Thursday, September 24, 2009
Another Kind of Miracle
I've had these thoughts rambling for many days, and only hope and pray that I can convey in words what has filled my heart. And, I promise if you can stick with the story long enough, you'll enjoy the video that follows. Somehow, God has used the words of a Barbie song to affirm his love for me.
I determined from the beginning of this blog that I would be transparent. I wanted the world to know that God is good, He is the helper of the fatherless, adoption is His idea, but everyday is not easy. I have prayed from the moment we committed to adopting a little girl with spina bifida that God would manifest His glory in and through our family.
Learning that Ellie would have to use a catheter up to 5 times a day came as a big blow to me. I look back at that day now, and the days to follow, and I can say those days were some of my lowest ever. There have been few times in my almost 45 years when I have sunk as low. I was devastated. In some ways, I was numb. I wouldn't talk about it. I tried not to think about it. I was disappointed. Though I knew of the possibility, I really thought we would have other options to consider.
But, today, I can truly say, "God's grace is sufficient." I am amazed at the peace I have now. I am amazed that I am pretty good at inserting a catheter now--me, Robbie, 4th grade school teacher, NOT-the nurse--me. I can do it. That is Jesus.
I am amazed at Ellie's attitude towards the change. Ellie. Stubborn. Strong-Willed. Determined. Independent. She goes to the potty most of the time, willingly, to do what needs to be done. She is proud of her pee pee that goes into the potty now, rather than her pull-up. She is proud of her panties when they are dry. That is Jesus.
But, then I think...Why am I amazed? I can hear Jesus saying, "Oh ye of little faith?" He has promised never to leave me or forsake me. He has not forsaken me and He has not forsaken Ellie. I have learned that, before learnign to use catheters, many adults with spina bifida have a shortened life span due to kidney failure. I was speechless again when I considered this thought...had Ellie remained in China, she would likely never received the diagnostics that would determine cathing was necessary to protect her kidney. God brought her home to us to give her LIFE!
And, while I am not super spiritual, and I, in my flesh, find it impossible to live a life that shouts, "In everything give thanks," I can thank him for the storm that began 2 weeks ago. I'm not ready to thank him that my Ellie has to use a catheter 4 or 5 times a day. I would still pray for a miracle that her body would be healed. But, I'm beginning to wonder.
Perhaps, he has performed a greater miracle.
Ellie's medical condition has not changed. But, God has changed me.
In my total inadequacy, he equipped me to do what I needed to do. Truly, I am NOT nurse material. I don't like blood. I don't like guts. I don't like CSI. I don't watch much of the Discovery Channel. I leave the room if Stan is watching Operation.
But, in the beginning, I would walk into that bathroom and say, "Jesus, hold my hand." In only a few days, I was not freaking out about the idea any more. In a week, I was pretty good at it. In a couple of weeks, it already feels "almost" routine. His strength has truly been PERFECT in my weakness.
And Ellie...Ellie has this promise. God is faithful. He will not allow her to be tempted beyond what she can bear, not today, not tomorrow, not ever. He has already provided for her a way to stand against the temptation...the temptation to give up, to temptation to give in. He created her...fearfully and wonderfully. He gave her every ounce of tenacity that sometimes drives her mother insane, and more often her daddy. But, that same tenacity given to her by Him will allow her life to bear witness to God's promises. He will use his perfect creation in her to bring Himself glory.
And, I, get to go along for the ride.
Won't you join us?
(Scroll to the bottom and pause the sound of the play list player.)
Monday, September 21, 2009
Prayer Closet
I am getting ready for bed, with a stop at the prayer closet, but hoping the LORD will direct a few precious prayer warriors to our blog tonight before they go to be as well.
Please pray for our friends, Brad and Terry. They brought their son Asher home from Haiti today. They had to take him directly to the hospital. You can read more about their family here.
And, please pray for Katie. Her testimony is amazing, but the enemy is attacking. Please help pray the God would intervene on behalf of her family, which includes 13 precious daughters in Ugana.
Please pray for our friends, Brad and Terry. They brought their son Asher home from Haiti today. They had to take him directly to the hospital. You can read more about their family here.
