She Makes Me Laugh

If you have ever watched The Sound of Music then you’ve heard the song at the beginning the nuns sing about Maria. It’s not as popular, but it reminds me so much of Abigail. She is a little different, a little mischievous, and a little like a cloud you can’t pin down. But the one line I love best is, “Maria makes me laugh!” And no matter what kind of day we have had. Whether it’s been a clingy day or a everything is ‘no’ kind of day or even a day full of celebrations Abigail always finds a way to make me laugh. She may act exactly like me, but I truly believe she’s going to have her daddy’s humor. It’s something I can’t describe. You’d just have to be around them. But they are both funny people (of course I’m a little biased). But here are ten little quirks Abigail does that we find funny.

1) My mom pointed this one out, and it’s so accurate. Abigail is very similar to the sloths on Zootopia. Especially when it comes to eating. You can give Abigail a fork full of food and she opens her mouth even as the food is inches away. And watching her put the fork in her mouth is painful sometimes. Will she ever make it? It is a suspense as she slowly, slothed-like brings the food to her opened mouth. But she’s feeding herself, so we let her do it, and laugh at her a little too.

2) Abigail is literally the most uncoordinated person you’ll meet. She has zero reflexes and moves slow. It’s a bad, yet funny combo. The best is when she is crawling around and just runs into things. She will turn too early or too late and bump her head into the wall or couch. It never seems to phase her and we figure one day she will figure it all out. Right now we stay clear of her big noggin and laugh at her little blunders.

3) This one is from Jordan’s granddaddy. I never really noticed before because I see her every day, but Granddaddy pointed out how purposeful Abigail’s arms are when she crawls, and now it’s so funny to watch her do it. Every time she pulls herself forward to crawl she reaches as far as she can and pulls herself forward. It’s so calculated and focused. It’s pretty impressive how strong she must be, but it also bad because it leads to the next thing.

4) Horrible distance perception! Because she takes such purposeful pulls with her whole arm length she will just head bump anything in her way including you. Jordan says it’s like in the beginning of Aladdin when the narrator is telling the camera to come closer and then he is like ‘too close, too close.’ You can’t tell her to come a little bit. It’s all or nothing with her, so watch your head. She hits hard and has taken me and Jordan down with her big noggin, laughing the whole way. And since I’ve mentioned the big noggin a couple times I’ll go ahead and explain that it really is big! Abigail is only in the 10th percentile for weight, but her poor head is close to the 85th percentile. Her head has always measured big! So again watch out. When it strikes, it strikes hard!

5) In The Music Class that we attend weekly, they do this things called ‘bums bums.’ I’m sure there’s a technical name, but the toddlers all call it bum bum time so we do too. Basically the teacher comes around to each student and does a little tonal pattern and then the child is supposed to repeat it back. Abigail loves bum bum time! Since the ‘b’ sound is like the one sound she has mastered she is an expert bum bum participant. But the best is when we are listening to the music in the car and the bum bum patterns come on. Abigail will start screaming ‘b’ ‘b’ ‘b’ as loud as she can. It’s so much fun and cracks me up every time.

6) Abigail now has a clear yes and no. So we ask her a lot of yes and no questions to keep her talking. Sometimes she gets stuck in an all yes mood and sometimes (a lot of times) it’s an all no mood. She doesn’t always use them correctly, but we are working on that. Like sometimes you will ask her if she wants grapes for a snack and she will say no and then you offer her a grape just in case and she eats 10 grapes. So you never quite know if her yes is yes or her no is no, but she at least talking. Well the other night I was watching an episode of Grey’s Anatomy (my latest tv obsession), and it was an episode about a patient with Alzheimer’s. Anyways I asked Jordan if he would take care of me even when I had no idea who he was and before he even answered, Abigail very clearly said, “no.”  I wasn’t even asking her. We didn’t even know she was listening, but she heard that yes or no question and responded no. We both bursted our laughing. Thanks kid! Love you too! It’s just little moments like that when her answers are too clear and too perfect for the situation that make it so funny.

