Beautiful girl.
Pretty polka dot dress!
Daddy got me dressed today!
Snuggling with Aunt Monica!
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.
Sunday, October 11, 2009
Saturday, October 10, 2009
Update - October 10
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 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 :)
Thursday, October 8, 2009
Update - October 8
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.
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.
Tuesday, October 6, 2009
A few pictures from the past couple days
Snuggly.
Matching! :)
The socks are my favorite!
This was the first thing I bought Lydia when we found out she was a girl.
Pretty pink dress!
Monday, October 5, 2009
So, this is pretty much what we spend all of our time doing. This is about as much as she moves around and about as awake as she gets. After our horrible days at the end of last week, we've been so thankful to have so many good days.
She had some seizure activity a little this morning, but nothing too severe. It's hard to not panic when we see seizure activity, but we're doing OK so far. Every time she moves her hand or looks up at us, we are thankful.
If I can get a video of it, I'll put up our new favorite thing. We have a toy that's a puppet frog and when you close the mouth, it makes a croaking sound. Lydia LOVES it. She follows the sound and moves around to look at it. Hopefully we can catch it so you all can see it. For now, please enjoy the cuteness!
Saturday, October 3, 2009
Photos from the past few days.
Snuggling and reading The Tale of Peter Rabbit.
Aunt Carola!
Uncle Rich!
Hooray for Aunts and Uncles!
The most awesome pediatrician IN THE WHOLE WORLD. You wish your pediatrician was as amazing as ours.
Lydia's BFF Evangeline getting ready for a walk!
Family outing!
So awake during her walk.
Aunt Carissa!
Friday, October 2, 2009
Update - October 2
Sorry for the lack of update. I think about you all keeping up just from these updates and hope you don’t worry too much when we don’t post. Unfortunately, there’s cause to worry these past couple of days.
We brought Lydia home from the hospital Wednesday with plans to put her on the max dosages of her meds within a couple days. On Thursday, she had several seizures that made her airway close up and she stopped breathing. After many hours with these seizures, we started to think that Lydia wouldn’t make it through the night. As usual, our little girl surprised us. She breathed fine through the whole night and has continued to during the day today.
We’ve upped her medication levels to as high as they will go. We’ve seen some seizure activity and her breathing is becoming more and more labored.
We were thinking of bringing her to Branford Hospice Center but decided we would keep her home instead. We have been very well taken care of by visiting hospice nurses and friends who are nurses.
We don’t expect her time will be long, but she’s surprised us before. We’ve been so blessed to have these days at home, even the scary ones and we will joyfully take every moment we have with her.
We feel the presence of our God all around us, giving us peace as we await His perfect time.
Please don’t stop praying for our sweet girl.
On a happier note, we took a walk today! Our friend Sarah, her daughter Evangeline (who is Lydia’s BFF), Micah, Lydia and I went for a quick walk in the park. It was nice to do something that felt so normal. Pictures are coming!
We brought Lydia home from the hospital Wednesday with plans to put her on the max dosages of her meds within a couple days. On Thursday, she had several seizures that made her airway close up and she stopped breathing. After many hours with these seizures, we started to think that Lydia wouldn’t make it through the night. As usual, our little girl surprised us. She breathed fine through the whole night and has continued to during the day today.
We’ve upped her medication levels to as high as they will go. We’ve seen some seizure activity and her breathing is becoming more and more labored.
We were thinking of bringing her to Branford Hospice Center but decided we would keep her home instead. We have been very well taken care of by visiting hospice nurses and friends who are nurses.
We don’t expect her time will be long, but she’s surprised us before. We’ve been so blessed to have these days at home, even the scary ones and we will joyfully take every moment we have with her.
We feel the presence of our God all around us, giving us peace as we await His perfect time.
Please don’t stop praying for our sweet girl.
On a happier note, we took a walk today! Our friend Sarah, her daughter Evangeline (who is Lydia’s BFF), Micah, Lydia and I went for a quick walk in the park. It was nice to do something that felt so normal. Pictures are coming!
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