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….