What a week it has been! Getting in all of the 6 month checkups and dentist visits before the new year has me wore out! I haven’t blogged in a while. I wish I was disciplined enough to just sit down and do it more often. I think it is therapy I need! 🙂  I wanted to share some things we have learned over the past few weeks. It has been a roller coaster of emotions again for me.

I think I should start with what we have been studying at church. The book of Esther. Now if you know anything about Esther you know she was in a place that she maybe shouldn’t have been according to the world but she was placed there by God. And when it came time to do what she was placed there for all she had to hear was perhaps you are here for such a time as this! If you aren’t willing then God will use someone else. Ok, so that’s paraphrased but that’s the just of it. I know that it isn’t by chance that we are studying these scriptures at this time in my life. God knew I needed to be reminded that He is in control and I just have to trust Him to see us through. Just as Esther trusted Him and did what she needed to do save her people. I need to trust Him if I want my life to bring honor and glory to Him.

Now, onto our story. For a couple of months now I have noticed Natalie being really winded and fatigued when exerting energy at all. She had got to where she didn’t even want to walk around the store with me. If she went inside the store she would find a place to sit down or just plop down in the middle of the isle. She had even said she wanted to start using her wheelchair when we went into the store because she was getting to tired walking around. We had been told that if her scoliosis got to bad that her lungs could be affected. So, I decided to take her to the pulminologist to see how her lungs were doing. We found out that her lungs were functioning at about 75%. The doctor said that between weak muscles and the scoliosis that her lungs just didn’t work like they should. He told us that we should talk to the ortho doctor again and should maybe start considering spinal fusion surgery. Ugggg….

I am so thankful that we have the best doctors in the country right at our fingertips. A few words on an email and I’m in contact with one of the most knowledgeable doctors about FA in the country. I told him about what had been going on and about Natalie’s 41 degree spinal curve. He said that would be a number that we would start considering intervention with surgery because in FA the spine won’t stop moving when they stop growing like with other types of scoliosis. That WASN’T at all what I wanted to hear but OK Lord, help me remember your in control! We have hoped and prayed that we could somehow avoid this surgery. There are so many horrible stories about it and it’s just stinkin scary! Especially for a fragile little girl like my Natalie.

I knew that I needed to start talking to Natalie about the possibilities of having to have surgery. This was a scary step for me. I had been afraid of it for so long but if I needed to get prepared for it then I needed to be ready to answer any questions she may have about it and be ready to answer her questions without falling to pieces. Well, I could try!! 🙂  I told Natalie what I had learned from the specialist. She was a bit taken back. She said “but they keep telling me that it will stop in a another year”! Then I have to explain to her that these wonderful well meaning doctors don’t know enough about FA to know that isn’t the case for her. I asked her what scared her so bad about the surgery. All this time I had thought it was the pain of it, the recovery time and everything that goes along with it but that wasn’t her first response. As tears started forming in her eyes she said “momma I’m afraid something is going to happen and I won’t wake up”. My heart just sank in my chest. I didn’t realize that my biggest fear was also her biggest fear. I had never talked about the dangers of the surgery. How did she have this automatic fear in her?? People go through surgery’s every single day and come out just fine! Why would she think such a thing?? Well, she does have wisdom well beyond her 13 years.

Here is where the Lord brings back to my mind that we have to be ready FOR SUCH A TIME AS THIS. By this time we are both in tears as I explain to her that I firmly believe that if God has surgery as part of the road He has laid out for her than I believe He will walk us through it. I explain to her that all we want with our lives is to bring Honor and Glory to HIM. And while it is COMPLETELY ok to be scared and would rather that this cup pass from us we have to have faith that HE will see us through. YES, it will be hard and YES it will be a long road but you NATALIE are strong!!  So, after we discussed that she also told me how hard it would be and that she wouldn’t get to see her friends because she would be in the hospital FOREVER (that’s the teenager over dramatization lol) I assured her that her friends would be right there with her.

