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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Tonight I read your post, and tried to think of how it must be to face the reality of a child’s death. I looked at all the photos of Elli, and saw her beautiful personality shining through. I cannot share the pain of losing Elli that you must be going through, although I too know the fear of losing my child. Six weeks ago, our little one (nearly 6 years old) was only hours from death; and yet, at this time, God has spared her little life. However, we know that at some time her life will end. And we will have to face the reality that you are struggling with. We have known of her condition (a cyst in her fourth ventricle, which is twisted through her brainstem, and is inoperable, plus spina bifida, and severe brain malformation) since she was six months old, but when she had a very major episode we were still not prepared for the feelings we experienced. Over a four week period she was near death on more than 3 occasions, and each time she rallied. She has now stabilised, but is on very high levels of morphine to control the pain she is in. She sleeps a lot of the time, and is unable to go to school at this point. But I treasure the opportunity to hug her and tell her how much we love her; to read to her; to blow up balloons for her, or to help her draw a picture. I know that there are things that you regret in Elli’s life – but you have to remind yourself of all the things that you DID do; all the things you enabled HER to do. God’s plan and design are not always apparent to us, but I know God had a plan when we became foster parents to our little one when she was 5 months old. And she has brought so much happiness and joy to our lives, and all the lives of the people she touched. She has outlived all the predictions made on her behalf,and achieved so much more than anyone expected. I am sad that some of the abilities she had struggled so hard to achieve have now become too hard. But I have to put on my ‘happy face’ and calm her fears and help her to understand what has happened to her. Thank you for sharing your thoughts and experiences; you are part of a wonderful family, and I’m sure God knew what He was doing when He blessed you with your beautiful Elli.
Joy-
I only have time to comment on a very practical matters. When I had GD and then delivered, I was left with hundreds of syringes due to an insurance screw up.
No one in the states will take them. However, other countries will. Your best bet will be missions.
There used to be a doctor here who went on a medical mission every year, I’ll see what I can find out.
You are never far from our thoughts and prayers.
Kristin
Still praying for you, Joy…