Friday started like any other day. I got the girls up, fed, dressed, and out the door. Penelope and I dropped Charlotte off at school, and then went for a nice walk in the crisp, fall-like air. We played for awhile when we got home, and soon it was time for Penelope to have her formula. Once that was going, I did some tidying up, a bit of writing, laundry, etc. I was content. And then the phone rang.

It was the Seating Clinic calling. Our pediatrician had referred Penelope to this clinic, as he has some concerns about her muscle tone, and wants her assessed to see if she needs a special seat or some other assistive device. The clerk who was calling me told me about their intake process, what to expect with her assessment, and that it would be a five month wait for her appointment. Even though I knew the referral had been made, hearing about specialized strollers, walkers, and wheelchairs felt like a punch to my gut. I managed to make it through the phone call with only a slight tremor in my voice, and as I hung up, the tears started streaming down my face.

I was surprised at how strong of a reaction I was having to this. I knew there have been ongoing concerns about her muscle tone, and that this was a possibility, and yet I was experiencing this outpouring of sadness at the thought of my sweet girl needing this support. At first, I tried to stifle my tears, telling myself that I was overreacting and being ridiculous, but eventually I gave in to my grief and put my head down on the table and sobbed.

I am discovering that dealing with grief takes an indeterminate amount of time. It’s been almost a year since we received Penelope’s diagnosis, and I still have moments where I am very much in mourning. I am struggling with the loss of the dreams I had for her; dreams that started the moment I found out I was pregnant with her; dreams that I am slowly coming to realize may never come true. I’ve been forced to change that picture I had in my head of what our family would be like. It’s not that the new picture is bad- it’s just very different, and I’m still adjusting to that.

This beautiful picture makes me so happy

There’s no denying that this is a beautiful picture

Maybe one day I will be able to receive a phone call like that without dissolving into tears afterward; maybe not. It’s hard to imagine feeling relaxed when confronted with your child’s potential disabilities. In the meantime, I just need to allow myself to feel the grief when it hits me- bottling it up isn’t going to do anyone any good. I am still holding on to the hope that when Penelope’s assessment is done sometime in the next five months, it will be decided that she doesn’t actually need any of these assistive devices. For once, having to wait months for an appointment doesn’t seem so bad- it gives her time to meet some more milestones, and it gives me time to work on my acceptance of whatever the outcome of her assessment will be.


My funny, sweet, baby girl

My funny, sweet, baby girl

And now for a bit of blog “housekeeping.” I have created a Facebook page for this blog, so please like it and share, if you are so inclined. If you usually receive notice of my new posts via Facebook, then I strongly recommend that you like the page, as I will mainly be sharing links to new posts via the Facebook page, instead of through my personal profile. Thanks to everyone who reads, follows, and shares my posts! You can find the Facebook page here, as well as on the right side of the screen, just underneath the “Recent Comments” section.


2 thoughts on “Grief

  1. Julie, you are not alone on this one. I’ve got to admit I’ve had some of these same feelings and yes.. tears as well. I do think I’m adjusting as you said, but I do find its two steps forward and one step back at times. We’ll get through, but it is an emotional journey we are on. Pappi

  2. I am so impressed with your understanding for grief. It is the arrow that pierces and causes all sorts of pain-from the past, in the present and for the future-to sting. Sometimes it’s expected and other times it just comes right out of the blue. I guess that’s because grief is not usually about one thing-it’s from a complex matrix of losses. By writing this blog you are helping all of us realize that loss and resulting grief can be trans-formative and re-generative. Thank you.

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