Words Aren’t Necessary

I live with a three-year-old who can say three words. She loves telling people “bye-bye.” And she can answer yes and no questions with a “yeah” or a “nah.” But as far as her vocabulary that’s about all she has. I talk a lot to her during the day. And she ‘talks’ in her own way. Well right now she’s in her screaming phase where she literally screams everything. And telling her to be quiet only makes her louder, so that’s fun. She has a clear “ah” scream and she loves making the “o” noise. See her in the picture below. In the photo shoot she wouldn’t stop saying “o” so we just rolled with it. It’s a new sound, and new sounds are so much fun!

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Even though Abigail cannot communicate in words she is very expressive! I tell people a lot that even though she is not able to communicate verbally, she can definitely communicate in her own way. Her nonverbal communication is on point! Yes, she knows a little bit of sign language but that’s still new too. And of course, she can’t do a lot of signs correctly because her little fingers don’t have the coordination they need to do true ASL signs. But Abigail does not have a poker face. What she thinks and feels shows up in those big blue eyes and little lips. Most of the time she is joyful – a smile spread across her face or a laugh to brighten everyone’s day. But when she is tired her poor eyes get red and blue shadows appear under her eyes. When she is sad or hurt her bottom lip puckers out. It is about the cutest thing ever, but she just looks so pathetic. When she is frustrated or impatient she will holler at you to hurry up. When she is scared she reaches up to cling to your neck and she gets a death grip on you. By looking at her face you can see what she is feeling, or if she likes something or not.

As always, Abigail is my normal. I’m used to toddlers not talking. I’m used to wondering what she is thinking or what she wants to play with or even what she wants to eat. Thankfully Abigail is easy-going and not too picky so she is pretty easy to please. We are trying to teach her how to make decisions by choosing between two different options. Making a choice isn’t her strongest point since her whole life other people have done everything for her. So when people ask me how do I know what she needs or what she wants, my best answer is that I have spent every day for the past three years with this girl and I know her better than anyone. I know how to get her to eat and drink when she pushes things away. I know how to distract her before she gets too angry. I know how she works best and what she likes and doesn’t like. Even though she cannot speak, I feel like I know what she needs. Her smile on her face all the time shows me that she seems to be okay with our system.

I do hope she continues to grow in her vocabulary and one day can speak and choose and be more independent. It would be wonderful to hear her little voice, and hear what she is thinking. To hear her say “mama” or to have her ask me a million questions. As she gets older communication will become harder and much more needed. I never know if she is sick or if something hurts. I will never know if she had a good day at school or what happened that day. I will never know her favorite color or what she wants to play with.

But a friend once commented that maybe Abigail is teaching us that words aren’t necessary to express love. I love that! So often I talk too much, and I’m not even a big talker. I’m a very quiet person and I would much rather be by myself or with a couple of people than a crowd of people any day. But we often use unnecessary words to fill holes and gaps. But precious Abigail doesn’t have words to use, and she fills a room with her presence instantly. People are drawn to her. Strangers are always coming to speak to us while we are out and about. When I am crying over something silly on a television show, Abigail will come right over and crawl into my lap to give me a hug. Those precious hugs make me laugh every time. Abigail hugs hold so much love in them! They are my favorite things!! So often we confuse love with a feeling. But love is so much deeper than what you can feel. I love a little girl who cannot even talk to me for no other reason than because she is mine. She has never said “I love you.” She has never given me a gift. She has never done anything for me. But she expresses her love with hugs, with smiles, and with that quiet, strong connection we share. A connection I could never begin to explain, but it is present and it connects me to my daughter in a very strong way.

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One of my most favorite pictures of us!

I am thankful words aren’t necessary. I am thankful Abigail is teaching me how to listen with more than my ears. She has made me better because of it. I notice so much more because of her. I have learned love is more than words and feelings. And while I can’t wait for Abigail’s next words, I am also ready to grow in our connection and keep learning to communicate with her in our own way. I want to learn all I can about her and what she needs. We are entering into new waters as she continues to grow and mature. It is scary and exciting all in one. She is quickly entering sassy toddlerhood. There will be things that will have to change and so much learning as this new chapter begins. But I know we have made it this far and together we will figure this out too. Because while words aren’t always necessary, community and partnership are very, very necessary! And I have the best little partner in crime any girl could ask for!!!

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We aren’t super, but we make a SUPER team!!!

 

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Now What?

