Last night we slept in real beds. It is amazing the things you take for granted. It was amazing to have pillows and blankets and get to sleep next to Blair. We so needed the time to be together, alone.
Blair is so patient with me. I don't understand how he is handling this so well, even though he assures me he's not really. I had a good friend remind me that when your milk comes in, there is a chance that your hormones might shift and cause you to be a little weepy. Oh yes, this is true. Blair has seen me cry about many things. Most of the time it's not even about Deano. I cried the other night because I bought him the wrong thing from the cafeteria for dinner.
I cried last night at four AM because I didn't have my babies.
Blair's Mom, who came from India to be here for us, brought Ellie to see us yesterday. I came out of a shower and there was my girl. My beautiful, healthy, running, toddling girl. So precious. And talking so much! Oh my heart! Oh my darling daughter!
I don't think anyone can fathom the guilt I feel not having either of my babies to put to bed. Can't know how excited I was to change Ellie's diaper (and it was even a messy one!) yesterday.
I have a newborn baby. And I got a good nights rest. I was up to pump, but I still got good rest. This is practically unheard of for a momma with a newborn!
My heart aches to have my children with me. When we stopped at our house to pick things up yesterday, I looked at the corner where his pack and play should be set up (it's not yet), and his dresser, and all the amazing things people have made for him and yes, I cried. I want them home with me. I want my babies.
I told Blair this morning it almost feels like we're on a surreal vacation, because we get to sleep so much, and don't have to lug Ellie's things all over, and I'm not constantly nursing our son.
But I wish I was.
All of my very soul wishes for my babies, I can't say it enough. I'm a Momma without her babies right now...I feel misplaced in the world.
I walk slowly still, recovering from his birth. I wonder what people must think of me, this slow woman walking to and from her car in the hospital. I want to shout and scream, "I just had a baby!"
As much as this is Deano's story, it's Ellie's too. My girl is spending so much time away from me. Oh Lord do I miss her. All the sudden she looks so big...Dc Children's Hospital has this little bear called Dr.Bear, it's their mascot. She loves him. All through out the hospital she pointed to them and said "Da Bears! Da Bears!" She was enamored with them. I held her up in a window and we looked and looked at them. I can't wait to see her be a big sister. It hurts me deeply that she didn't get to come see Deano before his surgery. I'm grateful that they were able to get it done quickly and successfully, but I wanted her to just see her "baby". Just once. And yes, it's out of fear that it might be the only time.
We aren't out of the woods yet. I celebrate each moment. Every day since Monday I wake up thinking "Thank you Father, for this day." Friday I kissed Blair good morning and said "We made it one more day. One more day."
Time has never felt so precious. We are living in the moment in an amazing way. Accepting enough Grace for the day. Thankful for the new mercies. Thankful for the prayers. Thankful for the love. Thankful for my family, for Blair's family, for the people who love us, my sister friends, and Blair's brother in arms. There are people across this country praying for my son, right this very moment.
How humbling. To be so loved. Whoah. Today one of the Elders from our Church drove out to DC to just see how Blair and I were doing, to pray with us. Just because he woke up thinking about us.
Writing this post, there are more tears.
I've gotten a lot of feedback about writing and sharing his story. I have to. I process things this way. And if my story and Deano's story can help others, why would I not? Look I've met so many other HLHS Momma's. Ones who have gone through this, are going through it, or have yet to go through it. My heart hurts for each and every one of us. My heart is angry at the sin in this world that has caused such pain and heartache. I am constantly reminding myself of God's sovereignty and His Great Love for us. I am constantly reminding myself that this is breaking God's heart too.
It feels like my babies are here, just so far out of my reach. My mama heart wants to do so much more for them, both of them. Especially for my beautiful swollen baby boy.
I have to remind myself, minute by minute, that if they are out of my reach, if I am unable to get to them the way I want to, they are not, nor will they ever be, out of God's reach.
So snuggle your babies, your children, close. Call them up please, tell them that you love them. Treasure the moments that are hard, that are difficult. Drop everything for them, please, if not for yourselves, do it for me. Do it for my Ellie girl who is being spoiled by Mimi, and for my Son who can't be held by me just yet.
When you go to sleep tonight, remember your children are held by the Ultimate Father. Remember that you are held by Him as well. Remember you are His Child and His heart is for you.
Remember no one is out of His reach.
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