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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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.

Seeds of Hope

Gardening is not my thing. I was not born with a green thumb. I have dreams of having plants in my home, but I kill everything. I always wanted a venus fly trap when I was a teenager, so I got one for my birthday one year. I fed it a lady bug and killed it. I did grow some rosemary plants this summer. They were looking great and then I knocked the pots off the windowsill promptly killing those. I do have one plant by my front door that has miraculously not died for six months. I don’t even know what it is, but it’s apparently my perfect plant. I water it when I think about it and do nothing else with it and it’s still growing so I really like it whatever it is.

While gardening is not my thing, it has always been a hopeful dream for me to become a gardener. My dad has always planted a vegetable garden every summer, and I think it’s amazing that such a tiny little seed can grow juicy red tomatoes, and the perfect okra. Plants are amazing things! They start as a tiny seed and with a little bit of water, sunlight, and care they can grow to be ancient oak trees, or food to nourish households, or flowers to add beauty to tables. I know there’s a lot that goes into growing plants that I don’t understand, but the whole process amazes me!

Last year was a season of winter in our household. We had just transitioned to a new home and a new city. We were looking for jobs, a new church, and doctors for Abigail. We were figuring out a new routine and adjusting to leaving behind old friends and finding new ones. It was very quiet and uneventful as the winter season usually is. We were ready for a new season to be upon us, and life to begin again. Jordan would often remind me that ‘this is just a season, Heather.’ Well sometimes a few months can feel very long when you are waiting for things to happen.

But as the new year approached and I began thinking of new goals and dreams I had for 2018, hope came too. Right now this hope is just in tiny little seeds. We have not seen anything mature yet, but God has blessed us with these seeds of hope and I think spring is soon coming for our family. These are some seeds of hope that are being planted in our lives right now:

1.) Jordan thinks he has found a way to begin a teaching career, something he has been wanting for a long time now. He will have to work and study really hard the next few months to accomplish his goals, but if anyone can do it he can! If all works out perfectly he could quit both his retail jobs, be home more, and he would be happier with his career. We are praying big time for the next couple of months to go well.

2.) We had a meeting about Abigail going to preschool in the Fall. I was very hesitant about it before going in, but the ladies at the meeting reassured me about all my doubts and fears, and now I am excited about her starting school. She would have double the therapy time, and be able to socialize with children her age. I just think huge improvements could happen! I’ll be a basket case when she leaves me (it will only be four days a week and half days at that), but I know it will be the best for us both.

3.) We also just met with an equipment guy today, and we are going to apply to get Abigail a stander and a wheelchair she could push herself around in.

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This is the stander will we be getting!

I am so excited to get her these pieces because it will help her so much! Our physical therapist is also considering getting her into leg braces to work on strengthening her legs. There will be a lot of changes for Abigail, but much needed changes to try to help her walk!!!

4.) Abigail has been pulling up on everything lately! Oh, she wants to stand up so bad so I know the fight is in her to gain mobility. She is a crawling machine. Her poor elbows stay carpet burned now because she pulls around so much. I invite her to follow me from room to room instead of carrying her, and she is so good about listening and coming with me. She is also becoming a better communicator, and can tell you when she is done or when she wants something. Her speech is even coming along in its own way. Just so many improvements happening almost over night!

5.) There are so many areas I want to help in and there are so many needs I see. I keep seeing little doors cracking open in front of me. I am praying the right opportunity comes along and that I can see it when it comes. Through things at church and talking to my friends and other moms at therapy my eyes are opened to things that need to happen. I am ready to do more, and I now when the time comes I will be ready to respond.

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We are both so thankful for little seeds of hope (and some warmer weather)!!

So all these little seeds are being planted, and I pray that they take root and grow into huge blessings. Waiting for a garden to grow is hard, but while you are waiting for the fruit to be produced there are so many things you have to do in between. I know we will be busy watering and nurturing these seeds to grow into beautiful blessings this year. I only pray we are good stewards of the things God is blessing us with, and that the fruit will produce new seeds that we can share with others.

I have learned so much in this season of winter that I know will help as the spring time approaches. God has taught me a lot about trials, temptations, doubts, patience, love, self-control, relationships, and so much more. I am thankful that God gives you quieter seasons of life to allow you to learn the things you need to learn before the busier seasons come. I feel prepared and ready for what the days ahead may hold. I know that I will never be done learning and I still have a lot to work on personally, but I also know that I am not alone. And when then seeds begin to take root and grow you better bet that I will be admiring my life with awe and with a very thankful heart!

