Wednesday, January 16, 2008

Edmarc

We met last night with a woman that will be our case worker for a children's hospice group called Edmarc. She is incredibly kind and supportive. You get that just from talking on the phone with her. Nevertheless, I wasn't all that excited about having to meet with her for the first time last night. I guess it's all that it stands for, it's making preparation for what is happening and still to come. It was nice to hear her specifically voice that without any cue from me. She's obviously walked with a lot of people through a lot of difficult situations. Now her hand is extended to us...

I'm thankful this morning that we have put ourselves in their care. There is the promise of as much support or as little as we desire for the time being and then, if Sully does come home with us, 24 hour nursing care will be a phone call away. That's comforting to me, to know that I won't be alone in trying to care for Sully when I feel so helpless. For the second time in all of this I felt myself hoping for him to be able to come home. The first time was after watching the 99 balloons video.

This is a good place and a hard place to be. I'm grateful for the hope and desire, but I wonder if it will hurt even more to be given even more days with this little guy, to let my love grow even more for him before he leaves us. I think about the heights and depths analogy - that they go hand and hand and that you can't know the true heights without the deepest depths. I so often am willing to exchange the heights if somehow the depths could not feel so dark and deep. I guess it is my doubt that any joy could really balance out this sorrow that keeps walking us deeper into the valley.

Once again, I'm left in a place of just taking each day for what it is. I don't know what is going to happen. I can't bank on anything. So, I wrestle to wait patiently. I must trust that God is preparing me for what he knows is coming and that he won't leave me alone in whatever that is, however dark or deep.

If I go up to the heavens, you are there; If I make my bed in the depths you are there...If I say, "Surely the darkness will hide me and the light become night around me," even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you. (Psalm 139: 8, 11-12)

4 comments:

Anonymous said...

I sing and think about you. I hope that we can spend some time together when we come.
Love, C

Victoria said...

I'm glad you have hospice support (and completely understand hating being in a positin to need it)

Emily said...

I have read your blog and looked at the trisomy website and just cried. I could not imagine the fear and pain your family is going thru. I have been praying (as has my church) for your family and Sully. As well as, for God to show devine healing. Continue to look unto him and he will sustain you. I wish I was able to contribute to the playground but am unable. I can however continue to pray and will do so. In Christ, Emily

charity said...

Hi there, I am Charity, I go to church with Naomi. She has shared some of your story with me and I have been asking the Father what to say, cause I can't even pretend to know what to say, but I will let you know that ever since Naomi shared your story with me, that you have been on my heart and that I continue to pray for you and sully and the rest of your family. I ask the Father for strength and comfort and peace for all of you. It's good to see you write that you know that the Father has a plan for you and that He promises to never leave or forsake you. I have a story to share and by doing so I pray that it gives you hope...17 yrs. ago my sister in-law,Jeneane was pregnant with her daughter Nicollette and at 5mos. after they did the amnio test, they told Jeneane that her baby had down-syndrome, she was devastated but continued to pray, when Nicollette was born, there wasn't a thing wrong with her! That's what I am believing for your Sully. I pray that you and your family would feel the warm embrace from the Father while He is cuddling you all in the palm of his hand.
In my prayers
Charity