7) All her lovely new sounds are great! However, Abigail’s best one is her screaming “ah”. It’s her favorite (and loudest). She normally does it in the morning while I’m getting ready. It’s a constant, “ah, ah, ah” – getting louder and louder in volume as she goes. She’s also normally in the bathroom with me so it echos! But she also loves to say it into containers and bowls. No matter what size bowl, if she finds a container she will pick it up and scream into it.

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8) Whenever you compliment Abigail’s shirt she always lifts it up to show her belly. I don’t think she means to show her belly. She is just pulling up her shirt so you can see it better. But it’s super cute!

9) A lot of times Abigail and I wake up before Jordan does. After we finish breakfast and get dressed, I will take Abigail into the bedroom and let her in the bed with Jordan. She purposefully crawls over to Daddy and gives him love pats (what we call them – Abigail literally just pats you) as she babbles. I think Jordan likes being woken up to her, and it’s so sweet. It makes me laugh though how intentional she is as she makes her way to him, and pats him. She will also pat you if you are crying – it helps dry up your tears pretty quickly to be patted and comforted by such a cutie!

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10) This one is one of Jordan’s favorites. A lot of times he will lie on the ground and read a magazine or be looking at his phone. Abigail will crawl over, (way too close, as already mentioned) flip herself on her back and lie with him appearing to read whatever he is reading. Of course she runs into him and kicks him and flips over on top of him in this process too, but it is great how she just makes herself at home! She just wants to be a part of whatever is going on.

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My Partner Through it All

My blogs focus a lot around Abigail because let’s face it when you have a cute baby that people care about they want to hear about the latest updates and all the details of her development. I love sharing our story and telling about all the things I am learning and things Abigail is teaching me. But this story would not be complete, it would not even be possible, without someone I rarely talk about. Not because I don’t like that person, but because he isn’t one to draw attention to himself. He is my other half, my hubby and my best friend. Jordan isn’t mentioned a lot because this space is usually reserved for Abigail, but Jordan is who keeps our story running and tonight I thought I would share how Abigail has impacted our marriage.

In a world where the divorce rate is skyrocketing and single parenthood is so common, I am thankful I can share my story. Of course we are no experts at marriage. We only have four very short years under our belts and one kid. There are millions of other couples who could give lots better advice, but I am not here to dish out marriage advice tonight. I am simply here to share our story – our short, crazy, unplanned story.

Jordan and I met in college. If I was sitting down with you over smoothies (I hate coffee, so I’m saying smoothies) I would give way to many details about the beginning of our relationship which mostly include him thinking I was a crazy weirdo (he still thinks that too) and me thinking he was too popular and cool to be with the likes of little old me. But since I’m not sharing our dating life, let’s just say it’s a miracle we ever made it to the girlfriend/boyfriend stage. However we did, and then 6 weeks into dating I nearly died. I might be exaggerating a little, but I did have a freak bleeding episode and had a 2 night stay in the hospital that included 4 blood transfusions, 5 IVs and a surgery so it was pretty intense. But my boyfriend of only 6 weeks stayed with me through it all. Well that brought us pretty close pretty fast. Only 2 weeks after my hospital stay Jordan told me he loved me. He said, “as I watched you laying on that hospital bed the only thing I could think was, ‘my girlfriend is going to die,’ and that thought actually made me sad.” That’s Jordan for you. He is a very romantic and sympathetic man as you can see. But it all worked out for me because I caught me a man and that man became my husband a little over a year after that.

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I tell that whole story to say that maybe God brings medical cases into our lives to wake us up and help us realize something. He used my hospital stay to bring me and Jordan together, and now He is using Abigail and all her disabilities to build our family. Did I want to bleed to death to get a guy to fall in love with me? No! Do I want my daughter to have special needs so our family can be shaped and molded a certain way? Of course not. But God is using Abigail to teach us so much.