The thought of this surgery has been scary for me because I know that her recovery is all up to HER. No one else. It will be up to her to do the therapy and work as hard as she can to push through the pain and get her body working again. I can’t do it for her, her daddy can’t do it for her, even her most favorite Physical Therapist in the world can do it for her. She would have to do the work to recover to what she is now. I told her that for a while her physical therapist, who by the way is more that just a PT to us, would probably come to the house for a couple of weeks to do therapy and then we would go to the rehab. I think she was a little more at ease but is of course still a bit fearful. Wouldn’t anyone be?!?! We have started chiropractic care and he is doing decompression treatment on her 3 times a week. We will do everything we can to avoid the surgery but if it is in our future we want to be ready.

We don’t know anything for sure yet. We go back to the ortho doctor on January 18th and we will know more then. We are praying for wisdom and direction and to know the things that I just have to let go and lay at Jesus feet, as my sweet friend reminded me.

Natalie is blogging about her journey. If you haven’t read it you need to. She is so funny. WWW.LeapOfFaith123@wordpress.com 

 Thank you to all of our wonderful friends who continue to walk this journey with us. I’m so blessed to have you all!

Wheelchair in my rearview mirror….

I get so tired of looking at the wheelchair in my rearview mirror. It is a constant reminder of my sweet daughter’s future. Especially when she has weeks like she has had this week. She has fallen so many times this week! It’s like all of a sudden she is headed down hill. We are hoping that it’s just a little virus or something that she can recover from. But that stinking chair stares at my in my rearview mirror!

We have to take it just in case she needs it when we are out somewhere. She can’t make it on long distances. She just wears out to easily. A couple of weeks ago we went to a new Aquarium at Grapevine Mills mall. She told me she wanted to use it and I found myself wanting to discourage her from it!! I of course didn’t but I wanted too just say try it without it! I want to push her just enough but not to much! I live feeling the fear of her having a bad fall and breaking something. A leg, a wrist, an arm. That is such a fear that is so real in my life!! I want her to live her life to the fullest and as exciting as it can possibly be but I also want her to be careful.

A couple of weeks ago we went to the ortho to get her feet looked at. The dr told me he had another dr friend whose daughter had FA. He had just treated her for a broken wrist! And he gave me that “look”. Like yeah….it’s not good!

 Natalie is a beautiful gift from God who teaches me so much everyday. I’m so thankful for His goodness and for being SO real in her life. I’m so thankful that she knows He is in control and has faith in Him that teaches this old momma to remember to trust!

Since she had been sick this week we brought the chair in and she has been using it around the house. Uggg…..It’s one of those things were your just not sure that cure will get here quick enough. I mean everything looks promising but I keep seeing things that say they have been promising for a long TIME. Please don’t get me wrong! I know she is in HIS hands and everything will happen in HIS time. It’s just hard sometimes to not know. I mean no one knows the future right?? But with a progressive disease it’s so hard sometimes to see progressions taking place and not think the worse.

Her head bobs sometimes like she has Parkinson’s or something like that. And can you imagine not being able to put toothpaste on your toothbrush without having to set your toothbrush on the counter and using 2 hands to put your toothpaste on?!?! It’s the simple things in life!! Or having to constantly clean up after someone because of the spills they make because they can’t control their hand movements?!?! To not be able to even think about pouring out boiling water into a tea-pot to make hot tea? That’s hard for a little girl who LOVES hot tea! And to NOT bow your head and close your eyes to pray because you might fall if your standing or get dizzy if you’re sitting?!

I want my daughter’s hands and legs to continue working. If that’s not God’s will for her life we will accept it and deal with it as it comes. We will proclaim His name and be thankful for every day we have together. Thank you for letting me vent and not thinking any less of me because of it.

For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

I’m not understanding these tears…..

Today is the one year anniversary of Natalie’s diagnosis of FA. I don’t know why I’m struggling so badly! I know God is in control and she is doing SO good right now! I’ve come so far with you Lord please hold onto me today. I don’t understand why the tears won’t stop.

Natalie thinks I’m just having “one of those days” where she doesn’t ask any questions. She’s an amazing young lady. I’m so blessed to have her.

I’m reminded that God knew how many days she was to live on this earth and that number didn’t change with her diagnosis. None of us really know how long we will live so why is it so hard to know that your child isn’t expected to live to an old age?

Ok, Lord I’m just needing a little extra strength in my weakness today. You know I love you and I trust. And boy does she LOVE and TRUST you.

She wouldn’t change a thing…..