A lot of special needs families get one big punch as they hear the diagnosis from a doctor that their child has special needs. Whether it’s in utero or when the child is four years old it is painful. No one wants to hear that their child is ‘messed up.’ No one plans to have a special needs child. Honestly, most people don’t even consider it a possibility. So when that diagnosis comes, when the news is heard, it is often not taken well. They wonder ‘what now?’. What do we do now? How do we do life with a child with so many needs? How do I live with crushed dreams or all this guilt? But I would dare to say life isn’t over with a diagnosis. Yes, life looks different, but there are amazing blessings in store!

But our story is a little different. We didn’t have one of those end all moments. Our news came in slow, sporadic moments at doctors’ offices. It started when Abigail was two months old with her vision. The pictures below are some of my favorites from when she was itty bitty. You can see how her eyes always looked up. That’s where our journey started. Today she is three and we still don’t know a whole lot more than we did then. But her eyes are slowly fixing themselves, and that’s a huge praise! Abigail’s diagnosis as of right now is severe developmental delay. It’s a blanket diagnosis until they can give us a real one. I can tell you a lot of things Abigail doesn’t have, but as to an official diagnosis we have nothing.

 

We were never told that Abigail had special needs. It just happened. It is like a mist that slowly crept up on us. We saw it slowly coming in the distance, and soon we were in it. It didn’t knock us over like a tidal wave. It wasn’t unexpected like a tornado. It simply came – slowly but surely. It took awhile for me to be able to say those words. My child has special needs. I think the first time I said it was in my first blog I wrote almost two years ago. It is painful, but more than that it is unknown. People do not like the unknown. I have had a lot of questions about what is wrong with Abigail or will Abigail ever talk or walk. I have no answers to these questions. We do not know what is causing Abigail to be the way she is. We do not know what her future holds. And that unknown factor makes it so hard to be able to talk about her and her special needs.

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Abigail is a huge question mark. She could be completely normal in five years, or she could live with us when she is forty because she cannot sustain herself. She might never walk or talk, or even sit by herself. Or she could be an Olympic gymnast with an amazing story. We have no idea. We have no idea if it’s genetic or what has caused her to be the way she is. We know she isn’t a normal three-year old. We know she is improving at a snail’s pace. We know that she has special needs and needs a little extra attention. We know she is precious and wonderful and wants to do so many things! We know she brings blessings to our life everyday, and we are so thankful for her.

We have been so blessed on our journey. A lot of families hear the diagnosis and then ask “now what?” We never had to do that. Every time we had to take another step, find a new doctor, a new therapist, or start more paperwork someone was there to guide us. Our pediatrician was the first to help. Looking back I will be forever in debt for their quickness in spotting Abigail’s delays. Without them Abigail would not have received the early intervention that she did and she would be even further behind. We were clueless anything was wrong with her. Her pediatrician led us to start therapy at five months old. They got me connected to the right doctors. And then those doctors and therapists led us to where we are today. I have met fellow special needs moms that have been there and done all this, so they have helped given me advice and contacts to call to answer any and all my questions. We were never alone in this! For each new step someone helped us over the hump. I think that’s what has made this whole process easier on me. I have never felt helpless. I know I am giving Abigail the best care I can. I feel good about where we are and where we are going.

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Our baby girl was cute from the start, but I am so thankful for those who caught her issues early. I was so blind to her needs, but they saw them and helped us in ways I might never know fully!

Yes, our daughter has special needs. But we never had to ask the what now question. We never lost hope in her. We simply take one day at a time. If I start thinking too far in the future it gets overwhelming. But day by day Abigail is improving. She is always trying something new and amazing us all. It doesn’t feel as awkward to say that Abigail has special needs anymore. Her needs don’t define her. Even a diagnosis wouldn’t define her. She has the ability to raise above a diagnosis or a prognosis. So now what? What do we do moving forward. We keep teaching her. We keep helping her strengthen her muscles. We keep loving her. And we keep watching her soar! Abigail’s future is bright, and I am so thankful for our journey and cannot wait to see what tomorrow holds.

 

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Learning to color while in her stander. She has come so far, and I will share more about that in my next blog!

100th Post Celebration

Congratulations! You, my friend, are reading my 100th post. I began this blog two years ago just to share our story. Not a lot of people even knew we were going through anything with Abigail. We didn’t know much, but I thought it was time to share our small simple story. As more and more people gave me positive feedback I began to write more. Today, this blog is full of stories and updates and encouragement from my little girl. I went from writing maybe every other month to writing almost twice a week. I’ve learned a little. I’ve grown a lot. And I hope I encouraged someone out there.