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How Abigail Learns

We began occupational and physical therapy when Abigail was just 5 months old. At that point we had no idea what we were in for. We had no idea how our journey would proceed. We simply knew we had a little baby girl who the doctors were telling us was way behind in muscle tone. Abigail was our normal and still is. We had no idea a five month old shouldn’t be doing these things. Thankfully we had some great therapists who helped us learn what we should be doing with Abigail to help strengthen her little muscles.

Abigail has always been progressing forward but at the slowest rate you could ever imagine. The last time we went to see our neurologist she asked how Abigail had been doing. I was so excited to tell her about all of Abigail’s progress in the months we hadn’t seen her. But putting it in words seemed so dismal. “Well she can kinda roll over now and she is making more noises.” It just didn’t sound that impressive, but if she could just live with Abigail for a few days you can see her huge strides of improvement. But to strangers Abigail is still a two year old who can’t sit, stand, walk or talk.

So how does Abigail learn? How does she get stronger? Repetition. Repetition. Repetition. We have been doing the same things with her from the beginning it feels like. Sometimes things click right away. It only took her a couple of times to learn how to fist bump and wave bye-bye. Teaching her a new sign for sign language usually only takes a few times as well. Now she does not correlate that the eat sign means she is hungry, but if you ask her if she wants to eat she does the right sign so we are getting there. But feeding herself has taken 18 months. We have tried everything, and then one day out of the blue last week she just picked up her goldfish and ate it perfectly by herself. I am not sure why she catches on to some things instantly and other things she still does not get even though we have been working with her for months.

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Either way, we have to be intentional with Abigail. And slow. You cannot ask Abigail to do something and then walk away because she did not do it. Chances are she will do it as you turn your back. Her processing time is slow. So it takes her a minute to wave bye when you tell her to. You just have to give her a chance to listen and process what you said. I like this about Abigail because it has taught me slow down. I am a rush, rush, rush kind of person. Having Abigail has taught me to pause now and then.

Abigail is a smart cookie. I think my husband put it best. Abigail is more and less than meets the eye. Let me explain. When a stranger first looks at Abigail he or she probably thinks she is a normal child. Then I tell them that she has special needs and cannot sit, walk, talk, etc. So then Abigail becomes a special needs child who cannot do anything in their minds. But she is so much more than her disabilities. Sure she cannot sit up on her own, but if you ask her to dance, point, find her belly, or laugh she can follow your instructions perfectly. She understands what people around her are saying, and I swear she can sense people’s emotions. She definitely knows when Mama is leaving and her physical therapists has told me multiple times what an amazing little sense of humor she has. Abigail is pretty fun to get to know and everyone who has spent more than 10 minutes with her just loves her!

Abigail’s processing time may be slower than others, she may not be able to physically compete with another toddler her age, and she cannot communicate with words, but everyday she is learning and growing in her own way. At five months old Abigail barely even cared about the environment around her. She could care less about toys or food or anything really. But to see where she is today, even from where she was a year ago is amazing. She loves her toys and gets so excited when her therapists brings out her big bag of them now. She is ‘talking’ up a storm and is wiggling everywhere. Her head circumference is in the 94 percent tile (her weight is only in the 10th) and we always joke about her huge head. But maybe it is just holding all those smart brains up there. I love watching her learn and I cannot wait to teach her more!

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Where are the Answers?

One day we were driving in the car together before Abigail was even a thought and Jordan played a little song for me by *NSYNC. Maybe you have heard it, “God must have spent a little more time on you.” The chorus goes a little something like this, “When I look into your eyes I know that it’s true, God must have spent A little more time On you.” It’s a classic love song, and I hated it. I felt like it was just saying you needed so much extra help that God had to take extra time fixing you to be right. I know that is not how you are supposed to take it, but that is what I heard. We still laugh when we hear that song and we will sarcastically say, “yep, God spent some extra time on you.” Then we had a lovely baby come along and I can definitely say that God put some work into making her!

We have been to about seven different specialists, not including her therapists and regular pediatrician. It goes without saying that every single doctor has been puzzled by Abigail. She is an odd bird to say the least. Her tests results never come out the way the doctor plans. Her results often do not match what she can do physically. We have done many tests and procedures in this short two years and every single one has come back normal with zero answers as to why Abigail is the way she is. She is a complete medical mystery so far.

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Our medical mystery…at least she is cute!

