A friend of mine from BYU has hooked me up with another one of her friends who has just had a little baby boy (in March) with HLHS. I have spent the last hour reading their story from the beginning, they found out about their sons condition about the same time in pregnancy as us so I have read from that point up to current day, their baby boy is just over 1 month old. He has had many more surgeries for other abnormalities and is still in the NICU at Primary Children's in SLC. It has been a hard read, they have had 2 friends lose their HLHS babies, one shortly after birth, the other just after her 1st birthday, and there are pictures of their little boy with all sorts of tubes and things all over him. They talked about how they were only allowed to hold their baby for minutes (for the mom), the dad only had seconds to hold his child as he handed him off to the NICU nurse to be stabilized. And then after a day they were able to hold their baby's hand because one of the IVs was removed, and then another day or so and they were able to finally hold their little baby for a real amount of time. It's been a really hard read for me. I have cried a lot but I said to Thomas that I feel that knowing what is "typical" will help me be grateful for what we get and have realistic expectations. So when I get to hold our little girl's hand while she lays in her little crib I can be grateful for that and not feel ripped off for only getting that.
Well, this family shared a kind of poem that made me cry, but it's very touching. I am grateful for my faith, without it this would be so much harder. The author is unknown.
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you." He reassures the scared little angel that everything will be okay, and that the angel is just going for a visit.
The little angel is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still a little scared. He asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help you out, and you will be fine."
Then Jesus gives the angel more details about His plan. He says, "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart.""Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."
Our little girl has so many people who love her, and most importantly a Father in Heaven who loves her and will give her all that she needs to complete her mission here. Before I knew about her diagnosis I wrote on my facebook that "I can't wait to hold my little baby." That is so much truer now. Although I am so scared for her, and for us I long for the day when I can just hold her in my arms, tell her I love her, and never let go. That moment may not come right after birth for us, but the waiting for it will make it so much more meaningful for me.