I've felt like God was trying to tell me something the past couple of days. When I found out that Claire Cox passed away I think I realized a part of what God is trying to say "Andrea, it's not as bad as it could have been". I remember the emotions that went through me as the nurses came to our room and told us to notify our families and pastor...that Ella wouldn't live through the night. I remember not sleeping and jumping at every telephone ring and knock on the door, and praying that they weren't saying she was gone. I hope that it will never be as bad as those first few days of Ella's life.
Now it's just different. I don't wonder if she'll live, but I wonder what kind of a life my sweet daughter will have. As I stood up at bible study on Tuesday (and I really HATE to talk in front of people) I realized that I'm scared. I thought I was tough enough to stand there and tell these women of the struggles that I face with Ella...and I broke down. I haven't stopped crying. I bawled to Joe twice yesterday, I broke down to my mother today, and I sat on the couch most of the day (Ella and I both in our PJs) and just held my daughter and cried...she slept most of the day and doesn't have a clue of her emotional mother. After physical therapy on Tuesday I feel drained. Not physically the way Ella does, but emotionally. I know that we have a God who performs miracles, but as Matt Mooney says, that's doesn't mean that it's in God's plan to perform those miracles. I hold on to a prayer that was echoed Tuesday by one of the ladies at church..."that there be a complete healing of Ella"...but only if it's God's will...that's hard. God gives us our children as gifts and we are to hold them out to Him with open hands...Marian is good at reminding me of that...but it's so hard when you want to hold them close. One thing that's hard for me is that I can't "fix" Ella. There is nothing I can do. As I mentioned therapy was hard this week...we are starting to figure out alternatives if Ella doesn't walk, either when she should or ever. That's hard to swallow. We also talked about the fact that Ella is behind (an understatement) developmentally, and Kathy had to remind me that Ella isn't on the slow-end of "normal"...she's on a completely different chart of neurologically damaged. I don't want my daughter to be "damaged"!! I don't want her to struggle!! I want her to be able to play with other kids, and go to dances, and walk up the stairs, and have a great education, and have all the opportunities I had...AND MORE!! I am prideful in the things that I think are important for Ella, but that's how I feel. They aren't saying she won't be able to walk, but the further we get without her being able to instinctively hold her head up (the way we automatically breathe) is just that much more of a chance that she will have physical and learning problems down the road. Please pray for my hopeful heart. Pray for my faith in a faithful God. He has been SO good to us in our marriage and now our daughter...may I remember that daily. As we enter into this season that is about the birth of a man who saved us from all sin, may I remember that Ella's greatest accomplishment in life won't be to walk...it will be to accept Christ as her Lord and Savior. May God keep me focused on Him, when I want to focus on my wants and needs.
A verse I read tonight on the Mooney's blog and it stuck with me:
II Cor. 1:3,4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.
May we all have comfort with where God has us and where we can go with His guidance.
The Ramblings of a Andrea
Well, it's Monday morning after the crazy Thanksgiving holiday weekend. Joe is off to work, Ella is still sleeping, and I have a few minutes to catch you all up on our life. Right now, since Friday, Josh and Wendy (Joe's brother and his new wife) are in town. They are traveling around and seeing everyone as they decide where they are headed next in their ministry...they are missionaries. Thursday we went to my parents for Thanksgiving (as you can see in one of the slide shows). My family has done the EXACT same Thanksgiving for as long as I can remember and it's wonderful to have those kind of traditions. I made deviled eggs and some cranberry relish and then we loaded up the car and headed north to Richardson (20 mins from our house). We spent the whole day eating and enjoying the company of our grandparents (my dad's folks) and our cousin Robin, who came over with her kids Stephanie and Jack. It's so wonderful to have good family and my dad's family is amazing. Friday was spent getting the house ready for Josh and Wendy to come over...Joe put in a new desk handed down from his dad (Becky, this is where we both cheer!!) and the banquet table is now gone!! The office looks a lot better and it made room for the inflatable bed that we put in their for the newlyweds. Saturday we got up, I made cinnamon rolls, and then we headed to Temple, TX to go find and cut down our Christmas tree. This is a tradition that my family started when we were kids, so Joe and I have gone the last 2 years to do the same...not sure Ella quite understood what was happening, but that's okay it was a good time and a beautiful day. Saturday night we just stayed home and I fixed a pork tenderloin for dinner...I've never thought of myself as a cook before, but it's been really fun to experiment and things turn out so well. Sunday we went to church as usual and then Josh picked Pancho's for lunch. Then we all went back to the house to take naps. The evening was filled with Christmas decorating and lounging. Ella doesn't help very much.
