My Wish for You

I love books!! I have always been an avid reader, and I knew I would always read to my child once we had one. I can never resist buying Abigail new books. I found this new one at Barnes and Noble the other day, and it is officially my new favorite book to read to Abigail. It’s called, “I Wish you More” by Amy Rosenthal. Here’s the link for it on Amazon if you are interested.

It’s a little poem so beautifully written about what you wish for your child. Here’s a couple of pages from the book itself to show you.

The pictures are my favorite part. But the last page reads, “I wish all of this for you, because you are everything I could wish for…and more.” Makes me cry every time!

The front cover says, “Some books are about a single wish. Some books are about three wishes. This book is about endless good wishes. What will you wish for?” So I wrote a little poem of what I personally wish for Abigail. It’s not all cutesy like the book is, but it’s still my heart to my child. But if you need a new book to read, or a present for Easter then check this one out!!

Abigail Paige Lidh,

I wish you to know you are beautiful, not just on the outside (even though somehow you are the most beautiful two year old around), but on the inside.

I wish you would stay joyful always.

I wish you would always be determined and fight for good.

I wish you would have wisdom and discernment in all you do.

I wish you would grow strong in the Lord and follow Him.

I wish you would always know Mommie and Daddy are so proud of you.

I wish you knew how many people love you and how many people you inspire daily.

I wish you would find your passion and purpose in life and focus on that.

I wish you to be a humble servant.

I wish you to be a prayer warrior.

I wish you knew you are capable of so much.

I wish you will always smile through life’s greatest obstacles.

I wish you won’t ever let what people say determine how you feel about your self.

I wish you would find your self worth in Jesus.

I wish you would know Jesus loves you simply because He does.

I wish you would rely fully upon Him and trust Him in all you do.

I wish that when this life doesn’t make sense or isn’t fair that you find the peace of God.

I wish that you prove everyone wrong and make your own miracles happen!

I wish that you keep your childhood innocence for as long as possible.

I wish you get your daddy’s sense of humor.

I wish that you never give up.

I wish you always know you will always be my baby girl.

I wish you so many things that I could fill pages, but mainly I wish you know you are the best thing that could ever happen to us and we love you beyond words.


I will always love you, Abigail!


Off to the Races

Well folks we are off to the races! Our lives just got very exciting and action packed after a very long time of waiting. Of course we don’t know anything officially about Abigail’s diagnoses, but chances are looking better than ever before that we will know something soon. I can’t give a lot of detail simply because I don’t have a lot of details to give. The doctors want to run a muscle biopsy on Abigail before they give us any official diagnosis or answers. They are hoping the biopsy will reveal the answers they need to complete the puzzle of sorts, which would also be known as my daughter.

We had a whole exome study done of Abigail’s genes last year. Out of every single gene there was one that was mutated, as they call it. That one mutated gene is the gene that affects muscles, and would explain a lot of why Abigail is the way she is. However, since all her other tests have been normal they would not give us a diagnosis or put a name on anything for us. However, we completed an ultrasound and another EMG last week (it’s a test where they stick little needles in Abigail’s muscles and test how they respond to stimuli – it sounds a lot worse than it is), and the doctor said he definitely saw effects of that mutated gene. Hence why we are going for the muscle biopsy to prove what he saw was right. If the muscle biopsy agrees with all these findings we may just get a diagnosis three years later!

Of course this diagnosis won’t change anything for Abigail. Especially since it seems to be genetic there’s no fixing it. Therapy and working with her will be her best forms of medicine, and she’s already improving so much we aren’t too worried about her. Of course she will have to fight to do everything. Things won’t come naturally like they do for most children because her muscles are essential diseased. But if anyone can overcome the odds then Abigail can. I know we will have lots of information to take in and questions for the doctors when a diagnosis does come, but even if their prognosis is that Abigail won’t be able to walk I don’t think I will be able to believe them. In just two days of having leg braces, she is already standing better! I think that girl can do anything if she wanted to.

Of course we realize that this muscle biopsy won’t be easy. They will be removing a piece of Abigail’s left bicep, and we have yet to hear all the details. And we also understand that the biopsy could come back clear and we would be back to square one with Abigail just being a puzzle to figure out. But we are praying for some answers. We are praying she continues to grow strong and improve. We are praying for wisdom for our doctors. And we are praying that Abigail will fight hard, and show people that she can overcome any obstacle!

