Lydia has been having some more substantial seizures the past couple of days. She breathes through them all, but she twitches pretty dramatically (compared to what we've seen her do) and she has been crying more often. We can't tell if this is just "normal" baby crying or if something is wrong. It's getting a little disconcerting. Why can't babies TALK? We just keep praying that the crying isn't because she's in pain. Please join us in that prayer - we don't want her to be in pain.
We're looking forward to the holidays. It's a gift that she's here with us. We're planning to decorate the house for Christmas and my sister's friend's husband is dressing up as Santa and coming over so we can take pictures of Lydia with Santa without having to go to the mall. There are many things to look forward to in the coming days and weeks.
As excited as we are, we're also tired. It's tough never knowing what each day will bring, knowing that looming in the distance is the big awful thing that we're always sub-consciously waiting to have happen. As much as we try to keep ourselves living in the moment, it's getting harder and harder.
We're planning to get a Christmas tree this weekend and we tried putting Lydia in her Baby Bjorn to see if she'd be OK to ride around in that. She loved it and I was so excited. Then I burst into tears. The compounded emotions of every good thing that happens is overwhelming. I'm thrilled that she can come with us to get a Christmas tree, but that only reminds me that I get so excited because she's sick and may never do it again.
Even though there are times when it's hard to pray or to know what to pray, we keep looking to Him for strength for each day.
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.
Jen, as always I am thankful for your honesty in sharing your feelings. I am so excited that you are making holiday memories with your sweet baby girl. Also, thank you for sharing specific prayer requests for Lydia (that she won't be in pain, etc.). We pray for her everyday and it's helpful to know what direction you want our prayers to go. Please share more of that if you ever have specific things you want us to pray for! Love you and I'm praying that all of you have a wonderful Thanksgiving and happy decorating times! yay! Love, Megan
ReplyDeleteI know it is hard. Bittersweet at best. Hang in there. You will cherish every memory so make many. And I know you are tired. Find ways to rest with her IN HIM to sustain you. And if at all possible, be practical. Eat healthy foods, drink lots of water, take a walk daily, nap with Lydia, and maybe even take a few herbal supplements or something. I know it sounds small compared to what you are facing but you need to recognize the physical limits of your body. GAIA HERBS has an adrenal support herbal supplement for stress management that I swear by. And maybe some tea in the evening would help too. It is hot and healthy and delicious and a good way to decompress while you watch Lydia sleep and realize you all make it through one more day. I love you friend.
ReplyDeleteSending you prayers. I know how hard it is to be in your position. Our daughter's illness was different, but the fears were the same. I am so grateful your Lydia gets to be home with you. It's a gift we never had with Peyton.
ReplyDeleteThinking of you
xxPeace