Wow!! What a day. Today was a good day! I was able to spend the afternoon with a long time friend and my family and we had a good time together. My sweet friend’s were going to the movies and called and invited us to go but I was busy so Natalie went along with her friends to see Soul Surfer. We have been wanting to see it so badly! It’s about a young girl of faith who was attacked by a shark and lost her arm.

When Natalie got back home I asked her about the movie. She just kept saying “it was so good, it was so good!” Then she said with tears filling her eyes, “there was this one part at the end. They interviewed her and asked her if she could go back and change going  surfing that day and she said No, because then I wouldn’t have touched so many people and inspired them.” By this point we are both IN TEARS!! Then she said “that got me to thinking about me and FA and I wouldn’t change anything either because if I did I wouldn’t have met my hero Kyle and all of my other friends with FA.”

Yes, she is wise beyond her years. But she also knows God has a plan and a purpose for her life. Today being May 1st, this week a year ago we found out she had Friedreich’s Ataxia and she has suffered so much but today she says she wouldn’t change a thing!! She’s AMAZING!!! Thank you God for preparing her heart. And thank you for teaching me so many lessons through her.

You can see her blog here:  http://leapoffaith123.wordpress.com/   Feel free to leave a comment for her and encourage her in this journey.

The first day I heard the words Friedreich’s Ataxia.

My sweet husband has always said that I remember every date for everything that has ever happened to me. Whether good or bad. Well, there is a date coming up that has been on my heart for a few days. The day one year ago that changed our families lives forever. The first day I heard the words Friedreich’s Ataxia.

 The only place I know is with the Lord. Without Him the last year would have been totally and completely unable to handle. I would love to be able to sit here and tell you that from the beginning of this journey of an incurable life shortening disease that I have had complete faith that God knew what He was doing and my faith in Him has never wavered. Unfortunately, I can’t say that. In the beginning I spent many days wondering why He would choose such a sweet girl who loved Him so much to have to face such a future. I spent many dark days wondering where God was. Did He fall asleep on me? I knew the truth in my heart but it wasn’t getting to my head! Horrible dark thoughts plagued me. 

I have so many good friends that were there for me everyday and that were praying for me. But I had a few VERY good friends who were there during the absolute darkest days. Speaking truth into my life about God’s love and that He only wanted the best for us but that best might be tough.

 Contrary to what some might think God didn’t put me through this trial to make sure I was faithful. I mean, He’s God! He knew how I would respond but He needed me to know that I had some refining fire to go through. This fire has been HOT! Let me tell you.

One day while searching to hear God’s voice and feel His presence I came across a book. I knew what the author of this book had been through and I thought it would probably be a good read for me. It was called Choosing To See by Mary Beth Chapman. If you haven’t read it YOU SHOULD! It is a wonderful book and I related to her so much! Our lives seemed to be so much alike I felt like I could have written it! Not the same circumstances but I was just so able to relate to her in a very real way.

 In this book she told a story about how after the death of her daughter, who was ran over by her son in a car, she was in such disbelief but she found this picture her daughter had made. And on the back of this picture was the word SEE. Now, you would have to read the book to get all the wonderful details but the point was she realized she had to CHOOSE to see God in everything and not let her own thoughts plague her with disbelief. That day I decided I had to do the very same thing. I had to keep my thoughts set upon the Lord, knowing that He was in control. I want my life to bring Him glory and honor and I have to choose everyday to do keep my eyes fixed on HIM.

Let me back up and take you through the first few days and months of May. On May 1, 2010 we were getting all set for a family reunion. We knew Natalie had Hypotrophic Cardiomyopathy (heart disease) and she woke on that Saturday morning saying she wasn’t feeling well and her heart was hurting. Of course we got her right to the hospital and her cardiac enzymes were elevated, meaning a possible heart attack so they transferred her to Children’s Hospital in Dallas. They didn’t find anything wrong with her so they sent her home the next day.

On Tuesday she was still running a fever and she was falling down. Natalie had always been a little clumsy but this was different. She couldn’t get up from sitting without stumbling and falling down. So, I loaded her back up into the car and took her back to Children’s. They ran a few tests, did x-rays, told us she had Scoliosis and did a spinal tap to see if she had meningitis and then admitted her.