I am thankful to have Jordan walking this road with me. We have been through a lot with Abigail as any parent has been with their child. We have heard multiple doctors assessments of her, we have had multiple strangers praise her beauty, we have seen her progress leaps and bounds. We have seen her with needles and wires all about her and in her. We have held each other when we both have had to cry. Jordan keeps me sane when this world feels out of control. When I get all emotional, he keeps me steady and level-headed. He is my solid rock, my listening ear and my loyal companion. While I stay home with Abigail and work with her and deal with all her doctors and therapists, Jordan makes all that possible and he helps me be a better mom.

Having a child will impact your marriage. Children change you life in so many ways. We only had 6 short months of marriage before we found out we were pregnant. I didn’t think I was cut out to be a mom. Neither of us knew what we were doing, but we survived. Thankfully God gave us the easiest baby in the universe so Abigail made it easy. But no parent wants to hear there’s something wrong with their baby, and that’s all we have heard from doctors from 2 months on. There’s an issue with her eyes, there’s an issue with her muscle tone, there’s an issue with this or that. But no one can tell us why those issues are there. But through it all I have had a partner and a best friend. Jordan has experienced it all with me. Our marriage has been forged deeper because of all this. When we have had no one else we have had each other.

Children impact every part of you. They impact relationships and they impact your marriage. Some parents build their lives around their children and not their marriage which is devastating. Some marriages break up when one spouse or the other finds out their child will never be ‘normal’. There are thousands of reasons marriages don’t make it. But when calamity strikes, when you receive that bad news you never want to hear, when the world just seems too much to handle – I couldn’t imagine doing it alone. I am thankful our marriage has survived this so far, and I pray it continues to stand strong. I love living life with my best friend! I love always having a friend to talk to. I love my husband and our little family of three.

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Growing Up Slowly

When you have a child time seems to speed up somehow. In just a few short months Abigail will be three years old. Where has three years gone? I still remember being pregnant with her. I had horrible night sickness (my morning sickness always hit around 3 and stayed all evening). And around week 12 I remember having multiple thoughts that I was going to die at any point, but the only thing that kept me going was that I was growing another life, and her life mattered too much to give up. But here we are almost three years later and I am glad I kept shoving food down my throat after all because having Abigail was worth all those weeks of sickness.

I have no idea how parents of typical children do it though. I mean an average child is sitting by six months and is walking by a year. They start talking and being independent. They get sassy and push the limits and they know where every button of yours is. Your baby grows up in a blink of an eye! You might get a few cuddles here are there but after they are mobile they don’t sit still for long. Again I just don’t know how you do it!

We have been so blessed in a weird way that Abigail has grown up so slowly. I’ve never thought about that before, but it hit me the other day we are getting a small blessing in disguise. Don’t get me wrong I wish everyday my little girl could walk and run and play like every other 2 year old. I cry that she cannot communicate the way she wants to. But even in the bad things and the things that don’t make sense I truly believe you receive little blessings in disguise. Sometimes you don’t see those blessings while you are in the middle of the storm, but they are there. Abigail herself is my blessing. She is an amazing little lady! But the fact that, as a mother, I get to soak in every stage a little longer is amazing!!!

We had a newborn basically for about 10-12 months. For Abigail’s first year of life she really wasn’t aware of her environment. She just loved watching people’s faces. She had barely any head control and her muscle tone was basically none existent. She was exclusively breast fed, which was not my choice but she wouldn’t eat baby food very well so we did what we had to do. That first year was hard!! Abigail did not show a lot of progress. We had no idea what was going on. We had no clue how to take care of a baby, much less a baby that doctor’s kept telling us ‘wasn’t normal.’ The doctors kept telling us things that we didn’t understand or that we didn’t like. We loved our baby and she was the happiest, easiest newborn ever so it was hard for us to see anything ‘wrong’ with her. Around a year old she was still around 5-6 months developmentally, so I got to savor those newborn moments for longer.

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Abigail around 7 months – she was still the sweetest thing you ever saw! But she had no interest in those toys you see. We always tried new things though.

Then her second year of life came and things started to progress. She became more aware of her environment, she started to like food, and she showed true potential physically. We began to learn we didn’t have to listen to everything the doctors said. We began to learn the system and find things that were helpful for us. We had amazing therapists that encouraged me and worked with Abigail diligently. But I was still able to savor those baby moments longer because she was around a 6-9 month old developmentally.

