If it is an invisible cyclone, I would be holding onto Cecilia, walking through it, and so scared that she will be snatched out of my arms at any moment by this invisible force of nature. Then, briefly, part of me wants to just let it take me. My arms are tired and they hurt. My soul hurts. My heart hurts. This fear is consuming me. And the more I love her, the more those places hurt. But I keep walking and I grip tighter and I will keep convincing myself that we will not be consumed. We will not give up, and all of my fears will stay down to the very bottom of the invisible jar that they are locked inside of.
I cried so much yesterday. Out of no where...Cecilia would laugh and the first thing I think of are my friends who will not hear their babies laugh and it just makes me so sad! I am a failure at coping. I realize this. I made myself make a list of all of the good things that happened this week, so I can not let these sad feelings I feel tune out the ones that should be making me so happy.
- Cecilia's Home Care Nurse brought me Starbucks (yes this does deserve to be on my list, LOL. I am so tried and exhausted, that coffee was the biggest pleasure of my day! I take care of 5 children and my mornings are so busy that I can not even make myself any)
- Cecilia's Birthday ♥ Brother, Maverick, was officially listed status 1A for a Heart Transplant! That means he is high priority on the list and just that he is finally on the list is something to celebrate (the process to be listed is not instant unfortunately)
- Cecilia is scored exceptionally high for her social skills, which makes Karl and I happy because one thing we were told by doctors during the pregnancy was that she might have delays, specifically that her brain could suffer neurological delays and damage. (She does have physical delays but she will get therapy for that and catch up to her age group eventually!)
- Some Heart Mamas and I are exchanging "Secret Santa". I could not be any more excited over the little warrior that we are assigned to get a gift for! I wish I could say more, but it is a secret ♥
- Even though Karl and I have been having a hard time to see eye to eye about Cecilia's care, we are at least on a compromise stance now. I have been fighting with him about this for a long time, and I feel like we don't have to fight anymore. We should be a team. Not being a team has been killing us
- Tomorrow Cecilia is having a photo session with Snapdragon Photography ,and the Mama behind the camera is another Heart Mom. Her daughter Lily is recently post Fontan (stage 3), and she also had a g-tube when she was Cecilia's age, so she has tons of experience with a baby just like Cecilia! I can't think of anyone better to take her photo, and I am so excited to meet Lily! ♥
- I think it is safe to say another blessing of every week is our interstage NP. She is beyond helpful and one thing I believe is there would not be another like her in any other hospital.
It was really hard for me to make Demyni's heart. I changed it several times. It kept coming out too feminine, he doesn't deserve no sissy girly heart! He has not been doing well for his entire journey, and I prayed so much for this little guy. This baby is stronger than a hundred adults put together...
Cecilia doesn't like it when I use the flash!