On to what is happening with Ella. It's easiest for me to go top-down so let me see if I can remember everything. Currently her brain is in good shape. As we've mentioned before there is a lot of bruising from the seizures and that causes a deterioration of the area that was damaged. This means that her brain needs to learn to reconnect around the damaged areas. There is a chance that some places may not reconnect and that's what we are facing right now with her gross motor skills. Her eyes are getting better, thanks to the patching, and she doesn't seem to mind it at all. We still patch her for 2 hours a day and she plays just as well either way. They know that her eye sight is really bad, but they can't tell exactly to what degree till we get her lazy eye fixed. Her ears hear perfectly and she follows sound and still gets startled really easily. I'm not sure if it's because her ears are making up where her eyes are lacking (I've heard of that before) or if her nerves are just very exposed to loud noises. Her head control is still very lacking. She is learning to hold it up for a few seconds while she's on her tummy or while we hold her under her arms...but most times she has the upper body control of like a 3 month old. This is still scaring me most days. This seems to be where I start to feel defeated. As other kids are learning to sit up and can at least hold their heads up...my child can do neither for more than a minute. What does this mean in the future? I have no idea. My true fears are the thoughts of a wheelchair or long-term needs for supporting devices. I also know that the longer we go without her being closer to target on development we are fighting a more difficult uphill battle. They are talking closer to 2 years before she will walk, but the longer it takes to get there the more likely that she will have severe learning and possibly physical problems for life. When we were pregnant and even the first 24 hours after she was born, we could have never assumed that this would be our prayers for our child. It's amazing how "normal" she seems. Maybe it's because this is my normal. As others start to say things like "she'll be fine", "don't worry, some kids develop late"...I know that there is a serious cause to the slowness of her "getting it". It's not only gross motor skill...Ella isn't isn't really bothered if we aren't there. She doesn't "play" with toys and there are a lot of small developmental traits that are listed that she hasn't even begun to "get". It's just a matter of when and what to do if it never happens...which is a likely possibility that most people won't address. Joe and I cry and talk about the "what ifs" I think mostly to prepare ourselves and to be honest when it's so hard for others (other than doctors) to be honest with what we are facing.
In light of all of that I am so thankful for so many things. Ella is home and not in the hospital. She laughs and smiles ALL day long!! Ella sleeps through the night...mostly. My husband loves and cherishes me...and shows me that daily. We have a family centered around God and Christ's sacrifice for us. A church family who has wrapped us in their arms and prays for us daily. Friends who check in on us
An extended family who is always there to lend a hand...or babysit. That we have our health and each other and the knowledge that there is something better than this after we die.
Thank you for being faithful to check up on us through this blog. Thank you for loving us enough to be concerned about Ella and how we are holding up. As I think about our friends, Matt and Ginny, and their loss of a child I am reminded that we have Ella to hold everyday...no matter her health condition...sometimes I just need to remind myself of the gifts God has given me.
with love,
Andrea
On to what is happening with Ella. It's easiest for me to go top-down so let me see if I can remember everything. Currently her brain is in good shape. As we've mentioned before there is a lot of bruising from the seizures and that causes a deterioration of the area that was damaged. This means that her brain needs to learn to reconnect around the damaged areas. There is a chance that some places may not reconnect and that's what we are facing right now with her gross motor skills. Her eyes are getting better, thanks to the patching, and she doesn't seem to mind it at all. We still patch her for 2 hours a day and she plays just as well either way. They know that her eye sight is really bad, but they can't tell exactly to what degree till we get her lazy eye fixed. Her ears hear perfectly and she follows sound and still gets startled really easily. I'm not sure if it's because her ears are making up where her eyes are lacking (I've heard of that before) or if her nerves are just very exposed to loud noises. Her head control is still very lacking. She is learning to hold it up for a few seconds while she's on her tummy or while we hold her under her arms...but most times she has the upper body control of like a 3 month old. This is still scaring me most days. This seems to be where I start to feel defeated. As other kids are learning to sit up and can at least hold their heads up...my child can do neither for more than a minute. What does this mean in the future? I have no idea. My true fears are the thoughts of a wheelchair or long-term needs for supporting devices. I also know that the longer we go without her being closer to target on development we are fighting a more difficult uphill battle. They are talking closer to 2 years before she will walk, but the longer it takes to get there the more likely that she will have severe learning and possibly physical problems for life. When we were pregnant and even the first 24 hours after she was born, we could have never assumed that this would be our prayers for our child. It's amazing how "normal" she seems. Maybe it's because this is my normal. As others start to say things like "she'll be fine", "don't worry, some kids develop late"...I know that there is a serious cause to the slowness of her "getting it". It's not only gross motor skill...Ella isn't isn't really bothered if we aren't there. She doesn't "play" with toys and there are a lot of small developmental traits that are listed that she hasn't even begun to "get". It's just a matter of when and what to do if it never happens...which is a likely possibility that most people won't address. Joe and I cry and talk about the "what ifs" I think mostly to prepare ourselves and to be honest when it's so hard for others (other than doctors) to be honest with what we are facing.
In light of all of that I am so thankful for so many things. Ella is home and not in the hospital. She laughs and smiles ALL day long!! Ella sleeps through the night...mostly. My husband loves and cherishes me...and shows me that daily. We have a family centered around God and Christ's sacrifice for us. A church family who has wrapped us in their arms and prays for us daily. Friends who check in on us
An extended family who is always there to lend a hand...or babysit. That we have our health and each other and the knowledge that there is something better than this after we die.
Thank you for being faithful to check up on us through this blog. Thank you for loving us enough to be concerned about Ella and how we are holding up. As I think about our friends, Matt and Ginny, and their loss of a child I am reminded that we have Ella to hold everyday...no matter her health condition...sometimes I just need to remind myself of the gifts God has given me.
with love,
Andrea
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