Just this week we received details about her genetic testing we have been waiting on for six months now. Six months is a long time to wait on a test that could literally change everything.  Everything is pending on this test. Answers as to why Abigail is the way she is, what our next steps will be, what her future will hold, and finding out about our next steps as a family. This was a BIG test! And in about five minutes of being on the phone all our hopes were shot. You say you will not get your hopes up. We knew this test could be as normal as the other test. We knew it might not give us the answers we were counting on, but you cannot help but to get your hopes up a little bit.

The nurse on the other end of the line said what we have always heard, “basically, the results show that all Abigail’s genes and chromosomes are normal. She does not have any misplaced or missing, so that’s unfortunately fortunate.” We have been fortunate that she has no major chromosomal abnormalities, but part of you wishes there was one thing wrong so you could have an answer. We are very unfortunately fortunate a lot. Part of us wants to cheer because our baby is healthy, and the other part of us wants to beat our heads against a wall because this constant testing process will never end. Between scheduling appointments that are months away because the doctors are so booked up, and tests that take months to complete we feel like we will never have the answers we seek.

What makes Abigail the way she is? No one can tell us. No one can say why she is so social and yet she cannot talk. No one can say why our two year old, who has been working on sitting for 18 months now still lacks the core strength to sit on her own. No one can tell us why her legs refuse to hold her up. No one has any answers and it is frustrating. But for now we are doing what we can. Even with a diagnoses we would do exactly what we are doing by going to therapy and receiving all the help we can for her. But it is that one question that plagues us – why? Why did God spend a little more time on Abigail, making her so complex? Why is it our child who will have to work harder in everything she does in life? Why?

I cannot answer these questions. I ponder them sometimes as I go throughout my day. When people ask us what is wrong with Abigail I try to explain to the best of my ability what I do know, but there is an awful lot I do not know. But I do know that God made her. He may have spent some time crafting her uniquely, but His thumbprints are all over her. And God made her with purpose. He made her in love. He made her with grace and mercy, and He loves Abigail more than I do plus a million times more. While I do not have all the answers, I know we are not alone as we journey through this. We have a Leader who guides us through. Yes, the way is often dark and very lonely but we are not alone. And for that I am thankful. I am thankful God spent a little more time on Abigail. She is perfect in every way and I would not trade her for the world. She may never talk or walk or even dress herself, but she is my sunshine and my little blessing. I only pray one day as I look back over our journey I will see the fingerprints of God in every step of this long path.

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Our Journey

When we first find out we were pregnant I was very apprehensive. I was worried about being pregnant. I was very, very worried about labor and delivery. I do not handle pain very well. And I was worried about how to be a mom. I had never been around babies and toddlers, so I had no clue how to change a diaper or even give a baby a bottle.  However, I survived being pregnant even though by about week twelve I was ready for the Lord to take me. I was so weak from throwing up and not eating for about ten weeks, I figured I would die any day. But that blessed second trimester came and pregnancy became a blessing as we watched our little baby grow inside me. I somehow survived labor after pushing for three and a half hours and being one push away from a C-section. I was exhausted!! But thank you to modern medicine I experienced zero pain. Praise the Lord!!!

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Our little newborn.

Then I was holding a brand spanking new baby. I had no clue what to do, but I knew our lives had changed forever. I learned to breastfeed and change a diaper in the hospital. We had our first scare when Abigail was just hours old. The night nurse discovered sores all over her body. But no one could tell us what they were from. At a day old Abigail was already giving samples and blood for testing, but nothing came of it, and they actually trusted us to take this little one home. Since Jordan and I had no idea what newborns were like we just figured Abigail was normal. She was eating and gaining weight. She slept well and smiled around three days old at her daddy, of course. She even flipped herself over from her stomach to her back a couple times her first week home. We figured she would be a wonder baby. Abigail was a great baby and always has been. She ate and slept like a champ and rarely, if ever, cried. I still do not know what Abigail’s cry sounds like because we never hear it.

We went to her two-month check up and she was gaining weight perfectly. That is all I was concerned with since I was breastfeeding. The pediatrician did her check up and said she looked perfect except for her vision. We had not even noticed because we just figured all newborns had bad vision and weird focusing issues. Abigail looked up for her first 10-12 months of life. You could barely see her pupils she looked up so much. She never focused or tracked anything. This led us to Atlanta to an appointment with a pediatric ophthalmologist. The doctor told us that her eyes looked perfect but he was concerned that there was maybe an issue with her connection between her eyes and her brain, so he scheduled us to have an MRI when she was six months old. Jordan and I were new and naïve at this process at this point, so we were worried our little baby was blind. I even remember researching everything I could find about babies who were born blind. Best-case scenario we figured she would be that baby with little goggles, and those babies are adorable so we secretly were kind of excited about getting baby goggles.

