connect with them, but sometimes, face to face is necessary and sometimes, you need real people.

Make sure that as you take this new path that God is leading you on, you use it to show God's blessings to ALL people. Make sure that you do not forget that there are people here that love you and support you, despite your situation. We were here before we knew Joshua, before we knew of his condition, and we are still here now. Just don't neglect us non-heart people. :)

I love you. I love Shane and Caleb and Hannah. And I love Joshua as well. As always, you all are in my prayers.

nabrissa said...

yes dido, most of what carla said!!! don't isolate yourself in the world of only heart moms and families...we may not fully be able to relate but some of us still want to hear about what is going on heart related things too...we don't mind at all... we love love love you!!! we miss you soooo much, you and shane and the little ones....i'm SOOOO sad i won't get to meet Joshua right away (you best believe i'll come back to see that little munchkin though! i have to meet the little guy, he's like family in some ways; i've prayed and cried so much over him, you all, and he's been reason for so much praise and joy already... don't forget about us who have been there from the get go!!! :) i know some of us are not being as understanding but don't put us all in the same category...i don't think you will but it is easy to do, so just beware!! :) i love love love you!!! i'm sorry i can't be near you!!! In a perfect world, the u.s would be 5 minutes away, and so i could still be here in Senegal, and still come over for movie nights and impromptu dinners and what have you...i miss you!!!! (ps; i looooooooved the hannan story! it sooooo melted my heart!!!)

The Real Life of a Red Head said...

Nabrissa and Carla-

You guys are so right. I know I need to make a conscious effort to depend on the friends who were there from the get go. The hard part about that is that I don't want to be an emotional burden. Sometimes I feel like some of this stuff is so heavy and it takes so much out of me- the last thing I want to do is drag someone else into this world.

I know there are some of you who truely do want to carry this burden with me, but there are others who really don't quite know what to do with it all (some have flat out told me they really don't want to know or learn- I have to respect their honesty).

That is just where I need to depend on those who are willing to get their "hands dirty." There are many of you out there and I'm beyond grateful. Please don't discount yourselves and your role in our journey. You guys have been an amazing support for me and you will continue to be.

This post was not directly related to the heart community, it was meant for me to get my feelings of loneliness and isolation out. It just so happened that the first responses that I got were all from heart mamas. It felt good to know that my feelings are not crazy and that others have been there.

Love you guys!

Stephanie Quintero said...

I have never experienced this! But you are not alone! We are all praying for you!

Amy Bennett said...

Hi Jill! I'm a fellow heart mom who linked over here from Kathy's blog. My 5 month old son Bodie has HLHS and it's been a trip. Much more complicated than I could have imagined, but SO worth it. All of your feelings are totally normal - and you'll have good days where you won't feel any of those feelings - and bad days where that's all you can feel. But you'll get through it. Us fellow heart moms are here for you as well. Welcome to the club!

-- Amy

Stephanie Quintero said...

You are never alone.

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