The Scolisis didn’t seem to be a big deal to them at the time. They told us to follow-up with her pediatrician when we got out of the hospital. They could see that Natalie was quite unstable and searched a little further. When the Neurologist came in he told us they would be looking of different things. They did a MRI, cat scan and found nothing so they decided on Thursday to do a brain-nerve connectivity test. Up to this point I didn’t know what they were looking for. I am pretty sure John did because he had been googling stuff and didn’t tell me what he was looking at. He just told me to wait and not look. During this test, that was ABSOLUTE TORTURE to Natalie, they found that she had no connection between her brain and nerves.

The doctor took us out of the room and said he wanted to turn the machine up just a bit more to make for sure. Looking back now I regret letting him because I now know she didn’t have to endure such a test but it was at that moment that I heard the words “do you know they are looking for Friedreich’s Ataxia in your daughter”? My husband shook his head yes but I was clueless. Still, there was nothing.

When we walked out of the testing room I’m sure we must have looked like we had just seen a ghost. My mother met us there in the hall and she instantly knew something was wrong. When we went back to the room I was a wreck but I kept it well hidden from Natalie. I still didn’t know what Friedreich’s Ataxia meant but I knew it had to be bad.

The neurologist came in to explain a few things about doing a genetic test because it looked like they were right. He then told us that the Scoliosis and heart condition and Natalie’s clumsiness was all because of this disease. I remember him not wanting to be completely honest with me about what it meant. I kept asking him but he said they would know for sure until the results came back and they could see the genetic code numbers. Natalie and my mom were out walking the halls during this conversation with the doctor. When he left I did something my husband told me not to do which was google Friedreich’s Ataxia. I remember feeling like I couldn’t breathe. I tried hard but it’s was like a good breath wouldn’t come. How in the world could I accept that my daughter had a “life-shortening disease”. What did that even mean?!?!? Was she about to die?!?!? I just couldn’t breathe.

That night I remember about 50 or more of our dearest friends and family coming to the hospital just to be with us. Natalie still had no clue about what was going on. She was just having fun with her friends at the hospital. At this point all I wanted to do was leave. It was Mother’s Day weekend and Natalie felt so bad about being in the hospital on Mother’s Day. We told him that we wanted to leave ASAP since they couldn’t do anything.

John and I were in separate cars and I remember how thankful I was that we were. He and Natalie could drive home together and I could get in my car and scream at the top of my lungs. And that was exactly what I did. The first minute that I had alone and I just lost it. My baby girl who was so full of love and joy was going to die! How in the world does a momma handle that??? I didn’t know and I didn’t know anyone who would be able to tell me either.

I remember coming into the house and 2 of my dear friends were here finishing up cleaning my house and buying some groceries so we didn’t have any of that to worry about. I remember my dear friend hugging me and I just lost it. I pictured Natalie’s wedding day and all the hopes that I had for that day being gone! And I remember screaming at my friend WHY?? Tell me WHY!! They just sat and held me like good friends would. I could only have a meltdown for a minute because John and Nat would be pulling in any minute.

So, I threw my happy face and fake smile on so she wouldn’t know anything was wrong. At this point we hadn’t told her anything and didn’t know if we were going to. I remember just wanting to run away and be able to scream and cry for days and I would feel better. The next morning we took Natalie to breakfast and told her. It didn’t really faze her a bit! She just wanted to go play with Naya.

 I remember telling God, Lord please just let me get through the next 6 months and I will be telling everyone how much I’ve learned through all of this. Well, that 6 months came and went very quickly and I was still a mess. We thought in the beginning that we needed to just stick Natalie in a wheelchair because that was what the doctors had said was going to happen very soon so why fight it. Right?!? Well, I gues you can say I finally went through all the stages of grieving and I was in FIGHT mode.

We started Natalie in Physical Therapy with one of my friend’s husband. The difference that he soon brought out in Natalie was AMAZING! She was getting stronger and learning to teach and tell her body to focus on what she wanted to do. IT WORKED! We couldn’t believe the changes we were seeing in her! It was wonderful!! Then December came….not a good month!

