Good. Great.
I can't belive it's been a year. A year ago today I couldn't breathe because my life was so turned upside down. I still feel that way. I sat in my car on Monday and cried. It's hard. It's hard to know that my daughter is SO different from other children her age. It's amazing to know that we should be chasing her...and we stuggle to hold her because she's heavy and so not in control of her body. I can snuggle my child, but I wish she would start to venture out on her own. She doesn't cry, which is so great, but I wish I knew when she hurt, or was hungry, or just felt anything. She laughs, she smiles, she "talks"...but I want more. I want to chase her. I want to complain that she wears me out. Haha, I want to lose weight because I have to keep up with her. I want her to get frustrated that she can't walk or sit...and because of that frustration she tries harder. I want to be able to take her to a store and put her in a cart so I can grab groceries or just some stuff for the house. I want to be able to stand and talk to my friends with my daughter on my hip...instead of her breaking my arms and back. I want her to laugh when we tickle her...because she can feel it. I want her to make a mess in a high chair and make me spend all day cleaning it up...because she's allowed to eat the food. I want her to throw a sippy cup...because she's allowed to drink out of one.
I want a lot. It's hard to remember that I'm supposed to desire that God be glorified out of this situation we've been given. It's hard to align my heart with His when my heart breaks for Ella. I have to take myself out of the equation...and it's hard because I'm so selfish and self-centered...ask anyone. It's always about me or how things are going to effect me...this effects me and yet I'm not who is important. This is my life, but it's the life I've been given. Why have I been chosen for this? I'm not strong. I'm not patient. I'm not good at things like this. I need to be reminded that it's really not about me at all. Have you ever felt completely out of control. Like no matter what you could do as a human...it wouldn't be enough. I know that there is NOTHING humanly possible that I can do to "fix" Ella. I can't take her to a certain number of doctors...or even have any doctors do anything to her. This is how God created her and we can work with her to correct it, but there are no guarentees.
"I can do everything through Him who gives me strength" Philippians 4:13
This doesn't mean that God will give me the strength to endure these trials without any scars, but that I will do it with His strength, even on the rough days. There have been times when I have walked away from God, beside God, and times when he has carried me...I think right now I'm going to enjoy being carried through this because I don't think I can take these steps alone.
8 comments:
Yes, I know you want more for Ella. But you have to thank God that He gave you such a happy baby, such a pretty baby girl. This would all be so much harder if she did cry all the time because she could feel pain and suffering, if she could feel frustration. God has blessed you with the sweetest baby girl around and He so easily could have taken her May 11th. You know it, I know it, and everyone that knows Ella knows HE spared her and HE has plans for her life. You have always looked at the glass as half empty, not half full. Ella is a half-FULL glass. I only see good things ahead. They may come slowly, but I have faith in God that He will deliver to us a happy, healthy girl that will give you a run for your money. She may never be all she could be had she not gotten sick, but without the trials ahead of her, the "well baby" would never have the blessings God will bestow on her because she is His instrument. Look at her pulling up...and I know she can stand. The more we all work with her, the stronger she will be. As you say your prayers for Ella during the day (when you are not in a doctor's waiting room) work with her to help build her strength and thank God that she did not die, and she does not cry all the time (she DOES cry) and is actually the happiest baby I know. She smiles when she sees Mimi and I can tell she identifies me know BEFORE I speak. This is another step forward! Look at her steps forward, and do NOT compare this gift from God with another baby in this whole world. The days of chasing her, and picking up after her, and begging her to clean her room will come soon enuf. You will reach a day when you will give your left arm to have her say "hold me Mommy" or want to snuggle with you. Enjoy every moment she wants to snuggle. That is the time God is giving you to bond with her that you were deprived that first month of her life. "Be Happy"...be happy for who she is. Sara and I were discussing happiness last night. Sometimes, it is when Micah is his happiest that pulls her out of her low spots. And when he isn't, all the weight of the world comes crashing in on her. Ella sleeps, and will eat once we get some things fixed, and is happy because she doesn't know to not be happy. Don't give her a reason to think she has a reason to be anything but happy.