And, please pray for Katie. Her testimony is amazing, but the enemy is attacking. Please help pray the God would intervene on behalf of her family, which includes 13 precious daughters in Ugana.
Thursday, September 17, 2009
Pray BIG Prayers for Zoe
This is Zoe. We met her last week at the Ronald McDonald House when Ellie was going to Nemours for her urological testing. As I found myself discouraged over Ellie's news, I also felt a surge of guilt. Ellie can face tomorrow with bright hopes. Zoe's future is uncertain.
Zoe has a rare from of cancer, Ewing's Sarcoma. I implore you to pray for her and pray diligently. She faces much more aggressive treatment, but continues to smile and encourage others. Her tenacious spirit makes me think of Ellie.
Please click here and visit her blog. Leave her a message, and tell her Ellie's mom sent you to her blog. I'd love for her to hear from more people all over the country, praying fervently for her.
Thank you, Jesus, for allowing me to be touched by the strength and courage of Zoe!
Saturday, September 12, 2009
Guess What!!! and Guess What!!!
Ellie's meds have kept her dry for the last 24 hours, so tonight she's wearing panti*s for the first time!!! (Complete with Poise pads just in case.) She is a little proud. Can you tell?
Guess what else?
Have you tried guessing yet?
Tonight, when it was time to use the catheter for the last time, Ellie asked, "When can I try to do it myself?" So, I told her she could try, and then I would finish up if it didn't work.
Well my four-year-old inserted her own catheter and proudly proclaimed she was pee-peeing on the potty!
What a difference a day can make in my spirits.
Thank you for all of your prayers!
Friday, September 11, 2009
We Did It!
Our first attempt was successful. That was only a minimal amount of drama. I didn't miss, so no extra poking.
And, I made the mistake of sitting Ellie on my legs in the floor to cath her. Yeah, I know, silly me! So, I've got to find another pair of pants to wear to the ball game tonight. ;)
And, I made the mistake of sitting Ellie on my legs in the floor to cath her. Yeah, I know, silly me! So, I've got to find another pair of pants to wear to the ball game tonight. ;)
Thursday, September 10, 2009
A More Detailed Update
Hello My Friends,
I wanted to let you know that we received news I did not
want to hear yesterday. I must admit discouragement today. I
know that God's grace is sufficient and we will make it, but
for today, I am weary.
Urology:
It seems that Ellie's bladder is working too hard when it empties.
While she does void without assistance, this extra pressure
puts too much pressure on her one and only kidney. The good
news is that there is no kidney damage at this time. The
difficult for mama to swallow news is this:
Ellie will start taking medication to relax her bladder.
THis will allow her bladder to fill, but she will no longer
be able to urinate; therefore, we must start using a
straight cath up to 5 times a day. While this is common in children and adults with spina bifida, and I knew it might happen some day, I suppose I was not prepared for this news yesterday. I really thought there may be and trial and error period with the medication and timed voiding. I was surprised, I guess, that we would go immediately to cahting.
Stan and I had to learn
to do that yesterday. It was NOT< NOT< NOT fun. I had to
"practice" a medical procedure with my 4 year old child as our
dummy. I learned that she does have much more sensation that
we first realized, so she was in pain as Stan and I poked
and prodded while learning how to insert a catheter. Now, we
come home to do this, without a nurse to guide the way. AND, I
have to instruct a school staff member to do this as well,
because she will need to cath at least once a day while she
is in school.
Yes, the news could be worse. Yes, she will learn to do it
herself one day. Yes, one day it will just be second nature,
like putting on socks, or just going to the bathroom...but
for now I am down.
I know that God's grace is sufficient. I know that I can do all things because Christ gives me strength. I know that Ellie was fearfully and wonderfully made. I know this news is about Ellie, not about me.I know that God entrusted her to us!! I know that God placed me in the family of God so that we could support one another. Thank you for the prayers you've already prayed. Please keep them coming!
I wanted to let you know that we received news I did not
want to hear yesterday. I must admit discouragement today. I
know that God's grace is sufficient and we will make it, but
for today, I am weary.
Urology:
It seems that Ellie's bladder is working too hard when it empties.