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This picture means the world to me! Abigail was around 15 months in this picture. I left her on the couch to go get ready (crazy huh? but she never moved so it worked for us), and I returned to a smiley baby and an overturned bucket of toys! I snapped a quick picture because I was so excited! This was the first time Abigail had ‘played’ on her own!!!

Today, we have hope like we have never had before. Abigail is doing the best she has ever done. She is eating (and a lot of times helping herself) normal table food, she is moving, she is learning to play in new ways, and she is trying to communicate like never before. We are in such an exciting time! I feel so much more confident in what I am doing. Medically Abigail is healthy and at this point her doctor is simply trying to find the cause of why she is the way she is. But if they never give us an answer I will be okay because she is progressing forward every day.

Abigail is still only around a year old developmentally maybe 18 months in some areas cognitively. But if course she cannot sit or stand yet. But for almost three years I have gotten to savor what most parents only have 1 year to experience. It is like time has slowed in our house. This means we get to see the tiny little steps of progress and we celebrate the tiny victories. This means that sometimes the days are long! I get tired of having to lug her everywhere, because goodness she is getting heavy!! Sometimes it would be so convenient if she could sit because we could do so many more things. Sometimes I have to be creative while we are out, and about, and going to a bathroom with her in a public restroom when I forget the stroller is a trip. But I am savoring!

We may be in the toddler stage for a long time. Honestly, she may never leave it. We have no idea what Abigail’s future holds. I tell people all the time. Abigail has the potential to be a 100% normal 5th grader who you wouldn’t even know went through all this when she was 2. On the other hand she could be living with us forever because she never leaves childhood mentally. We have no idea what her future holds. But right now I know we are hitting the toddler stage hard, and after 2 years of being in baby stage that is tough on this mama. I’m watching Abigail grow and mature everyday. I see my baby growing into a little girl. She is beautiful in every way!! And while she might not be growing up like every other toddler, I appreciate that she is growing slowly. It gives my mama heart time to soak in every moment, every change, and every day with my little sunshine. While I wouldn’t have chosen this life for us, I am blessed to have a little one who is growing up slowly.

About Me

 

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For those who need to see hope in this world.

For those who want encouragement in parenting.

For those who want honesty about living with a child with special needs.

This blog offers a positive view on children with special needs; written for special needs moms, stay at home moms, and those who are interested in my daughter’s progress. If you love inspirational writings, adorable toddler stories, and a heart felt love for children than this is the blog for you! The posts on this site include stories of my daughter’s progress, things I have learned from being her mother, and life with a special needs toddler because she is the inspiration behind all I write. The journey with our daughter started when she was two months old. It has been an almost two year process of tests, therapy and tears and we still are not sure why causes our daughter’s developmentally delay. This blog tells our story of the day-to-day life as we discover how to love each other through the delay.

Welcome to our family! My name is Heather. My husband, Jordan and I were married February 1, 2014 and we had our beautiful daughter, Abigail in May 2015. My husband works hard providing for us at his retail job while I stay at home with our joyful little girl. She keeps me busy between occupational, physical, and speech therapy. We live in Atlanta, Georgia, and love spending time as a family. We are active in our local church and are Christians who love God and have an intimate relationship with Him. My prayer for this blog is that it would inspire you to love others more and encourage you in ways you could never imagine. Life is hard, and we are often dealt cards we were not expecting, but those hard, unexpected things are sometimes the greatest blessings. That is what Abigail is to my husband and I, a great blessing! Abigail gives us encounters everyday that we treasure with all our hearts.

So please, if this blog sounds like a good read, subscribe to my posts! Send me an e-mail with comments or questions, or find me on social media. You can find all the links on the left side of my home page. I want to tell our story and help others with theirs. Thank-you for stopping by, and hopefully we will talk to each other soon!

