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(click photo to see all of it)

This probably doesn’t make sense unless someone you have loved has died. But I have to say that even though Elli died one month ago (yesterday), part of me still doesn’t grasp that it really happened. The day we dreaded and fought to keep at bay for 8 years, 8 months, and 27 days finally arrived. And now she’s gone.

I can write it. I can say it. But my heart still waits to hear her sounds, see her smile, touch her hair, smell her skin.

We I am slowly but surely doing things that show myself that she is dead. I am finding new homes for her supplies — diapers, feeding tubes, formula, bed pads, syringes (anyone need syringes? I have dozens in all sizes from 1 mL to 10mL!). We’re working with a special organization near our home (which I will keep anonymous here because I’m trying to keep this a semi-anonymous blog) to find families who need Elli’s equipment.

She accumulated many things, costly things, over her short life, and these are things that other families often cannot find money to purchase. We’ve found a very special family to take her power wheelchair — they pick it up tomorrow (I can only imagine how excited they all must be!). We’ve found another family to take her manual wheelchair, and one who needs her hospital bed.

It is painful to see those things go. They were such a part of her life, and they helped her greatly (except when she refused to use them… I’m referring to the walkers that she never walked in for me!). I did not resent those things. They allowed her to live and participate in our family and get out into her school and shows us what she was capable of. I had accepted her physical challenges and her tenuous health as just part of the package that made up “Elli.” This was part of who she was. I am so thankful that she no longer needs any of it, but it is still very hard to see them go. It’s like saying goodbye to part of her.

Another strange new thing is how long and slow the days are since she died. I constantly had things to do for her before. Appointments had to be made, hospital and insurance statements had to be reconciled, supplies ordered and picked up and delivered, forms filled out for school, and more and more. I had a to-do list that grew faster than I could cross things off. So the days flew by.

It’s totally different now. With that comes more freedom to do fun things with the kids. We’ve actually gone to story time at the library regularly. We go play at the park, and now at the community center since it’s too cold to play outside for long. And the oddest thing of all is how easy it is for me to throw everyone in the van and run out at 4pm. I never left the house with the kids after 4pm, unless someone was here to stay with Elli. It was just too time-consuming and physically-demanding at the end of the day.

It feels really strange to enjoy that new freedom. I feel a little guilty sometimes. But I have to remind myself that Elli, wherever she is, is a fully-realized being. She is not 8 anymore, so she doesn’t see things with child eyes. She would be happy to see us enjoying things that we weren’t able to before.

So I can’t really say that we’ve settled into any new normal yet. We’re putting one foot in front of the other. We cry sometimes, laugh sometimes, and pull our hair out a lot because the kids are still acting like kids. We’re sleeping alright. We’re singing. We’re sad. We’re waiting to see the next phase of God’s plan for our family. And we’re still trying to understand completely that she is gone.

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