I love her just the way she is. I love the way she snuggles, and says I love you, Mimi (ok, so she can't say Mimi...yet) Do I understand your frustration, yes, but pull yourself up and look at how far you have come, not where you want to be. Know that we, your family, support you and stand behind you. If you and Joe want to have time together, let's set up a Saturday where she comes to Mimi's house to play, and go shopping (we have two car seats now) I know Joe wants to spend his Saturday with her, but if you can get him to go do something with you, just you, then let me know. Sara and I will take her (GrandPa too, when he gets back) Sometimes you just need a break from the angel to appreciate her. But Ella = joy!!!!!!!!!!!!
((((((Andrea)))))))) Hugs to my sweet sister in Christ. I have nothing to share or advice to give. But I am here to listen and pray and encourage. I love your transparency. You have ministered more to me on your bad days than I've been ministered to by others on their good. And I think that's the point.
Love,
Andi
I don't know you but it is good to hear/read your frustrations. You are not being selfish at all, you are being human. If venting is what makes it possible to get through your day with your beautiful daughter then go for it. If you try to deny your disappointments or your frustrations then you are denying a part of this experience of LIVING. Part of exploring and building faith means dealing with, not pushing aside or denying frustration.
Andrea, You have permission to feel and express those feelings. It's part of what makes you human.
You carry a heavy load as you lighten other's by aiding them in their struggle to understand why they, as you and Joe, were so chosen to have a special child. I admire you. Continue to let it out...
Andrea - I don't know you, but I do read your blog at times. Though there are many things that your daughter cannot do, she looks so happy! I can't help but think that she knows the love of the Lord Jesus Christ because it is expressed to her through her loving parents who seek Him and have accepted this next step in their lives because it has been filtered through His Almighty hands. I have a younger brother who was born premature by three months - he was barely over two pounds when he was born and was in the NICU three months. When he came home he wasn't even five pounds. There was A LOT he could not do. He was attached to a heart monitor that constantly went off because of his heart rate. He struggled to learn to walk - he was almost two when that happened - and he had difficulty learning to talk. But, there wasn't a moment that my parents, my other brother, or I couldn't see that God was in control. He is fifteen now and fine. Why he had to endure all that initially, we don't know. But, we were able to see God in control through each day and we learned - though it was hard - to praise Him for the good and the not so good. I am reminded of John 5:1-18 and the lame man that wanted so badly to go to pool of Siloam. Jesus told those that were watching that "My Father is working until now, and I Myself am working" (vs. 17). It is okay to be upset - I would be, too. Even while in a variety of emotions you are still held in the hand of your Heavenly Father (John 10:28) and nothing can snatch you out of His mighty hand - illness, emotions, or whatever the future may hold. You and your family are in my prayers. You have a beautiful daughter who has a wonderful smile and gorgeous curly hair!
Andrea, I just wanted to say that I am touched. I, too, have followed Ella's story... through your blog (by way of Amy's), Linda and others. I pray for you, Ella and Joe. I know my words don't do justice, but be comforted knowing that we all offer up prayers on your behalf. Stand firmly when you can! Lean on family and friends, along with Christ, and all will be as He plans. Even if it doesn't seem like it some days, He knows what He is doing. :) Trust. Hope. Love. Pray. That's all any of us can do!
Stephanie De
i knew when i began to read the first comment it was from mimi! she is such a great grandmother and a blessing to you. i hurt for you and appreciate your desires and frustrations. you have the right to have those thoughts and express them - then wake up another day and feel blessed all over again. the progress will be slower but the bouquets sweeter. you want ella to do so many things but right now she just wants you to love her and brighten her days! the pictures show how happy she is and how much she reflects the love you and Joe have for her. and your mom is right - getting away from ella (or alyssa from liam or jenny from ellaiden) makes you appreciate them even more. and it is something MOMS need since dad's "get away" every day. hang in there - us grammas see things from a different perspective some 60 years down the road. we love you and your sweet family. and remember, the tears you shed for ella are a gift from the Holy Spirit - tears of compassion as well.
Andrea,
Thank you for your honesty. God wants you to pour out your heart, every piece of it, to Him. Yes, it is all about Him and how He should be glorified through this, but He knows exactly how you are feeling.. the frustration, the heartache, the tears... and He can be glorified even through those things. Let him comfort and carry you through this because that is what He wants to do. He has amazing things in store for all 3 of you! I know you know these things already... I just wanted to reiterate them. I'm praying for you!
Rebecca
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