Welcome to our new world of CHD. It is to be truthful, everything you would imagine - I'm sad, I'm scared and I'm slowly getting over the shock of my new surroundings. But, I'm not alone - this path has many forms, some more rare than others (where Gwen fits in), but it is well worn, sad to say - you just wouldn't know about it unless you must.
There are all kinds of stories, and all are heart-breaking because it is not in any of us to be able watch a baby have to meet life in such a fashion without our heart being affected. My spirit is lifted by the many strong, amazing parents who've shared their stories online - and my heart has been touched by the sweet faces of these precious little fighters. As I said, there are all kinds of stories, each unique to the child who owns it, and all these shared stories offer comradeship and strength for this journey, long or short it may be.
Even as complex and rare as her condition appears to be, I know that there is much hope and we as her parents will always provide what we can, the best that we can, even as we understand that this situation is not in our hands - but to be there for her and love her is our only ability and only role. Believe me, I don't say that as a comforting thing to myself, as it really isn't at all comfortable to know, that that is all I can do for her.
I don't want to be here, I don't want this reality for Gwenyth. But, I am here, and I will only be okay, because I have to be okay for both my daughters and my husband. I must. I am not strong enough for this at all - so I am leaning on and relying on God to loan me His Grace and Strength to help me keep facing forward, much less moving forward.
There are overwhelming moments, because my heart is broken, and I'll move through them and come out again okay... I'm doing the only thing one can do in this new world especially (but all any of us really can do, we just don't see it as acutely) is to keep taking it one day and one step at a time - and I'll, since my heart is so broken, I'll wait till later to really, really let myself feel everything that is right there, waiting to be felt. But, I do take comfort from and garner strength from those before me, who also found themselves walking this path - to know someone else knows exactly how this feels, it helps.
Besides the internet, the organization "Mended Little Hearts" has a group that some amazing "heart mommies" just started up in November in Winchester (an hour north of here). I've gone to one meeting and met someone locally through its' facebook page who has a 9 year old with Truncus. I'm so grateful for this - I look forward to all the strength, wisdom and comfort these connections will bring.
Gwenyth is being cared for - so many little blessings make that glaring obvious along the way...and for these blessings, for God's hand, for those who are keeping Gwen in their prayers, I am thankful and humbled. More details to follow...as plans fall into place and we are temporarily "cocooned" as much as Gwen is...read on....
Yes. I'm just letting music and lyrics (that don't honestly relate based on what the writer was probably thinking) but, they relate ...
May 14th post... I found this in my drafts. I guess I intended to sit on it and edit it or wait and see about posting it...anyway, I'm p...
The nurses decorate Gwenyth's bed. We found this after the first night. Last night around midnight we got to hold Gwen for about an h...