Naomi, our 8 year old very athletic and talented daughter, ended up in the hospital with a very RARE (here we go again) infection in the bone of her leg! Yes, really!! At first they told us they were going to have to operate because if it burst that would be really bad. They also told us that the infection was on the main muscle that runs down her leg. This was the last thing I wanted to hear! They said if they did operate they could possibly damage that nerve and she would have a deformed foot. SERIOUSLY?? How could you be telling me this!!!

Thankfully after all the doctors consulted with each other they decided to try antibiotics and try to get the infection that way. IT WORKED! She responded wonderfully to the antibiotics and we were in the hospital for a week and then went home on antibiotics for a month. But it was December.

Then flu season came around……ugggg!

Four of my children got the flu and Natalie was one of them. The flu is SO hard on kids with FA. It can put them down for weeks at a time. She was so weak and we missed several PT sessions. It was a hard month. By the time we all got through the flu it was almost December 31. I was so ready for the year to be over! The worst year ever! Only, it wasn’t over yet.

At around 11:00 on New Year’s Eve I got a call from my aunt about my Meme. The most wonderful woman in the entire world was sick and the ambulance was on its way. We jumped in the car and headed down there. I had to spend the last few minutes of 2010 saying goodbye to the most precious woman in the world. I asked God to please please give us a break! I couldn’t handle anymore! That next day was the first day I have ever thought If I could only die everything would be ok for everyone around me. I was causing heartache and everyone around me was having to suffer for it. Just take me God so no one else has to hurt!! I know that it was a crazy thought put there by the devil himself but it’s honestly the way I felt.

The following week after Meme passed we had her funeral on Tuesday and we were supposed to leave on Friday for Natalie’s Make a Wish trip to Hawaii. It was all just so much. We were ready for sandy beaches and to just sit and watch the sun rise and set. We had a WONDERFUL time while we were there. But Natalie wasn’t recovered from the flu and everything else that had gone on. She spent most of the time in her wheelchair and she fell down so many times while were there. She even told me while we were in Hawaii that she thought she was about to lose her legs. They just weren’t working anymore. I about died at that very moment! I told her to put that out of her mind! She just needed some PT and she had been through so much but she would be fine!

Hawaii was BEAUTIFUL and everything we could have imagined. Since January God has shown me so much. I know He is with me all the time! And I am choosing to see Him in everything. One day I realized that I used to tell God that my day was His to use it how He willed but I hadn’t done that in quite a while. That was the day I started again! Giving my day to Him and knowing that whatever happened in that day was by His design and I could handle it by His grace alone. I always knew this but I needed to remind myself of it.

Well, here it is one year later. Natalie is stronger than EVER and I plan to help keep her that way for as long as possible. We aren’t ignorant to the future but we know that only God knows the plans and purposes He has for her and our family and we just have to trust him. We want to bring HIM honor and glory and we will trust Him to get us through. NO, it hasn’t been easy and I have been in some really bad places in the past year but I’m so thankful that He didn’t give up on me and that my nearest and dearest friends didn’t give up on me either. You know who you and I thank God for you all!!! I WOULD NOT be where I am today without the love and support you have given me. Thank you for never telling me to “get over it” or “move on already”.  You are true friends indeed. Thank you for letting God do the work in me that He needed to do in me and you never left my side.

I’m thankful for every step of this journey. The good the bad the ugly and the AMAZING….

My first ever blog post….

Well, I have been wanting to do this for some time now and I just finally bit the bullet and did it. 🙂  I have so much going through my mind and heart and need somewhere to let it out sometimes. I have wonderful friends who don’t mind listening to me whine and cry but sometimes I just hate being the downer of the bunch. This way only people who actually want to listen can look and see!

I really don’t know where to begin. I have a wonderful husband John who works so hard to provide for our family. He’s the best! I have 5 beautiful kids ranging in age from 14-4. Last May we found out that our oldest daughter Natalie had a very rare disease and life has been so much different since then.

I wanted to name this blog “instead of a death sentence it was a LIFE sentence” but I couldn’t make it work. lol  When they told us about Natalie it sure seemed like all was lost. However, instead of laying down and dieing….and trust me I wanted to…My husband insisted I get out of bed and we make some memories that last a lifetime. However long that lifetime might be. He is a really smart man. 🙂  We try to L-I-V-E everyday as full as we can.

OK….so, I don’t really know where to go from here so I’ll end for now and be back when I have something more to add. Good night blog! 🙂