Ordinary miracle today.
I have that song stuck in my head.
It is making my already teariness even tearier. But I think they’re happy tears. Tears at realizing how very far my baby girl has come in one year. Tears of relief when I look back at pictures of her first months of life and see how sick she was, and i hear the doctor telling me how high her levels are, and i realize that she probably shouldn’t be here – and yet she has SURVIVED. She has fought. She has struggled through so much and here she is – rolling on the floor, laughing at her sisters, voicing her tiredness and desire to be picked up. These are my ordinary every day miracles.
She is here.
She is growing.
She is learning.
She is THRIVING.
For that we are so thankful.
I am on my way out the door now to go pick up her specially prepared “experimental” medication. Thank you for your prayers – it went from a projected "$800 MONTHLY tab, to just around $70 a month. Huge Huge relief. I almost lost it in the pharmacy yesterday when he told me that – I was feeling so….sorry for myself?/overwhelmed/stuck between a rock and a hard place – of how do we afford this, and how do we afford to NOT get it? There is no guarantee that this treatment will work to bring her levels down. It’s just the doctor’s best stab right now, with what we do know. And you have to hold on to that as a parent I think. This is what I have pushed for a diagnosis for for this long year – to see if there is ANYTHING, SOMETHING we can do to help her. And to have been faced with the decision to pay our bills or pay for her meds – that is such a horrible place to feel like you’re in. I know we aren’t the first OR only ones to feel like that. I am so grateful that somehow this pharmacist was able to find a way to make it not so expensive. But my heart hurts for the many families who aren’t in that position.
When we come home, I will make lunch, put Karissa on the bus, and a nurse will arrive to teach me how to inject this medicine into my baby every day for the next 30 days. I only get the nurse for three days though. After that it’s the all terra all the time show. I hope I have enough strength in me to continue doing it. As hard as it has been to hold her down for her many sticks and pokes and procedures this year, it hasn’t been ME doing the hurting. But from here on out, it will be. It’s a tough mental block to get over as a mommy. It goes against every common sense mothering cell in your body to inflict pain on your baby. And yet what can I do? To not inflict this little pain on her could lead to further damage.
So before I break down in tears again right now, I’ll end this one.
PLEASE feel free to leave questions here in the comments about what is going on – I know its all hard to understand.
we appreciate your prayers and love and support so much.
thank you –