Thursday, November 17, 2016

Happy Birthday Noel!

10 years today? Has it really been 10 years since the start of this Journey? 10 Years ago today I became a mom for the first time. I met Noel. My life has never been the same since 11-17-2006. I know any parent can lay claim to those words, “my life changed the day I had my first child.” But literally everything I knew of life changed that day. Noel was born through a c-section, when she came out she didn’t make a sound. That was my first inclination that something was wrong, but then when all the nurses and doctors were silent too, that was my second clue that something was very wrong. As a woman you dream of the day you meet your babies, you get to know them for 9 months in the womb and you can’t wait to meet them and hold them. You play out what the delivery room will be like, full of excitement, joy, noise and crying. When none of those things take place you know something is not right. Over these past 10 years every part of who I am has changed and been challenged. When you are told of countless surgeries and procedures your child may have to have and then you watch them endure every one. When you’re told your child might not walk and 10 years later you watch your daughter drive herself around in a wheelchair, unable to walk. When you’re told your child might be on a ventilator the rest of her life, and the constant noise of a machine breathing for her is the same noise you’ve heard every single time your with her for the last 8 years. This is when you are challenged. I would say my Faith has been the number one thing that has been challenged and refined in these last 10 years of Noel’s life. I have had to come to such a deep place with God in order to choose joy in the circumstances. To give complete and total control to Him. To pray for healing when you don’t see it; yet to still have Faith that God can heal. To not try to think of the “what if’s” and try to not grieve the “what nots.” It has been a hard, challenging, sad, frustrating, divine, deep, priceless, beautiful journey. Noel has changed me. I am better because I am her mom. I love more deeply, I see life more precious and I have a deeper Faith than I knew possible. Noel’s life has taught me so many lessons, but probably the most meaningful is how we deal with circumstances in our life is a choice, we don’t have to be a victim to our circumstances we can choose to be an overcomer. So I challenge you today on Noel’s Birthday, choose to overcome something in your life. Choose to not let your circumstances define you, but choose to see it through the eyes of Faith and overcome it. Happy Birthday Noel, thanks for making me a better person!

Wednesday, January 21, 2015

Choose Joy.

I've been reflecting on this thought lately. I have a friend who was told she had a year to live because her cancer had progressed so much. Her and her daughter have taken that year and done countless things to "Choose Joy" including dressing up for Chemo treatments; it's been a very inspirational story to watch unfold. But yesterday I realized I have had a front row seat watching an inspirational life unfold, a life titled Choose Joy; her name is Noel. Noel had an appointment yesterday for her scoliosis, sadly her back is still really bad. The surgery she got 2 years ago where they put two titanium rods on either side of her spine has been life changing. She for the most part is and has been doing amazing because of it. Her back was very "straight" for a long time. But now over time her Muscular Dystrophy has progressed… it's made it so that she's not even strong enough to hold her head up, thus she sits hunched over just to try keep her eyesight level. Yesterday was a follow up x-ray. The doctor confirmed what we already knew; her scoliosis has progressed and there's nothing they can do about it. As I sat yesterday and looked at before and after x-rays of Noel's back I was sad. Sad that her little body is so deformed, sad that this is her reality, sad that it's getting worse. Then part of me felt a little silly why am I so sad for a little girl who doesn't let her limitations define her? Why does a picture of a crooked back bring me to tears? When the story of her attitude is so much bigger?
I truly believe that God did not give Noel Muscular Dystrophy; Noel has Muscular Dystrophy because when the fall of man happened sin and sickness entered into this world. I don't believe that God brought this into her life to teach her or us a lesson. God is a good God; He loves us. He is the reason that Noel lives a life of victory. He brings the Joy. This is a truth about God I've only come to know within the last two years, before that there was a part of me that thought maybe God gave Noel this disease to strengthen us, to make us the people we are today. Thankfully I had a revelation of the Love of my Father. He gives us what we need to overcome. He has a perfect will for our lives but because of sin and sickness it doesn't usually play out in His perfection. I don't believe He brings disease or even failure to teach us lessons. Even the Israelites; God wasn't leading them to the desert, He was leading them to The Promise Land; but because of sin and unbelief they found themselves in the desert. They missed everyday when Heaven rained down in the form on Mana, when God brought them everything they needed, when God made a way for them to Choose Joy. So really it's up to us. God has provided each of us a way to Choose Joy; to be overcomes. Why is it that sometimes those with the most to bear, the ones who could give up, get discouraged, be bitter with life and we'd all understand it; why are they the ones who don't, their the ones who inspire us with lives of overcoming? How can we allow these examples of overcoming lives help us to Choose Joy in our own lives? In our week? In our day? How can you in honor of Noel Choose Joy today?
I just had to share this video of Noel singing "I've Got the Joy" she was about four years old and just got out of the hospital after she was the sickest I've ever seen her; She Choose that day to sing of Joy; she's really quite so it may be hard to hear her but she's belting it out as loud as she can!
Noel's Got the JOY

Friday, March 22, 2013

Good news & Prayer needs...

Noel's doing ok not great though. She had a rough night on her ventilator and is not blowing off enough CO2, they're making some changes this morning to see if it helps. She did get moved to the 6th floor yesterday, but if they can't get her breathing better they'll have to take her back to ICU. please pray for her breathing to get better, also continued relief from pain.

Thursday, March 21, 2013

It's a Miracle!