While she does void without assistance, this extra pressure
puts too much pressure on her one and only kidney. The good
news is that there is no kidney damage at this time. The
difficult for mama to swallow news is this:
Ellie will start taking medication to relax her bladder.
THis will allow her bladder to fill, but she will no longer
be able to urinate; therefore, we must start using a
straight cath up to 5 times a day. While this is common in children and adults with spina bifida, and I knew it might happen some day, I suppose I was not prepared for this news yesterday. I really thought there may be and trial and error period with the medication and timed voiding. I was surprised, I guess, that we would go immediately to cahting.
Stan and I had to learn
to do that yesterday. It was NOT< NOT< NOT fun. I had to
"practice" a medical procedure with my 4 year old child as our
dummy. I learned that she does have much more sensation that
we first realized, so she was in pain as Stan and I poked
and prodded while learning how to insert a catheter. Now, we
come home to do this, without a nurse to guide the way. AND, I
have to instruct a school staff member to do this as well,
because she will need to cath at least once a day while she
is in school.
Yes, the news could be worse. Yes, she will learn to do it
herself one day. Yes, one day it will just be second nature,
like putting on socks, or just going to the bathroom...but
for now I am down.
I know that God's grace is sufficient. I know that I can do all things because Christ gives me strength. I know that Ellie was fearfully and wonderfully made. I know this news is about Ellie, not about me.I know that God entrusted her to us!! I know that God placed me in the family of God so that we could support one another. Thank you for the prayers you've already prayed. Please keep them coming!
Wednesday, September 9, 2009
Not the News We Hoped For
That was how our day went. I will post more details later. I'm just overwhelmed right now. Ellie's new status is not life-threatening, but I am discouraged. Please pray for us.
Friday, September 4, 2009
Ellie's Big Day---Please pray
Hey Friends,
We have a crazy week next week.
Ellie has an appt in Tampa, FL on Tuesday.
Then an appt in Jacksonville, FL on Wednesday.
We'll leave on Monday, spend the night with my cousin in Tampa, go to Shriner's, leave TAmpa, go to JAX, spend the night at the Ronald McDonald House and finish up on Wednesday.
Tuesday:
We'll meet with the orthapedic surgeon for a check up on her hip. Ellie's new PT, whom I am loving, and whose services are through the school system, so her services are free....is recommending forearm crutches rather than her walker. She thinks this will help Ellie's legs continue to strengthen. We'll talk with the dr about this also.
Wednesday:
BIG day. We go through all of the urological testing again, yearly is typical for SB patients. We'll learn how well her bladder is functioning, and determine if now is the time to start medication to calm her bladder and attempt potty training of some sort. Please, please pray for this day. I so desire to see Ellie able to control her bladder. She has not yet commented or led me to believe she realizes she is the only child in her Pre-K class who still wears pull-ups. Pray that I can continue to remind her that God made her special. Pray for my peace on this day. These tests and uncertainties have made me the most anxious in the past.
Ellie is so blessed to have so many prayer warriors lifting her up!
Robbie
We have a crazy week next week.
Ellie has an appt in Tampa, FL on Tuesday.
Then an appt in Jacksonville, FL on Wednesday.
We'll leave on Monday, spend the night with my cousin in Tampa, go to Shriner's, leave TAmpa, go to JAX, spend the night at the Ronald McDonald House and finish up on Wednesday.
Tuesday:
We'll meet with the orthapedic surgeon for a check up on her hip. Ellie's new PT, whom I am loving, and whose services are through the school system, so her services are free....is recommending forearm crutches rather than her walker. She thinks this will help Ellie's legs continue to strengthen. We'll talk with the dr about this also.
Wednesday:
BIG day. We go through all of the urological testing again, yearly is typical for SB patients. We'll learn how well her bladder is functioning, and determine if now is the time to start medication to calm her bladder and attempt potty training of some sort. Please, please pray for this day. I so desire to see Ellie able to control her bladder. She has not yet commented or led me to believe she realizes she is the only child in her Pre-K class who still wears pull-ups. Pray that I can continue to remind her that God made her special. Pray for my peace on this day. These tests and uncertainties have made me the most anxious in the past.
Ellie is so blessed to have so many prayer warriors lifting her up!
Robbie
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