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Looking back on her baby pictures I do not know how we did not see it. But this is her looking up, as she always did. This is what concerned the doctors.

However, in the meantime we went back for our four-month check up, and our pediatrician was again happy with her growth but there was another issue. She had very low muscle tone. At four months her head control was still similar to a newborn’s. Abigail did not gain full head control until recently. But she was diagnosed with hypertonia, or as they call it ‘floppy baby syndrome.’ So we found ourselves going to a neurologist to do more tests. The neurologist was puzzled by Abigail’s vision as well. But they wanted to do blood work to determine the cause of her hypertonia, called a hypertonia panel. We did multiple rounds of blood work to determine things like her vitamin levels. We did a few urine tests, and urine tests for a baby are no fun and gross! We also did an EEG to test for seizures. All these tests came out clear. Which is a praise, but we realized then that this might be a long journey. Our days of researching everything were done. I knew all we could do was wait for something to come through with an answer.

Thankfully, at this point of our journey we started occupational and physical therapy. Abigail was about five months old, and she could not do much of anything. She barely could sit up with support. She rarely played with toys or noticed anything in her environment. She could not focus or track anything with those crazy eyes. And she had zero protective instincts. If you went to ‘drop’ Abigail she never reacted or got scared. To remember all that, and then to see her today is truly a miracle. Therapy has been amazing for her!!

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Her first time in her Bumbo chair. She could barely sit in it for a minute or two without falling over to one side or another. Now we use this seat every day and her legs are so much longer!

The day for the MRI came, and we made our three hour trip to Children’s early in the morning. Abigail had to go on a fast and could not eat that morning. It was a long morning with a tired, hungry baby, but we made it. They took us into our room to put Abigail under so she could go do her test. It was hard for them to find her tiny vein to put her IV in, and I had to step out of the room. My baby who never cries was screaming and I could not handle it. Then they got her ready to be out under. They put the medicine in her IV and within a minute she was out. It was one of the hardest things we had to watch. They rolled her out and I remember Jordan and I crying in each others’ arms. It was a long day for us all but we all survived, and made it home safe and sound. Two days later they called with the results, saying nothing was wrong. This would become a normal for us.

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In her precious little hospital gown getting ready to go back for her MRI. December 2015, seven months old

Our one neurologist gave up on us saying they just were not sure what other tests to do for Abigail. They referred us to another neurologist at Children’s. So back to Children’s we went. The doctor at Children’s wanted us to do an EMG test to check her muscle function. It was the craziest test we have done. Jordan and I were in the room with the doctor, and Abigail was laying on the hospital bed. To do the test the doctor had to stick little needles in Abigail’s muscles and send shocks into her muscles to minister her reactions. The doctor was on one side placing the needles and turning on the machine. I was on the bed holding the probes in place and Jordan was on the other side trying to hold Abigail down. It was like playing twister with all three of our hands on every inch of Abigail, and if someone walked in it would have been a sight. But that test came back normal too. Her muscles worked perfectly!

We have gone to an orthopedic doctor recently and you can read our story about that appointment here. But again Abigail’s bone structure was great! The last test we are waiting for is her genetic test. We did her blood work for it back in November. They said the results could take up to six months to come in and it has been five, so maybe we will hear from them soon. We do not have our hopes hinging on this test though because the nature of genetics testing is that they don not always give any answers. It is only a 20% chance they will find anything, and if they do it will not really change anything that we are already doing.

It has been a long two-year journey for us, with lots of new experiences and lessons in patience and faith. We obviously have no answers as to why Abigail is the way she is. But we have lots of answers as to things she does not have. She is healthy and happy. She is a joy to be around and we are spoiled!! Everyone always asks us what is wrong with Abigail when we say she is behind or has special needs. We just do not have an answer, but even without a diagnoses that does not mean that we have no hope. A diagnoses will just put a name on what Abigail has, but it will not solve any thing. We will still continue to do all three therapies, and attend our doctor appointments. Yes, a diagnoses will help with getting grants and other help as time progresses, but Abigail is not defined by what is wrong with her. She is who she is because of what she can do, and her bubbly little personality God has given her.

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I miss her gummy smile!