I haven’t fully grasped what really happened yesterday. I was so focused on just seeing Noel when surgery was done, making sure she was ok, talking with my little girl; that the reality of how much life changed yesterday did not fully sink in. Truth is I still think it will take a while for me to grasp the miracle that took place in the operating room. I think sometimes we think of miracles as something that happens in seconds, when in reality it’s something that happens over time; when God takes the impossible and makes it possible. Before yesterday Noel’s life was definitely limited, every day she was getting worse, her organs were slowly getting crushed, her health was in jeopardy. Walking was not her number one goal in life, just being able to get out of bed each day became the goal. Now today as I look at my precious girl, asleep and free of pain for the moment, I think about her life… That she has the chance to live! Her days are not number by her poor health now. She has the potential to live a full and “normal” life (obviously the word normal is pretty subjective I just mean a life where she has the opportunity to be who God created her to be.) I would love if this surgery made it possible for Noel to walk and dance, but the truth is you can have a full life in a wheelchair. I know God has a plan to heal Noel completely, but I don’t want the events of yesterday to be overshadowed by the presence of a wheelchair in Noel’s life. God made a way for a miracle yesterday and I know it. Noel is healed!! And she will only continue to improve and accomplish more milestones! She will stand and I believe she will Walk!! I am in awe of the extravagant Love that God has for me, Noel and all of us! He loves us! He has a plan for healing and good and not for harm. He is able to do exceedingly abundantly above anything we can think imagine or dream!


We still haven’t heard Noel’s voice, but she has a lot of swelling in her throat still, I also think she needs to retrain herself to talk through her vocal cords; she has whispered her whole life and when you whisper you don’t use your vocal cords. So keep praying for that, I still believe that she is healed! Continue to pray for less pain and no infection. Thank you so much for joining us on this journey.

Wednesday, March 20, 2013

Surgery Update

Noel's surgery today went great! She is in alot of pain so you can continue to pray that will get better.  The curve in her spine went from 85 degrees to 30 degrees with this surgery (the lower the number the better!) Her heel cords have been lengthened and she'll be in casts for a month, but she should be able to stand again (something she hasn't been able to do in almost two years)! Her tonsils and adenoids have been removed; with all the swelling it's hard to tell if the vocal cord injection worked so please keep praying for her voice. Thank you to everyone who is praying and supporting us. And a big thanks to all the family and friends that we're able to be with us today, you'll never know just how much that meant. Overall all of the prayers have been heard, so keep praying!

Monday, March 11, 2013

Grace...


The Lord gently reminded me this weekend about His amazing Grace! I don’t have to fear the future; the what if’s and the unknown’s about Noel and if the surgery will “work;” I don’t even have to fear the 10 days I’ve been worried about because His Grace will be there with me. When we look at situations in our lives some things seem pretty scary and unknown, especially when we look at them through the prospective of our natural circumstances. But when we fix our eyes upon Heaven’s realities and the simple fact that God’s Grace is sufficient in ALL things than we can have complete Peace. I guess I’ve forgotten what our other hospitalization have been like, I’ve remembered the stress and worry, but forgotten the crazy grace that filled every moment of every step making it all possible. I hope you can remember this today, in all things His Grace is sufficient. Don’t look at the things in your life and fear the future; His Grace isn’t in the future, His Grace is right now. And when the unknowns of the future come, His Grace will be sufficient in those places. I hope today you can be filled with His Amazing Grace and that it brings you complete Peace.

Tina

Monday, March 4, 2013

Friends

I felt the need to write a post about how much friends mean to me. I want each of you to know what a treasure you are to me in my life. I cannot do this alone. I can’t get through the things I have to face alone. I know sometimes it may seem like I’ve got it all together and maybe you don’t know what to do for me. Just please know I don’t have it all together. There are days that I feel lonely and sad, days that I feel isolated by the fact that I have a daughter with so many needs. Some days I miss out on life cause it’s easier to stay home alone than to accomplish the task of taking Noel somewhere. It’s really hard to take Noel places; hard but not impossible. But there are times when I choose to stay home because I just can’t do it. There are times I look at other families and wonder how much different life looks for them. I wonder what I would do if I could just jump in the car and run an errand with my 2 six year olds and seven year old. The groups we may be a part of, the extra activities we’d be a part of: Girls Scouts? Basketball? Soccer? The truth is even Lily and Landen miss out on things because of Noel’s extreme needs. It’s hard to commit to get your children to an activity when you don’t even know if you can get out of the house. It’s a daily task just to get Noel out of bed. I’m sharing all of this to say, I need help. I need friends. I need people who don’t know what to do for me. I don’t even know what I need all the time, but I know I need you. I need encouragement, laughter and most of all friendship. I know how it feels when you think, “oh she must have so much support, she doesn’t need me.” I know because I have a dear friend who has thousands of people following her story, sometimes I feel like what do I have to say or do that everyone else hasn’t already done. But then I realize she does still need me and my friendship and encouragement. God brought me into her life for a reason and even though I may not understand all that she is going through and may not have any magic words, she still needs me. So yes I need you. I’ll need friends and help through this upcoming surgery and beyond. As my belly starts to grow too big to pick up Noel on my own… I will need you. When I’m tired and overcome with emotion through Noel’s surgery… I will need you. As I try to raise a new born while still taking care of all Noel’s needs… I will need you. Please don’t feel like you’ve done anything wrong or haven’t been there for me. This is more of me letting you in and giving you permission to be there for me. I don’t think anyone has done anything wrong. I just felt the need to express my heart to you, to let you know that this isn’t easy, I don’t have it all together and… I do need you.
-Tina