This little girl of ours is a perpetual surprise. When I posted last, she had had seizures all the day before I wrote and was desating frequently the day I wrote. Friday (yesterday) and today she has been perfect. She is having a difficult time breathing every now and then, and she’s working really hard to breathe sometimes, but she hasn’t had any seizures. Just when we think it’s time to panic, she surprises us with more good days.
In that, we’re trying to figure out the best way to live our day to day lives. We’ve both gone out in the past couple of days (for about an hour at a time), but aren’t sure exactly what to do with ourselves. We’ve been spending all of our time in the house with her, and as much as we love being here with her, we also kind of want to be OUT doing things with her - like normal people. Since we aren’t normal, we’re having a tough time figuring things out. I for one feel like I’m starting to lose it a little. I feel like we’re just sitting around waiting for her to die, and while we know that’s going to happen at some point (some days it feels closer than others), we don’t know when and I want to get as much out of these days as possible, especially her good days.
Since she seems to be doing better these past couple of days, we are more optimistic and are entertaining thoughts again of an open house. We’re still working out the details, but stay tuned for more on that.
In other news, Micah is sick. He has an ear/throat infection which has had him slightly out of commission for the past couple of days. We’re hoping he’s on the mend. I, in turn, now have a sore throat. Despite us both getting plenty of sleep, we’re exhausted and seven weeks of hospitals and sick little baby girl is starting to take its toll. Please pray for restored health. We don’t want to miss any time.
Otherwise, things here are pretty normal...you know, normal-ish. My favorite part of the day is bedtime because we snuggle into the rocking chair and I read her a story. We’ve read Peter Rabbit, Horton Hears a Who, The Velveteen Rabbit, Where the Wild Things are and a couple of Babar books just to name a few. It’s such a wonderfully normal thing to do. I put her in her crib and Micah and I say a prayer for her. I wind up her singing giraffe stuffed animal and we watch her fall asleep. In those moments, I forget how bad things are and can only thank God for the good gift He has given us in her. We’re a family the way He meant us to be.
He is good and we are thankful.
PS - I’ve managed to lose my camera cord but when I find it, there will be more pictures. Promise :)
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.
So glad God has been blessing your lives with Lydia's good days! God is so good. Hope you'll get to feeling better! =)
ReplyDeleteI have USB cables just laying around all over the place here. If you can't find it let me know and I'll send one up.
ReplyDeleteI am so happy to hear that she has been feeling better today with no seizures. I can relate to some of what you are going through, I know how tough it was for us knowing our child had limited time. We, too, kept putting off having people come to meet her because of fear of germs. Could you maybe do an open house and ask people to wash their hands and wear masks? I don't know if that is feasable for Lydia's situation, I only know that I wish more of our family and friends had met our daughter before she passed. I am sending you prayers for good health and the strength to endure these days which leave you feeling the most strain.
ReplyDeleteOn a side note... Lydia is just so beautiful, I love the new pics from today... she has the cutest outfits. Thank you for sharing your sweet girl with us, and for sharing your story.
God bless.