I have great dreams for this blog. I hope to one day expand it into something bigger. Maybe my own company of sorts. I want to brand it, and help others who are going through the unknown. I want to share our story and let others know they are not alone. I hope to one day make this blog my job. I have a lot of work to do and even more learning, but I am excited where such a tiny idea will lead me.

I called this blog “Treasured Encounters” because so often the encounters I have with Abigail do feel like small tiny treasures I like to store in my ever-widening heart. I want to hide all these tiny, sweet moments and ponder them. I want to treasure every encounter! Of course, the name might change. The direction may lead to a wider audience. The appearance may enhance. But this tiny little blog has meant so much to me! In these short two years it has seen over 3,500 people! I have thirty followers who don’t even know me!! And I can’t wait to see where this blog goes next!

So in my 100th blog post I simply want to say thank you to my amazing followers, my friends and my family – you people! Without you this blog would have never happened. Without your kind words, your Facebook likes, your amazing feedback I would have never continued. I might not comment on every note, but I read everything and it all means so much to me. Now I am dreaming of more. I want bigger and better. So I am asking you tonight. What do you want to see more of? What do you love about this blog? What do you want to know? Any questions for me about Abigail? About having a special needs child? About starting a blog? How would you like to see this blog grow? Is there anything I need to change, improve, add? Please, drop your comments and suggestions or even questions below or message me or Facebook me. Let’s connect! I want to hear from the people who read these every week. And to say thank you for being so amazing I want to give away a very tiny prize. Trust me. I wish I could buy you all a car, but since I can’t do that I am giving away a cute T-shirt to a lucky winner.


I found this company on Etsy, and fell in love instantly. The shirt reads “Choose Joy”. It perfectly describes Abigail. She chooses joy every day, and helps me find joy in the small moments too. I love my joyful little girl, and I know so many of you do too. So one lucky winner will receive a free T-shirt to help spread our joy! For a chance to win all you have to do is leave me a comment here or on Facebook about how I can improve this blog. Again, read suggestions above if you’re drawing a blank. Everyone who leaves a comment will be entered into the random drawing. I’ll announce the winner June 18th! So please leave some love and some advice. Who knows you may be getting that awesome shirt in the mail soon!! I truly wish I could thank each of you personally, and send everyone a shirt. But stay tuned because this blog has big things in store (hopefully). Thank you so much again and good luck!

My Small Life

It’s funny how life works out isn’t it? I love planning. I plan everything months in advance and make two thousand lists of everything you can think of. Of course, I had my life planned out in 6th grade. I planned to graduate high school, go to Berry College, and get a degree in education. Then I was going to teach for a few years as I worked on my Masters of Library Sciences from UGA. I would eventually achieve my greatest dream of becoming an elementary school librarian – my dream since second grade. I can’t make this stuff up. As you see I had no aspirations of a husband or kids. Just a dream job so I thought.

Now I am married, have a kid and a degree in Christian Studies from Truett-McConnell. None of my plans came about. None. Zip. Zero. My senior year God steered me to Truett instead of Berry. Then my freshman year, He called me away from my dreams. He called me to fully trust Him. He directed me to the degree I received, and toward a blonde headed man I also married. You’ll be glad to know I have no idea what my future holds. At this point I simply have to hope God has a plan, because I weirdly don’t. I plan all the daily details, but I don’t know what five years down the road holds anymore.

Today, I lead a small life. Kathleen Kelly in You’ve Got Mail wrote this in an email, “Sometimes I wonder about my life. I lead a small life – well, valuable, but small.” I’ve always loved that quote. That’s me- a small, but valuable life. I don’t see a lot of people most days. I spend all my time with a three year old who doesn’t talk. I do a lot of talking to myself – well I’m talking to Abigail, but really to myself. I’ve gotten a lot of stares in the grocery store, but that’s okay. That’s how she will learn how to talk is by hearing words, right??

