First off I would like to say thank you for all of your sweet and encouraging comments on my last post. Sometimes I get in reflection mode and feel the need to put it into words to share and you all are so sweet to encourage me in that. I think since we're now going into year #2 with Ella and things are more manageable I've had more time to think. So, just be prepared to get more of where that came from. :)
Anyway, on a lighter note, here's what our Ella has been up to lately. The girl has taken a liking to Eva's scooter helmet. Actually, liking is putting it lightly, I would say she is borderline OBSESSED with it. You know how us Carders are all about safety, but really, this is taking it to a whole new level. If she spots the helmet somewhere she follows you around the house and whines until you put it on her head. AND, it must be buckled or she whines about that too. Sheesh! So high maintenance.
I'm talking morning, all through the day and night she will wear this thing. You would think for a child who had to wear a Cranial Band for 4 1/2 months she wouldn't want anything on her head. But, no, it's like an orange on a toothpick! Remember the movie So I Married an Axe Murderer with Mike Myers anyone? Remember the guy with the huge head they called "Head" but pronounced Heed? Yeah, that's Ella, Heed. Kills me. Just a little blast from the past there for ya.
So here's a little glimpse of some of what a day in the life is like...with the helmet of course.
Don't worry, got it on while we're feeding.
Sweet sister Eva keeping Ella company while she gets fed.
Working on eating some puffs and M&M's. Yeah, we eat M&M's for breakfast, lunch and dinner, don't worry about it. She loves them so you better believe I have them with me at all times, I even carry them in my purse and she gets them whenever she wants. Finally, something with calories! We might have cavities later but dog gone it we're trying to gain weight here. This picture cracks me up...not necessarily the best for promoting your child. Face all dirty, huge weird wonky helmet, shirt not even buttoned. Nice.
Just playing and "helping" mom unload the dishwasher.
Just "walking" around the house. For those of you who haven't seen Ella, she walks on her knees. Everywhere. It's hilarious. She wants to be walking so badly so she just walks around on her knees. I have it on video so when I figure out how to post video I'll put that up so you can see. It's great. Poor thing really needs some knee pads. Not kidding, her little knees are so red and chapped. I mean, look at her body/head size relation. This helmet is HUGE!
Even at bedtime we sssssttttiilll have on the helmet.
There ya go. The fun never stops around here. And don't forget about our other child. Wait, what? Is that Eva or Cruella Deville? It's not weird AT ALL that I have one child who wears a scooter helmet 12 sizes too big all day and the other one is sitting around in a bouncy seat looking all creepy in her fur coat. Good stuff I tell ya, good stuff.
I'll post on Eva next because she is one funny cat and she deserves a shout out every once in awhile. So, get ready for that because it will, as usual, involve some bathroom humor. You know you love it just as much as I do. Hey, I'm just trying to give the people what they want so don't judge. Stay tuned!
Saturday, January 30, 2010
Posted by Amy at 11:10 AM
Wednesday, January 6, 2010
HAAAALLELUJAH, 2010 is here!! Is anyone else excited to say good-bye to 2009? Anyone, anyone? Can I get an Amen up in here? Dawg, it's been a looooong, hard year. Thank you Lord for new beginnings! Lately I've been thinking a lot about this past year and all that we've been through with Ella and one word keeps coming to me over and over again and that is the word thankful. 2009 was an extremely difficult year full of many valleys and dark days but at the same time there were many mountains and blessings even in the darkness.
***Just FYI, this post has no pictures, is a bit honest and raw so if you're not in the mood for that than you might not want to read this. I guess this post is just part of me processing things and you've been with me for the long haul, the plate-throwing and so on but just wanted to give you a heads up. You're welcome. :)***
I remember at this time last year things were really starting to sink in for me that things with Ella were not going to get better any time soon and that there were some major things wrong that were going to take a long time to heal or maybe were never going to heal. I just thought that once she came home from the NICU things were going to be so much better and she would start eating, we wouldn't need a feeding tube and she would just develop like any other child. Ummm, yeah, so that's not how it went down. Things with Ella were much harder and more complicated than we knew or expected.
There was so much I didn't know about children with omphaloceles
(pronounced om-fal-o-seel) and how their little bodies are just so different on the inside than ours and what that meant for Ella. I didn't know how to help her eat or stop throwing up. I didn't know what was wrong and I just felt so completely helpless. I didn't know how I was going to wait for many more months before doctors would even begin to consider doing anything about her shoulder deformity. I dreaded going to new doctors appointments and having to explain again all of our concerns and questions and having to undress her and explain yet again, "Oh, by the way, she has this deformity, just so you know." Really, sometimes I would laugh out loud when they would ask, "So do you have any concerns?" Do I have concerns?! I wanted to say, "Well, besides the fact that she was born with numerous organs outside of her body, has a major deformity, can barely use her left arm or turn her head to that side, is vomiting multiple times a day and night, and will not eat unless she is in a dark, quiet room and is asleep just to name the major ones...umm, other than that no, nope, no concerns to speak of." But I didn't. I would just say yes, I do have a number of concerns and Rick and I would look at each other and then probably give some sort of an awkward laugh. I don't know, call me crazy. (Let's be honest, I think I was a bit crazy then. :)) Seriously? And this was only the beginning.