We are so proud of her and her determination! She is such a trooper through all this. Poor thing has been dragged around from doctor to doctor. She has undergone a lot of scary looking tests. She has been fitted for equipment. And there has been a few tears along the way, but mostly just a lot of smiles. I love her happy little personality and I am glad she can smile through it all. She helps us feel better about all this because we know she is strong and it takes a lot more than some scary diagnosis to get her down! So we are off to the races to fight, to get some answers, and to show a little joy in this world.

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Our Amazing Wonder

I forget how tall Abigail is. I know that is weird, but I just always forget that she would already come up to my waist if she could stand next to me. She is pushing three feet tall now, but I forget that. When I help her stand using the couch it hits me every time that she is tall. It is such a simple thing, but it always amazes me because I never get to see her stand up. That is how Abigail is though – just little things she does catches you off guard and amazes you.

Abigail never stops to amaze me in what she can do and what she tries to do. Just this week she has been wanting to hold her own cup and drink herself. She has learned to take sips from a glass. She pushes herself up completely with her arms so she’s almost in a sitting position. She is wanting to sit up and stand all the time. She is trying to tuck her legs underneath her to get on all fours. Her signing abilities have improved. She now signs without being prompted, or if she overhears a word she knows while people are talking she will sign it. It is like one thing after another. We missed therapy this week, so when we see our therapists Monday they will be so proud!


Our big girl enjoying her juice at Chick-fil-a!

It is usually simple things that amaze us, but sometimes it is the simple things that matter most in life. Because Abigail is so far behind developmentally, it is easy to presume she does not understand a lot of things. I am even impressed what all Abigail understands. But just because she cannot communicate does not mean she does not understand. She knows exactly when people are talking to her and when they are not, and she does not liked to be ignored. It is not rare at the dinner table for Jordan to be telling me about his day and Abigail will start screaming at the top of her lungs. Not a scary ‘I’m hurt’ scream, but a ‘look at me I’m cute and you’re not talking to me’ scream. We have tried to ignore her, but usually if you ask her if she has anything else to say she is happy you paid her attention and will allow you to continue your conversation again. And it is not just in person. Abigail loves talking on the phone. I will put the phone on speaker and lock it and hand it to her and she knows to put the phone to her ear and talk. Her and Daddy often talk on the phone and she does the screaming war then too until he talks to her and not Mommie. She is a mess!

Abigail only knows the word yes because we have not taught her no yet. She can sign yes (it’s one of her favorites) and sometimes she will vocally say a little, ‘yay.’ But we realized we had to start teaching her no because she says yes to everything. She knows when you ask a question and she will respond yes. So since she cannot do the real sign for no in sign language her therapist told me to just have her point her finger and turn her wrist back and forth. But Abigail cannot point and wave at the same time yet. So right now if you ask her to say no she simply points at you. It is still cute! But she catches on so quickly! I try to introduce new signs every week, and she always picks them up and uses them. I love being able to communicate better with her, and I think she loves her signs too. When she signs something and you respond to her, Abigail gets the biggest grin on her face – it’s like she is saying, ‘hey you heard what I said!’

And then we come to those legs. When Abigail was about 15 months I got her to stand and my mom snapped a picture. IMG_3679After that I could never get her to do it again. Plus, she was not ready or willing to do it. Now she is! Oh she wants to stand and pull up so bad. Her legs want to work, but they have no idea how to work. Abigail often stands on the side of her feet and her toes remain curled under. But I cannot even change her now without her turning to squirm away or trying to sit up. It amazes me how much she wants this. She is such a little fighter. Her body is literally incapable of sitting or standing, but that does not stop her. She groans and grunts and struggles to do it. Her arms have to be the most toned arms of any two-year-old. But she never gives up. She never stops wanting to try. She never quits. Everyday she learns something new. Everyday she amazes me. Everyday she fights. And that is amazing to me!


My Hope Restored – Part 2

A year ago a blogged a beautiful story about how God renews us; how He gives us grace and restores our hope. You can read it here. A lot of times Abigail’s situation seems hopeless. Even as I write this we have given up on our doctors. The geneticist just said they could no longer help us, and our neurologist has come to a dead end we believe. We are seeking other doctors to go to, but for now no one seems to know how to help Abigail. It is frustrating, confusion and, as a parent, it makes you feel helpless because you cannot do anything for your child. But a year ago I wrote this, “But these last few months I have come to realize that if I do not think positively about Abigail’s situation, and give her the encouragement she needs than who will? God has shown me that being my daughter’s biggest cheerleader is my calling for now.”

