Right now, I am suffering from a terrible case of the “shoulds”. What is that, you say?
The Shoulds: noun a condition in which an affected person continually fixates on all of the things one should be doing, but cannot do due to unchangeable circumstances.
I should be rocking a baby to sleep. I should be taking her to doctors appointments. I should be kissing her little toes and fingers. I should be covered in spit-up and changing disgusting blow-out diapers. I should be blissfully happy…. but I’m not.
Instead, I am alone. No baby. Silence. Emptiness. And it’s not fair. Seriously, even Snooki gets to have a baby?!? A little meatball in the oven. And I am sure that her baby will be born perfectly fine (and hopefully tan). Why should she be so blessed and not us?
For weeks, we have been trying to be patient as we waited for the results of Callie’s genetic testing. John and I both looked forward to finally getting some answers. On Wednesday, we finally got the phone call we had been waiting and waiting for. The genetics team at D.C. Children’s called and told us that they confirmed that Callie had Neonatal Marfan Syndrome, a genetic disorder that affects the connective tissue in the body. We will go on Tuesday to meet with the head genetics doctor to discuss Callie’s diagnosis in more detail.
As John shared the details of his conversation, I waited for the feeling of relief that I had hoped would come with this phone call… relief at having an answer. But, relief never came.
Instead, I was flooded with flashbacks and haunted memories from our short time with Callie. I was consumed with images of her long, slender fingers and floppy wrists. I relived the moment of her birth and the agony of not hearing her cry. I was once again in the NICU, seeing her so pale and hooked up to all those tubes. I fell deep into my grief and sorrow.
And I also felt afraid… if Callie had Marfans, a genetic disorder, does one of us have it too? Will we ever be able to have healthy babies? I’m afraid of everything right now. I can’t stand it when John drives away for work. What if he gets into an accident? Our dog Lily was limping… What if she has cancer? I know these fears are unlikely, but after losing our baby, I know that you can’t say it won’t happen… because it could. It could!!!!!!!!!
This week I am struggling to see the positive, the silver lining. I know it is there… and I know I will find it again. But grief is like that. It steals your happiness and threatens to eat you alive. When I am feeling the most downhearted, I get out our pictures of Callie and I find the one that I took trying to capture what it looked like to be lying right next to her, face-to-face. I remember her little lips and chin, her baby smell. I turn my head to the side when I am looking at it so that I can pretend I am curled up in bed next to her. I talk to her and tell her how much I miss her. And then I try to picture what she will look like in heaven when I see her again. Will she look the same? Will she be a baby or all grown up or somewhere in between? My granddad wrote me a note after Callie passed away that said:
Dear Kristin & John:
God has called Callie Marie home for repairs. The next time we see her she will have a new body and so will we. What a wonderful day that will be!
Callie is one more of the great reasons that drive me to try to live the rest of my days on this, God’s earth, so as to ensure being a part of the celebration.
May God bless you and keep you, and may His presence be a comfort to you during this trying time.
His note brings me so much comfort and I carry it with me everywhere I go. She will have a new body. And life on earth should be celebrated. I don’t feel much like celebrating right now, but Granddad’s message sparks me to fight for hope. And it is a fight right now. A deep struggle within myself… and I know there are going to be plenty of days where all I can see is gloom & doom, despair, and self-pity. But the spark of hope is always there and I will fight to be a part of this celebration we call life… for Callie.
Right now, life is all about putting one foot in front of the other and setting small goals for myself. Today’s goals: take a long walk, find things that I can be thankful for, and… stop watching the Jersey Shore.