Because I’m her Mom

Today’s visit was an emotionally draining one for me. Ava got her last dose of Vincristine and Daunorubicin for the induction part of her treatment. She’s up a pound from last week and though her counts are down everything is going as planned. We met with Child Life and had a brief discussion about what getting a port means.

We met with her oncologist, Dr. Molina and got an idea of what’s we should expect for next week. He was patient and answered all my questions. He was encouraging and did his best to keep everything positive. He was great. But the truth is we really know nothing until we get the results of next week’s aspiration.

Here’s what we do know. Ava will have an EKG and ultrasound of her heart on Monday. On Wednesday she’ll have her next lumbar puncture and bone marrow aspiration. Depending on her counts she may also get her port put in. They hope to have the results by Friday. Then they will set up a meeting with us to explain the different pathways they have for her and we get an idea of the next four weeks. Dr. Molina said so far everything looks encouraging, but the only true indication of how she’s responding to treatment will come from the peek into her bone marrow.

You’d think I’d be happy or feeling good. I was until we got in the car for our drive home. For the first time in a long while I was filled with such sadness and even some hopelessness. I’m sad for my sweet Ava. I’m sad for her amazing brother and sister. I’m sad for Kevin and I’m sad for me. It feels so wrong to say I’m sad when I know how blessed we are and I can normally shift my thoughts, but today I couldn’t stop the tears from coming. Sometimes it’s so hard to be positive, to be thankful for what we have in the moment, to remind myself just to think about today and not to rush into another days worries. I tried thinking about how lucky we are to have such a strong support system. I thought about how blessed I am to have been able to care for her over the last 4 weeks. I tried being be grateful for the health insurance that would take care of most of the $80k statement we got yesterday. I also tried to focus on the fabulous doctors caring for her. The whole way home I tried my best to pray. None of it worked. While I’m still grateful and counting all our blessings I’m also worried, angry, and frustrated.

I’m worried about leaving my girl. Yes it’s great I’ve been able to stay with her, but I see our time together running out. Back to school season is quickly approaching and with it my return to work. As much as I’d love to stay with her everyday I know Kevin’s right when he reminds me we’re a two income household. He may also be right when he tells me it will be good for me to get back to doing what I love, but for right now I don’t want to leave her. I’m angry she’s got leukemia and I have to leave her.

I’m frustrated that we can’t plan. I describe myself as a fly by the seat of my pants type, but this has taught perhaps I’m not. I’m pretty sure what triggered all of todays feelings is that they switched her procedure day to Wednesday. All along I’d had down for Tuesday. I’d prepared for Tuesday. I had made tentative plans based on Tuesday being the day. Now everything in my calendar is written “Possibly —“. Possiblies suck. Like Ava I want certainty.

As I cried on the way home Kevin asked me what he could do to help. How he could lighten my load, ease my worries, or lessen my frustration. Thats when I realized I don’t want anyone to take this from me. All this worrying, frustration, and anger is because of my love for Ava. She’s worth this and so much more.

Lots of people keep telling me how strong I am and what a great mom I am. The truth is I’m not special. It’s what moms and dads do. Though I wish this on no one, I’m confident any of you would do that same. I’m not special, I’m Ava’s mom.

5 thoughts on “Because I’m her Mom

  1. I realize that my ordeal with Chey’s recent medical situation is only a fraction of what you’re dealing with, but I totally get ALL of those feelings you’re having, Grace. I have certainly felt some of those very same things myself in these last 4 weeks. All of the unknowns are so incredibly hard on the whole family. And these are our babies! When something is wrong with them, we want the rest of the world to just pause for awhile so we can focus on them and only them. I am constantly thinking about your family and am praying for you guys every single day.

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  2. Grace , as I read every single one of your post ,the only thing that come out to my mind is how strong you are . I will keep praying for Ava’s full and fast recovery. God bless you and your family

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  3. Grace it sounds like you are grieving, grieving what was, what you you thought was to come, and what can’t even plan for. It does suck!
    I think you know I have a child with a life threatening medical condition (type 1 diabetes). When he got sick and our lives changed I grieved. It seemed like everything changed and was so much harder and scarier. It was exhausting and frustrating.
    Of course we got the hang of our “new normal” after some months and our fear levels decreased. But it’s been hard!
    My point is that what you are feeling is normal. When you can, allow yourself to experience and honor your feelings instead of trying to push them away. Of course trying to focus on the positive is wonderful when you can do it. Just don’t beat yourself up when you feel sad, angry, and frustrated.
    With lots and lots of Love!!

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  4. I don’t have any words to ease any of the pain that you and your family are going through but know that your school family is here for whatever you need. We will be by your side in this and will do our best to take any of the school burdens away from you and just know that we are behind you and your family 100%.

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