What an encouragement for my soul today! That is why I have come to love blogging because it is like keeping journals. You can always look back to see God’s hand working in your life. So many other special needs parents who are much wiser than me have told me that I am my child’s best (and sometimes only) advocate. I have to fight for her because so often the medical field and even the school systems do not care for your child.

These last few nights that I have been putting Abigail to bed I have been whispering her worth to her. It makes me cry every time. But even if she does not get it I want my daughter to know she is smart. She is worthy. She is beautiful. I want her to know we are proud of her. I want her to keep fighting and stay determined. I want her to know she can do great things. I want her to know as much as mommy and daddy love her there is Someone who loves her even more. I want her to know that God has a plan for her, and she is capable of bringing Him glory even now.

These moments with her mean so much to me. I love being able to stay home with Abigail and have fun with her and take care of her. I am often way too protective and stuck in my ways, but I would not trade these precious days with anything. My little girl has such potential to do great things. My dreams for her may have changed, but my hope in her is higher than ever! Everyday I see her improve and grow stronger. She is understanding so much now and she has the potential to do incredible things in her future.

So even in the face of all we have against us, my hope is being renewed. I am cheering for my daughter and I want her to know she has so many other cheerleaders too! So many of you reading this blog have encouraged me in ways you won’t even know. I just wanted to say thank you for following along with us in our journey. Thank you for all your encouraging comments. Thank you for loving my little girl from near and far. Thank you for being there! And watch out because I truly believe there are some exciting new things about to happen in this little girl’s life!

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Bloom Where you are Planted

I love spring time. I love the newness of everything. How everything is turning green and flowers are beginning to bloom. How winter’s slumber is being shaken off, and life is awakening. Springtime just brings a pep in your step and a song in your heart. At least it does me. And goodness knows getting outside helps all those winter blues fade away. The weather was gorgeous today and I could not help thinking that springtime is coming!

I bought this cute springy shirt for Abigail a few months ago and it was perfect for today! Bright yellow with a huge flower on it! It instantly made me think of the saying, “Bloom where you are planted.” I’ve never thought much about it before, but that saying applies so much to Abigail. So today she wore her yellow shirt proudly, because Abigail is most definitely blooming where she is planted!

I was told my baby’s eyes were not normal at two months old. We instantly thought blindness, but today her vision is perfect! Yes, she wears glasses to help her eyes stay focused, but her vision is perfect. Abigail is known for those cute pink glasses, and countless strangers brag abt them. Even in the face of bad eyesight, Abigail is blooming!

First day in those pink glasses!

At four months we were told that Abigail had low muscle tone – hypotonia (they call it floppy baby syndrome). She has met zero milestones. She cannot hold herself up. Carrying her is like carrying a bag of potatoes. She is so heavy and does not help at all! She stays under the ten percentile because she has no muscles and muscles weigh more than fat. But despite all this Abigail is crawling! She has mobility. She is pushing up and she wants to stand so bad. She can sit with minimal assistance. She is doing things that amaze everyone. In spite of her diagnoses, Abigail is blooming!

Abigail cannot keep up with other children. They move too fast for her. Children her age are too advanced for her and run away before she can play. And children younger than her just want her glasses or her hair which scares her. But she is getting so much better around children. She has been crawling around with her nephews and they pass toys to her. In music class she is brave enough to get down on the floor and crawl around now. She is talking and laughing in class which means she is getting more comfortable around other toddlers. Even with her fears, Abigail is blooming!

In every area I feel like Abigail is blooming. She is becoming stronger, more social, and she is growing every day! Abigail has no idea that she is developmentally behind. She has no idea she is unique. She has no idea that she lives a very weird life compared to a normal three year old. She is one of the happiest children you will ever meet. She is smart. She is kind. And she is going to do BIG things!

I just feel like if this little girl who has so much against her can bloom where she is planted then we all can. I would never wish this life on any child. But I am a proud mama because even in the worst of situations and what life has to throw at her my daughter is blooming. She is a determined little fighter. She is fiercely independent and a little rebel at heart. All this makes her a force to be reckoned with. She is going to knock down barriers and is going to make miracles. Abigail will be able to bloom wherever she is planted!

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.


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.


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.


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.


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.