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I’m just a small town girl. A stay at home mom. A wife. A servant of God who tries to be faithful. A friend to a few. A daughter and granddaughter. Such a simple life. Some would probably say it is boring. Some would say it is pointless. Sometimes it seems useless. Sometimes I feel awful for not helping Jordan provide an income for our family. Yes, it is small. Yes, it is often not rewarding. Yes, it often goes unnoticed. Yes, it is lonely. Yes, it seems like I could be doing more. But I am thankful for my small life. The small little moments I get to have with my daughter every day. And I couldn’t even begin to express my thanks for my husband. He works hard to support us. He misses out on so much, and has made so many sacrifices just to keep working for us. He lets me pursue my dreams, and tells me to do whatever I want to do whether it’s blogging or writing a book or making crafts. He supports all my crazy dreams and he encourages me daily! He keeps me grounded when I get emotional, and helps me sort through all my millions of plans.

I never planned for my life to be like this. I honestly don’t know what the future holds. But I like my small life. I have dreams and plans, and I pray they are fulfilled. But these plans aren’t about what my future job is or making lots of money (well I never dreamed about that anyways). My dreams are more realistic now. Little seeds of hope God is planting in my hungry heart. My plans include family, and helping others. That’s my prayer now – that this small, simple life I lead will impact those around me. That I can be a servant to everyone I meet, and that our story will help someone else’s. Yes, my life is small, but it is a very blessed life that I wouldn’t trade for anything!

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I love this small life and my family!

Bittersweet Parenting

I was sitting in church Sunday singing a good ol’ gospel hymn about heaven. One of those talking about getting up and walking around heaven. I love good old-fashioned hymns, but this one brought tears to my eyes. All I could think about was my little girl not being able to walk. I know it is silly to cry about something that may or may not happen, but in that moment I just felt an overwhelming sadness that she was missing out on so much.

Abigail just turned three. She has never sat up by herself to play with her toys. She has never felt grass beneath her bare feet as she runs through a sprinkler. She has never tripped and fallen over her toys spread throughout the house. She is forced to go wherever people take her. She is at the mercy of whomever she is with. She has no control over when she stands or when she sits. It is all dictated by others.

Of course she knows no difference. She has no idea she is missing out on a whole world of independent living. She is happy as a clam being able to army crawl around the house and letting us do everything else. She has no idea how small her world is. How limited she is, and how dependent she is on others. In her world she can do anything and everything, and she tries her hardest to make that a reality.

Abigail will get her wheelchair tomorrow. It is hot pink, and we are hoping she will be able to one day (a long time down the road) be able to crawl into it herself and push her own chair. Again, we are a long way from that, but that’s our end goal. I have been excited about this chair for a while now. I am excited she will have a way to get around, and I pray she can push herself in it easily. This chair will bring us some freedom. But it is a little bittersweet. Who wants their child to be confined to a chair? Of course, Abigail is an odd situation where she won’t be in the chair a lot. She does have the potential to walk and crawl, so that’s our end goal and all her teachers and therapists will be working to get her out of the chair and walking on her own. But the chair means she isn’t quite there yet. The chair will bring stares from strangers. The chair will bring pity. The chair will define her as different. Right now strangers don’t have any idea how far behind Abigail is. To them she is just a cute toddler in pink glasses in the grocery store shopping cart. She can get by with her cuteness. But put that same cutie in a hot pink wheel chair and you then invite questions of ‘what is wrong with her?’ ‘She looks normal, but why is she in that chair?’ So we are about to open a can of worms when we take her out and about now. I don’t know if I am ready for all the stares and questions. How do I explain Abigail? I don’t even know what’s going on with her.

All these thoughts have been running in my head these last few days. I know we will make it through. Soon the stares and the questions won’t even phase me. I know I’ll be able to answer people the right way when (and if) the time comes. My prayer is that I always honor my Lord and give my child encouragement in all my responses. I want people to see children who are a little different and know the right things to say. Maybe I can be the educational instrument to guide people’s questions in the right direction when it comes to special needs children. So many people don’t know how to talk to a special needs family. They don’t know how to ask their questions simply because they have never walked in their shoes.

If you ever wonder how it feels to have a special needs child I would tell you it is one of the most rewarding but hardest things you will ever go through. It is draining. It is hard work. It is frustrating. It is lonely. It is disappointing. It is demanding. But it is also rewarding. It teaches you so much about yourself and about that sweet child you are raising. It bonds you and your child like nothing ever could. It teaches you about sacrifice and selflessness. It opens a door to a community you never knew existed. I once read a book that gave a good picture of what I’m taking about. This is an excerpt from Andrew and Rachel Wilson’s book, The Life We Never Expected.

“Discovering your children have special needs is like being given an orange.