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The Gift of Motherhood

As Mother’s Day has come and gone this past weekend this quote has been on my mind, “God doesn’t call the equipped. He equips the called.” I have heard this quote more times than I could count! But it applies so well to my motherhood. I was not equipped to be a mother. I am selfish, independent, stubborn, quiet and clueless about children. I did not really want children. I knew we weren’t ready (who is?). But everyday God equips me and gives me the strength the face another day.

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Motherhood is about seeing the joy of your child as they explore this world!

When Abigail was a newborn, I literally just turned into a robot. Feed the baby. Change the baby. Get baby asleep. Eat something myself. I don’t remember a lot about those first few months. On top of all the stress a newborn brings, we were also discovering that our baby wasn’t quite normal. Abigail’s first year of life was quite a blur with all we had going on. I never felt like her mom. I was simply a glorified babysitter. I didn’t feel like a mother. But one thing I did know was that I loved my little girl, and that was enough.

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It’s about letting them explore new things!

It has taken me quite awhile to learn that motherhood itself is a gift. A precious, wonderful gift. I would not trade being a mother for anything. Since we have moved to this area I have become a full-time mom. Abigail is my job. She is my buddy. She is my coworker. She is often the only human I see some days. I love my little girl my than I ever thought possible. She lights up my life. Honestly, she is my life. I don’t do a lot apart from her. If people talk to me, it’s about Abigail. Sometimes I need a little me time here and there. But I treasure my gift of motherhood. I am thankful God have me Abigail. She is perfect in every way. I truly wouldn’t change a thing about her. She teaches me so much, and makes me a better person. My gift may come in a different box than everyone else’s, but she is perfectly and wonderfully made. And I am so thankful to be able to celebrate the gift of motherhood because of her!

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Comforting them in their time of need (and surgeries).

But I still have so much to learn about motherhood. I strive to be the best, but God has been speaking to me and calling me to more. Sunday morning I surrendered fully to His calling of motherhood on my life. Our pastor brought a wonderful word that morning about Hannah. He said something that just spoke volumes to me. “God’s grace is absent at certain times of our lives to bring us to a place of dedication.” My own version would read something like, “Maybe God gives us difficulties (a special needs child) to bring us to a place of full surrender.” But then he made the point that God doesn’t only call us to fully surrender, God also calls us to fully exalt. Even in the hard times – the times it feels like God’s grace is absent. We are called to worship and exalt the King of kings and Lord of lords. So that’s what I want to do. I want to dedicate my motherhood to God. I want to surrender it fully to God. Full reliance has always been my motto since college. And lately I have forgotten it. I have taken on loads of things that aren’t mine. I have forgotten to rely on God. I have forgotten how big of a God we serve. I have forgotten to exalt Him. But on this past Mother’s Day 2018 I pray I can be the mother God has called me to be because I have first surrendered my all to Him. I have first sought His face. I have fully relied on His strength. I have dedicated my life to Him. I love being a mom to this precious little girl, and I just want to be the best mom I could possible be. I can’t do it alone, and I am thankful I do not have to. I am thankful that God has given me this precious life to raise, and I am blessed to be her mama!

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Always watching and copying me – even when I am attempting to do crunches.

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!

Making Lemonade

So many people think it’s the parent that helps his or her special needs child. In so many ways that is true. We are our child’s advocate – his voice when he cannot speak for himself. We fight hard for what he needs. And it often is a fight because people often do not help you. We help our child shine brightly in a world that often does not accept what is different or a little odd. We love when it is hard, and often fight battles no one will know. But I think any special needs parent will tell you that their child has helped them in more ways! I once read a parent of a special needs child say that she does not make lemons out of lemonade her son does. She isn’t changing him at all, he is changing his mother.
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My little girl teaches me every day that this path is good. Even with the shadows there is still sunshine!


