Lydia has been having seizures off an on for the past two days. Today has been better - she had a ton yesterday. She rarely lost her airway, just a lot of twitching. It’s pretty awful to watch, as she has no control over her body. We don’t really know what to expect at this point. Everything is up to her.
If I’m being honest, we’re exhausted. We’re sleeping at night (and some during the day) thanks to our wonderful hospice nurses who stay with her when we need to sleep, but we aren’t feeling rested. The emotional expenditure of wanting to spend every waking moment with her but still preparing ourselves for what we know is coming is starting to take its toll. Turns out, loving something you know you can’t keep is a pretty hard thing to do. And then I look at her and think, “How could we NOT love her?” She is the sweetest, most beautiful thing I have ever seen.
We want to say again how thankful we are for all of you who are praying for our girl and who feel love and a connection to her without ever having met her (or us in some cases!). We very much wish that everyone could meet her, but we’re feeling the need for the three of us to be together. It’s not that we don’t want people to see her, we are just finding it so much more important for our family to have time.
Every moment of every day, God is good. We are blessed to have Lydia home. Each time I look at her, I’m amazed by God’s grace and kindness to us in the midst of this time. We don’t understand and struggle at times, but we cannot doubt His love for us when we look at her face.
Thank you for your continued prayer. Blessings to you all.
In August of 2009 God changed our lives by giving us a beautiful little girl. Lydia was born with Zellweger Syndrome. Lydia went to be with Jesus in April of 2010. This is the story of her life and death, and of our journey through grief in search of healing.
Praying for strength and guidance for you Jen and Micah! Comfort for Lydia and your family as well:) She is such a sweet little baby!
ReplyDeleteThanks for always keeping us update with wonderful words & photos of Lydia Eileen Thompson. We love looking at Lydia everyday on the web. What a blessing she has been in her short life here, already touching many lives, especially ours. That is quite a tribute to Lydia & her parents. Thank God for Lydia's life!! We lift the Thompson family up in prayer -- God will direct your steps and provide all that you need at the right moment. In confidence in our Risen Lord -- Amen!
ReplyDeleteAunt Michele, Uncle John & Jay Sullivan
Jen- We haven't met...I heard about your blog through Liz Dolham- we went to college together. Just wanted you to know your story (and Lydia's) has touched me. I'm praying continually for you all as you go through this difficult time. I assume you're living in Connecticut (as I've seen you mention Bridgeport and Yale). I actually live down in Darien, and will be putting you on the prayer list at my church. Thanks for sharing your faith. It's an inspiration.
ReplyDelete-Abby Young
Your story has touched me in such a way that I can not even explain. Your family's strength and faith in God is inspiring.
ReplyDeleteYou are all thought of and prayed for daily. Thank you for taking the time to keep everyone updated and sharing such beautiful family photos.