You’re sitting with a group of friends in a restaurant. You’ve just finished a decent main course, and are about to consider the dessert menu when one of your friends gets up, taps their glass with a spoon, and announces that they have bought desserts for everyone as a gift. They disappear around the corner, and return a minute later with an armful of spherical objects about the size of tennis balls, beautifully wrapped, with a bow on each one.

As they begin distributing the mysterious desserts, everyone starts to open them in excitement, and one by one the group discovers that they have each been given a Chocolate Orange. Twenty segments of rich, smooth, lightly flavoured milk chocolate: a perfect conclusion to a fine meal, and a very sociable way of topping off an enjoyable evening. You begin to unwrap the object in front of you.

But you’ve been given an orange. Not a chocolate orange; an actual orange. Eleven erratically sized, pith-covered segments with surprisingly large pips in annoying places; requiring a degree in engineering in order to be peeled properly. You stare at it with a mixture of surprise, disappointment and confusion. The rest of the table hasn’t noticed. They’re too busy enjoying their chocolate.

You pause to reflect. There’s nothing wrong with oranges, you say to yourself. They are sharp, sweet, refreshing and zesty. Looked at from a number of perspectives – medical, dietary, environmental – you have been given a better dessert than everyone else. And you didn’t have a right to be given anything anyway.

But your heart sinks, all the same. An orange was not what you expected; as soon as you saw everyone else opening their chocolate, you simply assumed that is what you would get, too. Not only that, but this wasn’t what you wanted. And because you’re surrounded by other people, you have to come to terms with the   sheer unfairness of being given your orange, while your friends share, laugh about and celebrate theirs. A nice meal has taken an unexpected turn, and you suddenly feel isolated, disappointed and frustrated.  

Discovering that your kids have special needs is like that.”

Yes, that’s my Abigail. She is no chocolate orange, but I love her all the same. She is juicy and messy and very good for me. Honestly, I would choose to have another orange at this point. Oranges are my normal now and I wouldn’t even know what to do with a special treat like a chocolate orange. So even though it’s a little more work and a little more messy I am thankful for my real orange. She brings such joy and flavor to our life! I am excited to start a new adventure in a pretty pink wheelchair. And I invite any questions from you or from onlookers. Please, never be afraid to encourage a special needs parent you see out and about. The very fact that they came out with their child is a big deal. Just let them know they are amazing parents. Every parent needs encouragement and we are parents too. I mean this life is bittersweet, so I encourage you to add some sweetness to a life today!

My Three-year-old

Three years ago I was a nervous wreck. I was going in the for my scheduled induction. I was happy as a clam that there was no guess work about when Abigail may or may not come. But I had also no idea how inductions worked, so I googled them the night before. Bad plan. I think I read about 10 horror stories before bursting into tears in total fear. Jordan had to steal my phone from me and make me go to bed. Needless to say I didn’t get much sleep that night.

Abigail’s delivery was a lot like her actually. Steady but slow. The room was never chaotic. It was actually quite a boring process looking back. Then the moment came for her to enter the world. I was one push from having a c-section. The song from The LEGO Movie came on, “Everything is Awesome.” I made my own play list and it really is a fun, upbeat song and I love cheesy. I honestly wasn’t listening to anything at this point, but Jordan said that’s what was playing. It was an appropriate song for Abigail. And she entered the world with one tiny wail, and then she was here. All seven pounds of her tiny little self. The only thing I remember was those big blue eyes looking around intently. It’s funny because Abigail’s vision is what started our whole journey into he special needs world, but at that moment her eyes were perfect!

 

That day was three years ago now! May 8, 2015 at 6:19 PM this girl made her appearance. It’s been three years of having this girl in my life, and I had no idea I even needed her. I didn’t want to be a mom. I still struggle with that calling from day to day. I never dreamed of having babies. But God knew I needed this little girl. He made her perfectly, and blessed us to care for her. It’s been a crazy three years. We have moments of extreme joy and moments of great sadness. Abigail has changed me and my world. She has turned all my plans and dreams upside down. She continually challenges me and shows me my faults and failures. And I love her for it!

I love the way she randomly talks to you like she has so much on her little mind.

I love the way the wind blows her hair and she tries to get it out of her face.

I love the way she thinks she’s so independent and watching her figure things out.

I love that she loves to share and is so social.

I love it when she wraps her arms around my neck.

I love it when she gives her daddy love taps in the morning to wake him up.

I love watching her do new things and being amazed at her progress.

I love it that she loves books and wants to learn.