As a special needs parent you learn that you are stronger than you ever thought possible! You learn to have patience and your faith has the opportunity to grow by leaps and bounds if you let it. We really are not anything special. We are just parents who love our kids, and like every other parent we just want what is best for them. Sometimes it’s easy to seem excited about your child’s progress, because even tiny new steps are exciting. But other times (a lot of times) this life is draining. Between doctors, tests, surgeries, paperwork, appointments, therapy, and their endless needs – special needs children require a lot of work! It is not always glorious and heaven like.
Every year around Abigail’s birthday is the hardest for me. It should be an exciting time as Abigail is growing older, but it’s tough on my mama’s heart. I try to make each birthday a big deal, and special for her even though she has no idea what is going on. I try to be excited and happy about a new year! But it is hard. This is often the time of year I get the most depressed. Yes, my little girl is another year older, but that means she is getting further and further behind. The clock moves faster than her progress, and it scares me. As Abigail gets older her disability will become more and more evident. It’s cute when she is two and can’t quite talk or walk or isn’t potty trained yet. But what happens when she is 6 or 8 or even 10 and can’t do any of these things still? It won’t be cute anymore. She will be labeled and judged and instead of people coming up and talking to her they will walk by trying to not make eye contact with the special girl in the wheelchair. So each year on her birthday I get a little sad thinking of how my innocent, beautiful girl is growing older in a world that is tough for those who are different.

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Birthday Princess

But like that mom said, having Abigail in my life is making me turn my lemon-like attitude into lemonade. These last few weeks I have had to do a lot of praying and soul searching to not get stuck in my hole of negativity. I want to be Abigail’s biggest cheerleader, and how can I do that if I’m crying about her getting older? But the one Truth that keeps coming back to me is that Jesus was scared of His calling too. God has called me to be a mother to a special needs daughter. That task is daunting and hard, and often I feel unworthy for such a task. But in the garden Jesus was agonized about His calling too. He didn’t want to experience the pain and separation of the cross. He sweated blood he was so agonized with His calling. But He knew this is what He had to do. If Jesus can wrestle with His calling them I know God will allow me to wrestle with mine. He allows us to have fears and doubts. He allows us to feel overwhelmed and uncalled. But it’s how we deal with those emotions that matters. Will we run to God for full reliance on Him or will we try to conquer our mountain by ourselves. Let me give you a hint – we can’t do it alone. Alone we will fail. But when we fully rely on Gods power and strength then he calls us to do things we never thought we could do. He empowers us. He emboldens us. He fills us. He washes away doubt and fear and worry. In Him alone can we face our calling. The journey is lonely many times. But God never leaves us. He always promises His presence! And in the darkness He only shines brighter.

The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance. Psalm 16:6
When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. Isaiah 43:2
You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore. Psalm 16:11
You will seek me and find me, when you seek me with all your heart. Jeremiah 29:13

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!

My Marathon

It is funny, if you had told me when I was pregnant that my child would have special needs I would not have liked it. It would have overwhelmed me, and I would have a million questions that could not be answered. I already was scared about being a good mother to my baby. I cannot imagine the fear that would have overwhelmed me if we had found something out about Abigail in utero. The amazing thing about our story is that it has been perfect for me. I really would not have changed a thing. The way we have found things out so far has helped me process everything at my speed. I can honestly say I do not have any fear of the future or any worries about Abigail.

I know that is hard to believe. I am concerned about Abigail’s future. Will she be able to function and learn in a regular classroom? Will she ever walk independently? Will she grow up and leave us, and make a life of her own? But I do not worry about these things. They do not keep me up at night. I sleep pretty well! My heart is at peace about Abigail, and I can say it is all because of how slow this process has been. I am a very slow processor. It takes me a while to think about big decisions, and process my feelings. And having Abigail’s story unfold slowly has helped me so much!

This whole journey has been painfully slow. It has frustrated me at times that no one seems to be able to help us know what is going on. Let’s be honest I still get impatient with doctors about how slow answers are in coming. We still have no answers even with all the tests that have been done. But I have come to realize this week that if everything had happened at once I would have been overwhelmed, and wanted to throw in the towel a long time ago. If we would have had a diagnoses in the beginning and Abigail’s tests had shown results, or if she had had medical needs it would have been a lot to process all at once. But everything happened in such slow stages that each time I had time to process and question and plan. I had time to prepare for the next step. It is like Someone knew I needed that. Someone knew I needed a moment to breathe and take everything in.