Those were some really hard, hard days and nights. Days that brought me to my knees. Days that were filled with exhaustion, frustration, sadness and little hope. Days with moments where I was so low I did'nt know how I was literally going to pull myself off the floor and stop crying. Most nights I was up almost every hour until we were blessed to receive night help three nights a week. Rick was going to bed early and getting up early so he could take over monitoring Ella so I could get at least a few hours of uninterrupted sleep before he left for work. For several months I would have nightmares from time to time or wake up and just cry because it hurts so badly when you have a child that struggles so much. Those were nights I had a hard time catching my breath...even out of a dead sleep. I don't know that the word hard even comes close to being able to describe what every day and night was like.
A word that does describe my feelings, again, is thankful. I'm at the point now that I can look back and honestly say that I'm thankful for 2009 even though it was by far the worst year of our life. I'm thankful for some of those dark times. Don't get me wrong, I'm soooo thankful that 2010 is starting out much brighter and that I feel like there actually is light for us. But, there is something to be said and many things to be learned when you're in the darkness. I much prefer brighter days and don't want to spend much time in the black tunnels or relive any of what we've been through. BUT, the Lord is amazing in how He gives us treasures that can only be found when you're in the dark. They can be very simple things, sometimes big things and sometimes not even tangible things. Sometimes the treasure was in the moment I was curled up in a ball on the floor crying unable to stand and finally I would hear His soft voice saying, "I'm here, I love you, I know it's hard but it's going to be okay. You will see." And somewhere not out of my own strength but out of His I was able to get up, look in the mirror and say His name out loud and I felt like I had the strength to face the day. A verse that a friend gave to me comes from Isaiah 4:3and it says, "He will not break a crushed blade of grass or put out even a weak flame..." I felt crushed and weak but this verse gave me strength many days that even though I felt like was just being kicked while I was down, He would not let me go. What a treasure. He is alive and working and never leaves even when it's dark and quiet and we're wondering if He's listening at all.
There were so many days that I was just making it hour to hour and a sweet friend would show up at my house unexpected to just sit on the couch and offer encouraging words. Others would come and play with Eva, do my laundry, straighten my house or come with arms full of groceries or a trunk full of diapers. Wise friends and elders would come month after month to help us process what we had been through and how they could help us survive and move forward and function as a family. Others would write encouraging notes, send gift cards, and call week after week just so I knew I wasn't forgotten in this struggle. We were supported in every way...spiritually, emotionally, physically and financially. Everyone just dove in. Just jumped into our life and opened their hearts and eyes to what the Lord was putting on their hearts to do and just did it. We certainly didn't know what our needs were because we had so many and were so overwhelmed but our sweet friends and family just did for us and didn't ask.
I'm thankful because in those dark times I learned more about the Lord and how much He loves me and cares about my little insignificant problems that seem so big to me. Sure, there were days that I can honestly say I was angry at God and I didn't want to talk to Him because I had no idea what to even say. I didn't want to even open my Bible and I didn't for a long time. But, He was there and showed us by giving us friends, family, and even people we didn't know that reached out to us as His hands and feet. I'm thankful for the good times too. Many prayers have been answered, some the way I wanted and some not, but they most definitely were answered. I'm thankful that I have an amazing husband and two beautiful daughters. I'm thankful that I live in a city where I have expert medical help within driving distance. I'm thankful that I finally feel like we're able to sit and enjoy our children. We can go to the park as a family. We can go on walks, play together after dinner or go visit grandparents. These sound like normal, simple things and they are but they weren't for us for so long. We could not do these things up until the last couple of months since Ella is doing so much better so the little things are big to us and we don't take them for granted now and I hope we never do.
I feel like the world will forever look different in my eyes because of Ella and because of what I learned about myself, others and the Lord in 2009. It's been life changing. I'm hopeful that 2010 will be a better year for our family. I believe the Lord has great plans for us and because of what we've gone through with Ella, we will be more prepared and refined to be used by Him. I'm excited to see what He has in store for us this year. I know I have a lot of surrendering to do, a lot of listening to do and a lot of getting to know Him more.
Thank you for walking beside us this year through the good, the bad and the ugly. Your prayers, encouragement and support have kept us afloat. We consider you some of our treasures in the darkness. Thank you! Please keep praying for Ella.
I'll lighten the mood next post and include some pictures...promise!
Posted by Amy at 9:31 PM