I love that she’s adorable and literally looks cute in everything.

I love being a girl mom, and staying home with my little one.

I love seeing the excitement in her face when she recognizes what you’re talking about.

I love that my baby is growing up. It breaks my heart, but I am thankful for the progress this year has held. A year ago Abigail couldn’t even move herself. She could barely roll over and had no mobility. She had no way of feeding herself, and she never really made any sounds. She had no preferences. Today she is like a new child. She is completely mobile by army crawling and is even taking steps. She is feeding herself and even learning how to use a fork. She ‘talks’ all the time, and is trying to form words. And that girl will tell you if she likes something or not. Her sassiness is coming out full swing! But that means she is developing normally!!!

Abigail is blasting through goals and expectations. Her therapists are always amazed at what she can do. She is moving mountains, and progressing so steadily. It’s amazing to be a part of her journey and see how far she has come. I made a little video on YouTube about her year this past year. On it, you can see how far she has come, and all the sweet memories from this year. It’s a little long, but if you’re interested in watching it here is the link.

Today starts our year of being three. This year has such great potential already. Maybe this will be the year of a diagnosis. Maybe Abigail will learn to swim in the pool this summer. Maybe she will take steps on her own. Maybe she will sit. Maybe she will form more words and put some together. But I know she will learn a lot. She will go to school. She will make new friends. She will achieve so much! I’m not sure what this year of three will bring, but I’m buckling up for this amazing ride!!!

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We had to start this year of three with some Icedream!

The Story of our Life

“Well you may be a little disappointed today.” Those were the doctor’s words today after I told her we were anxious to have some answers. We went to our Neurologist today to check in about all Abigail’s tests last month. We were hoping between the MRI, EMG and the muscle biopsy that we wound have an answer and a diagnosis. Well as the doctor said we were a little disappointed, but we definitely were not surprised.

When we had the EMG test done the doctor was positive that Abigail had a genetic muscle condition of some kind. Hence, why the muscle biopsy was ordered. However, the biopsy all came out clear. They found no evidence of any muscle condition like muscular dystrophy. That is a great thing! Another thing ruled out for Abigail. However, she will always have a scar on her arm from where we have tried to discover what is going on with her.

So now we are on to more tests and praying for some kind of answer for Abigail. It really is not for our sake. We do not need a diagnosis. We are getting Abigail the best help we can and are doing everything we can do. Even if she had a diagnosis it would not change a thing that we are doing. However, without a diagnosis you cannot get services and help you need. It will especially affect Abigail as she begins school. Without a diagnosis a lot of her therapies will be no longer available and services will not be offered. Everyone requires a diagnosis before you can receive what you need. It’s awful, but it is how the system works.

The next step in Abigail’s journey is more DNA testing. Now they are leaning toward her having a mitochondrial disease. This is a brief explanation from the United Mitochondrial Disease Foundation, “Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support organ function. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole organ systems begin to fail. The parts of the body, such as the heart, brain, muscles and lungs, requiring the greatest amounts of energy are the most affected.  Mitochondrial disease is difficult to diagnose, because it affects each individual differently. Symptoms can include seizures, strokes, severe developmental delays, inability to walk, talk, see, and digest food combined with a host of other complications.” This is as far as I have looked into it. I have learned not to research too much until we have an answer. If I researched everything they have guessed that Abigail had I would be a worried mess!

So here we are again with zero answers and a hazy direction to head. That’s the story of our life. Abigail has always been a puzzle. From the beginning the doctors had no idea what to do with her, so they have been blindly guessing what to do. Nothing much has changed. We know she has severe developmental delay. We know she has hypotonia (low muscle tone), nystagmus (shaking of the eyes), and now her MRI does show her cerebellum has atrophied a little from her last MRI when she was just 7 months old. It’s nothing too major since she is progressing, but it just gives the doctors another clue to follow in their long search of answers. But for now we will keep doing what we are doing, and prayfully Abigail continues to progress steadily. Progress is what we want! Regression has been a threat from the beginning (it always is in special needs children), but so far we haven’t seen any!! So keep praying the doctors have wisdom of what we should do. Pray these genetic tests maybe show something to help us. We go back in August for more answers (hopefully). And pray that Abigail continues to progress day after day. Living in the unknown has been our life and continues to be, but we have faith in our little girl. A diagnoses won’t define her. A doctor’s prognosis won’t hold her back. She is defying the odds and is a fighter. She is making this her story and I am just blessed to be able to share it!