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Our precious, perfect newborn. Right about when this marathon journey started.

We had no idea anything was amiss with Abigail until she was two months old. Then it was her vision. Since I always plan for the worst I automatically figured she was blind. I remember after our pediatrician told us that her vision was off and he was sending us to an ophthalmologist that I researched Braille that night so I could learn it. But then we had a few months to process that before the next thing hit at four months when Abigail was diagnosed with low muscle tone and we were sent to a neurologist. And that has been the story ever since. A doctor will tell us something new or run another test and we have time while we wait to process the news.

This journey has not been a sprint. It is a marathon. I have never been a runner, but I would rather run the marathon of life and take it slowly than a break neck sprint any day. Marathons are still hard. You have to train. You have to build up to run the full race. It is physically and emotionally draining. But running makes you stronger. It builds the muscles and helps you be a better, stronger person. My marathon is training me. It is strengthening me. And it is shaping me. I am thankful that God has allowed me to have time to process. That He has given me this marathon to run with my little girl. I just pray I continue to have the strength to keep running well, and that I run this race to the best of my ability.

Dirty Soles and Knee Holes

I think we have official hit toddler-hood around here. We have had hints of it here and there, but I can officially say we are there. Abigail will be three in about two weeks, and she is going to be a full-fledged toddler. Usually toddler refers to babies who are toddling around and learning to walk. Toddler hood can mean some fun adventures as children get more and more curious. It can come with some defiance as the child is learning independence. It can be a hard time for the parent as they enter into a new, challenging time. But it is also so fun to see your child learning and growing into a little person with their own likes and dislikes and attitudes and personalities.

Well we have hit toddler hood head on! We have a little girl (my baby girl) who is taking steps and trying to be Miss Independent. She is learning to say ‘no’ and is pushing our buttons. She gets into things she shouldn’t and squeals at us if we aren’t doing things her way. She loves trying new things and being asked questions. She is learning she cannot do everything she wants. She can’t pull our hair or rip our glasses off our face – two things we are trying to get her to stop!

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She loves to push this bus around the house – this is her helping me “cook” in the kitchen…really just getting under my feet so I sent her under the table to play

It’s such a fun stage, but it is all new for us. We have to actually parent. I know that sounds awful, but Abigail has always been so easy and has never gotten into anything so we had an easy job of just taking care of her. Now we have to step up our parenting game and teach her right and wrong. She hates being told ‘no’, so we are working on finding ways to redirect her. We are working on how to discipline. But I don’t want to make it sound like she is awful. She really is as sweet and joyful as ever! She is just a toddler – into everything and learning her boundaries.

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That precious smile and dirty pink shoes!

But what I am most excited about in this stage is dirty soles and knee holes. Abigail’s shoes are dirty! Her pants have wear and tear on them!! We don’t wear shoes a lot around here. It’s not uncommon for Abigail to go barefoot to restaurants and stores. I never see the need to wear shoes on a child who will never touch the ground. Shoes are more for warmth than for actual purpose. So her shoes look brand new! Her pants and clothes look brand new too because she never sat and crawled and got dirty. Until now. Her little tennis shoes that go with her braces are dirty! We have been doing a lot of walking in our neighborhood and her shoes show her hard work. Her pants are getting worn where she has been crawling around so much. She has boo boos all over her. Bruises and cuts from crawling around. We had to put on our first band-aid yesterday. It lasted about a minute, but it was our first real boo boo.

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Looking at her boo boo

My almost three-year old is an official toddler! I have no idea how to parent a toddler. I have no idea how long we will be in toddler hood. But I plan to savor every day of this new chapter. My baby girl is growing up. I am excited what her chapter of toddler hood will bring. What mess she will get into or what she will get in trouble for. What her little mind will think of and how fast she will learn new things. I am excited to she her grow stronger and walk more and more. My back is giving out before her legs do now, and that’s scary! I want to keep up with her, but she is literally lapping me. This new chapter will be amazing to watch unfold, and I am thankful for those dirty soles and knee holes!!!