I wrote a blog about being In the Midst of the Unknown, and we are still there today. The unknown is not a fun place to be. It feels as if we are walking a path to absolutely no where, but the view around us right now is good! While we do not know what tomorrow holds, we know that right now God has us here on this journey. It is tough in its own ways. We do not know what Abigail’s quality of life will be, or even what she is capable of. She has the potential to regress any day, and that scares me more than anything. She could be our child who never leaves home. She could be in a wheelchair in the next year or so. We simply do not know. It is the not knowing that is the hardest. I want to make plans. I want to grow our family. I want to know what the next ten years will look like, but we cannot even predict the next ten weeks.

This journey of the unknown has stretched my faith and my patience to the maximum. I never planned to have a special needs baby, no one does. But here we are diving into the special needs community headfirst. It is a life I never thought about. But it is a life that is so rewarding, and blesses me everyday. My daughter is a blessing, and she is perfect in every way. Yes, she is a little different and highly unusual in so many ways, but she is a joy and a treasure. A lot of times she will do something and we will be like, “oh, that is so Abigail.” Like she just learned to blow kisses, but she does it all her way and it is precious. I think that will be the way her life is, doing things in her own unique way. But I am so glad God gave Abigail to us to raise and love on. It is been a journey loving this girl, but I would not change a moment of it!!

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Transformation in the Waiting

You wait in check out lines. You wait on big news to come. You wait on deadlines and release dates. You wait on your husband to get home. You wait on your baby to arrive and you wait on them to fall asleep every night. Waiting is just a part of life. Some people are good at waiting and others are very impatient. While you are waiting what are you learning? Life is not always about the destination at the end, but about the journey on the way there.

“I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!” Psalm 27:13-14

Jordan and I have been waiting for what seems like forever and we still have no clue what God is leading us towards. He has called us both into ministry, yet neither of us is anywhere close to that calling. When we first got married three years ago we were helping at a church with the youth group. We then moved to a part-time youth ministry positron, and then we moved here where we are not in any ministry. We have interviewed at countless churches and been told no more times than I’d like to admit. It’s tough knowing what your passionate about and what God has called you to, and yet not finding an open door to do that calling. I can only hope that God has something bigger out there than we could imagine, and this season is our time to prepare for what God has planned.

We are also still waiting on answers about Abigail. Why is she so far behind developmentally? Is there hope for her to talk and walk and be independent one day? This journey started when Abigail was two months old. We have waited on many different doctors to do many different tests. We have waited for MRI, EMG, EEG, and blood work results. All these point to the same answer – that Abigail is completely ‘normal’ on paper. So we wait. We wait for her genetics screen to come back. We wait for answers. We wait for her to determine if she is ready to advance or not.

We are living in a time of waiting. Waiting is not fun. We want answers as to why God has led us here and what He wants us to do. We want answers about Abigail and hope that things will be okay. But for now God has led us here – to this community, to this job, and to this child. We are trying to serve where we are because for now this is where God has us.  And as long as God has us here I want to be intentional with every moment. So many days I get caught up on the to do list I forget there’s a bigger world out there than just my own. I’m not sure how long God will have us here. It could be for 60 years or for two, but while we are here God is molding us and growing us. I can see it in my own life and in Jordan’s. We are growing up and learning so many things about our community and ourselves. We need to be here. We need this time to mature. We need this time of waiting to mold us into vessels God can use.

“But now, O Lord, you are our Father; we are the clay, and you are our potter; we are all the work of your hand.” Isaiah 64:8

The Bible uses a lot of comparisons to pottery and a potter when it talks about God working on our hearts. I have a very special piece of pottery from when I worked at a camp one summer. It doesn’t seem like much of a pot from the outside, but our theme that year was about the Potter and the clay. During our worship night two leaders would sit on the stage and make a pot as worship music was played. It was beautiful picture that God is still working on you and me. As the girl made this particular pot it started to fall in the middle. She didn’t give up on it though. She just started reshaping it and now the line where it dropped gives this pot personality. That’s exactly what God does in our lives. When we mess up, when we choose what our flesh wants, when we fear and doubt His ways we feel like we are messed up and cannot be fixed. But our Potter takes his skilled hands and forms all our mistakes into beauty. He is a master Potter and what He designs is never wrong. So these times of waiting, while painful and long they may be, are necessary to make us into the vessels God needs to serve Him today. And to do that I have to stay moldable and in my Creators hands no matter how tough it may be. It hurts to be pressed and pounded into something new, but in the end I want to be a beautiful piece of pottery that my God is proud to display to the world around me.

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“Where do you want me to go?” That is what is written on my piece of pottery.