True Beauty

One thing I have been so blessed to see on my journey around my figurative “Mountain” is the amazing beauty there is to behold. My “Mountain” is the disease I watch torment my daughter; Muscular Dystrophy. Today, however, was one of those moments of beauty that I wouldn’t be able to experience if I wasn’t on the Mountain. We went to Noel’s 5th Colorado Angels Pageant. These Pageants are labors of love put on by other amazing mothers who have children with special needs. It is a day to lavish love, praise and attention upon these amazing children who are fighting amazing battles. 

My heart burned with love and admiration as I saw little girls sing, dance and perform as though they had no care in the world. I was also moved by the love and selflessness of the siblings of these awesome kids. Their siblings are Angels in their own right; they sing and dance along stage with their sisters, they put tiaras on their heads and they love them so well.

The World tells us what It thinks beauty is; But I think true beauty is rising above hard circumstances, I think true beauty is smiling in the face of despair, I think true beauty is dancing, singing and smiling NO MATTER WHAT. I am blessed, touched, and humbled 

at the amazing display of True BeautyI got to see today.  

Pain

I have struggled with tooth pain for the past 12 years. Pregnancy was hard on my body and ever since I had Noel I have had tooth complications. As a child I watched my mom walk the same road; I also saw her fall into a deep depression because of her tooth issues and her having to get dentures at a very young age. I have had fear surrounding the dentist since. 

I just left the dentist after having a three week complication with a root canal, which in the end resulted in my tooth having to be pulled. The sadness and frustration I feel right now is real; I mean I know it’s just a tooth and people go through far worse things, but I can see right now in this moment how something as seemingly simple as a tooth could really cause a person to fall into sadness. Pain is real, it has become a constant companion of mine over the last 12 years, it’s just something you “get use to.” I can see how my mom, having been through a lot of other pain in life was overcome by the pain, shame and embarrassment of losing her teeth. She retreated from friends and family, it was easy to. Being alone in your pain seems easier but the truth is it’s not. When we can share our pain with those around us, they can help us. God didn’t intend for us to carry pain on our own.The second the needle finally touched the nerve that was causing so much pain I had relief, I felt amazing. Even now I sit here with a swollen cheek, a mouth full of gauze and a hole where there was once a tooth; I am free of pain. Anesthesia is good and it has a place; but how much more does God want us to be out of emotional and spiritual pain, let Him be the great physician, don’t self medicate, it will only relive the pain temporary. Let God take the pain out by the root so that you can be completely free of the pain. Then realize it doesn’t end there with a huge hole in your heart or in may case in my mouth; let your heart heal. Let Him rebuild you, allow him to replace what was causing you pain with something that is firm and solid and completely from Him. 

Dream Big!

Noel told me the other day her biggest dream in life is to walk again... 

Wow was that hard to hear and yet it was also encouraging. 

Hard because it made my heart ache that my daughter who hasn’t walked

 since she was 3 years old is now 11 and her biggest goal in life is to walk again. 

However it is encouraging that she is still dreaming!

 I thought walking was a dream lost long ago with Noel. 

 Oh how I wish I could look her in the eyes and say yes you can, 

you can do anything you set your mind to, yes Noel you can walk again. 

The truth is I just can’t; 

Me, Tina the eternal optimist can not look her in the eyes and tell her she can walk again. 

So instead I’m doing what I can. 

I have committed to start training with her, I can’t garuntee she’ll ever walk again but I will do what I can. I will push her to the next level, I will push her to more, I will push her to win the race. 

That’s what we’re going to do! Noel and our family are going to start running races together. 

Our fist race we’ll run together is the Peach Festival 5K on August 18th.

So what dreams do you have? What things can you do today to move towards that dream? 

Sure a girl with Muscular Dystrophy may never walk again, but at least she has the courage to dream.

So let Noel inspire you to dream BIG Dreams! 

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!

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 over-comers. 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, they're 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

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.

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.