Our bags are packed and we're praying for a unicorn!

This is it. No more waiting here in Alabama - tomorrow we start our journey to CHOP - our "Big Adventure" is how we've been marketing it to the girls. Our bags and totes are packed. The girls have commited to the toys they've chosen to bring and those that will be waiting for them when we come back - I picture a "Toy Story" like party in their playroom when we leave. Macsen's room is set up and ready for his tiny self...
I think I've been sort of in denial that this is all happening. I feel fine doing the day to day -  making meals, doing laundry, putting the girls to bed. But then something will bring everything into focus what we're leaving behind here... Big things like our closest friends. Our home with everything like we like it. And small things like my memory foam topped king size bed (so amazing during the uncomfortable last month of pregnancy.) The awesome people in the produce department that always go check if there are more organic apples in the back. And most heartbreaking for me at this particular moment? Carys's first day of Kindergarten... while everyone else she has grown up is excitedly double checking that their little ones backpacks are ready and by the door, that first day of school outfits are clean and laid out for the early morning we aren't doing that.... and I'm so sad. I WANT to be doing that instead. I want the worry of "will she be ok for a full 8 hours at school" to be the biggest worry we have. To hope all day that she likes her teacher and that she finds a kindred spirit in her class. Tonight I wish her bedtime prayer had been about her trepidation with the first day of school not the prayer she said 2 nights ago "Dear God. Please help Macsen's special heart. Please don't let him die."
I am grateful Macsen has made it this far - 12 weeks ago we were told he probably wouldn't- all his kicks and tiny baby punches have been a blessing we weren't certain we would get. And I am grateful we have the ability - thanks to our friends, family and community- to travel 1000 miles away to give him the very best chance. And I am grateful that what we face we will face as a family - all together - even maybe getting a few weeks before he is born to really spend time together. And I am so afraid because I don't know what is going to happen... I don't know how long we will be there, or how he will do after birth - will I get to hold him? Will the girls get to see him without tubes and wires? Will I get any pictures with him - of his perfect untouched skin before he is pricked, punctured, sliced open and stitched back together. Will he make it? Will we even be given the option of surgery? Will his heart be able to take it. If it's too much for him will Aaron and I know? Will we know when we should keep pushing him to fight or if we are only prolonging his suffering.
This month has been a really tough one for the Heart Community - an amazing group of parents I'm blessed to  be a part of on-line and before May never knew existed. They are an amazing source of information - some newly minted heart moms still waiting for their heart baby's discharge or veteran moms with 6 year old HLHSers navigating their own first day of school.  I've rooted on babies thousands of miles away when they go in for heart caths and surgeries, meetings with specialists. And I've reveled in the posts about kids playing sports - or in gymnastics, attending school. But with the triumphs I can now share in I am also exposed to the heartbreak, the sadness and tragedy when after months of fighting a baby loses their battle with the beast that is HLHS.
After months of cramming in all the information I can glean from hundreds of other heart parents and their daily  challenges in dealing with HLHS I still feel woefully unprepared for this. Because all HLHS baby's are so different from one another I don't know what information will be useful and what won't apply to our special little man. We'll do our best and that is all we can do. Sigh. So wish us luck on our "Big Adventure" with the kids, the clothes, the dog and the cat. And lest you feel overly concerned about Carys's loss of innocence because of all this she did finish her prayer with "And please God, let me have a unicorn. Amen." Baby, I'll pray that you never stop hoping for a unicorn xo