Our Simple Life

I thought I would share what a day in our lives look like. Of course each day changes and you cannot schedule a toddler every second, but on average this is what we do. I love my little buddy, and we are both going to miss each other when she goes to preschool next year. I think my mama’s heart is not going to be able to handle it. But I know Abigail needs to see more people than just me everyday, and I know that I need to be away from her too. But for now I treasure each day I have to spend with my little sidekick.

I wake up around 8 and wait for someone to start stirring. Abigail is normally up around 8:30 or 9. We are late raisers and I am okay with that. I know one day we will have to change our sleeping patterns but for now it works for us. Abigail is happy in the mornings, and we usually snuggle. She never pees at night so we have a very wet diaper when we go in morning. My mom has always said this will make it easier to potty train and I hope that is the case. We have a long ways to go before potty training can start, but maybe one day that will make it easier.

We go downstairs and fix breakfast for us both. She plays with her toys while I get everything together. I eat yogurt and granola. She eats a scrambled egg and cereal and maybe yogurt if she feels like it. She is usually pretty hungry, so she eats well. From there we snuggle and open the blinds in the front room. I have been trying to get her to learn to pull the cords to give her a job to do each morning. And then we get dressed and ready for the day. I lay her down in her bedroom with toys and music while I get ready and straighten up or put a load of laundry on. Then we get her dressed and that crazy blonde hair brushed the best we can.

Then depending on the day we try to go somewhere each morning. Mornings are Abigail’s best times. On Mondays we have physical therapy. On Tuesday’s is Music Class. On Wednesday’s is speech and occupational therapy. On Thursday’s she stays with grandma while I go to Bible Study. And Friday’s we normally have free so we go to the park or to the grocery store. One way or another we get out of the house for a bit, mostly for mama’s sanity. I like having somewhere to go each day.

We return for lunch and we usually watch TLC while we eat our sandwiches and fruit and goldfish. Then the afternoon fussiness begins. We try to have wiggle time and snuggle time. But at 2 it is nap time. We settle down with a good book or two and then it is off to Mommie and Daddy’s bed for a nap. We have to hold her down still so she does not fall of the bed, but it usually only takes her about 20-30 minutes to fall asleep. Some days I nap with her. Some days I use the hour and a half to clean or blog or just do nothing. It just depends on how motivated I am that day.

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I usually have to wake Abigail up because she would sleep the day away and never go to bed at night if we let her. She is out of it when she gets up. It takes her a good 20-30 minutes of snuggles to finally wake up. Those are some of my favorite minutes of the day. By then, if Daddy has been working all morning, he is home. So it is his turn with Abigail while I get dinner ready and the house straightened again.

We eat together at the table and Daddy normally gets her all fed while I clean up afterwards. She is the slowest little eater but she eats well! In the evenings we try to take a walk whether in the neighborhood or at the local outdoor mall 5 minutes from our house. We do some exercises and just are together as a family, watching TV, tickling, playing, and wiggling.

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Wrestling with Daddy before bath time.

Then before you know it it is bath time and snack time and snuggle time. Around 9:45 or 10 we head to bed. I know that is late but we honestly still are not close to going to sleep yet. This is why we sleep in. I hate the late bedtime but for now this is where we are. If anyone has suggestions about how to get a toddler to sleep faster please let me know! Her therapist and pediatrician have both said this may be a result of her finally gaining freedom and mobility. If you just learned to move you would want to wiggle all the time too. But we are trying to teach her that bedtime is bedtime, and give her tons of time to wiggle during the day. So, at 10 I read her a story or two and then lay down and hold her again. Bedtime takes longer to go to sleep. It normally takes between 45 minutes to an hour and a half. She is usually asleep by 11 or 11:30 and then it is my turn to sleep.

There is not anything exciting about our days. We like the simple life. Of course, days change and we do other things in between the usually stuff. Whether Grandma comes for a new adventure or we go to a doctors appointment that day. Or on days we miss therapy because our therapist cancel, we go to the store or just explore around town. Abigail is pretty chill, so it is easy to take her places. These next few months have lots of new adventures in store as fall festivals approach and then we have a big family wedding coming up. But all in all it is just the three of us living life with each other one day at a time. I love my simple life and I am glad I get to share it with my family!!

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Dealing with Doctors

I was a very healthy child growing up. My whole family is. We rarely go to the doctor for anything, and if we do it is our family doctor running his own tiny practice in our tiny town. Needless to say I had no idea about the medical field until Abigail came along. And I still only know one tiny piece of the whole puzzle.

We have seen at least 10 different doctors in different fields for one thing or another the last 2 years. We have seen multiple neurologists because our first one gave up on us, and sent us to one at Children’s. We have been to countless eye doctors who have told us everything under the sun. We have been to the geneticist, an othropedic doctor, and even an eyes, ears and throat doctor once to do a hearing test. I am an expert form filler outer!

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One of the early doctor’s appointments. See how she was looking up all the time!

There are two things that all these doctors have in common though. One is that they have all said in one way or another that Abigail is a puzzle. They say it differently, but it all means the same thing. They have no idea what is wrong with our child, and they have no idea what to do for her. She is a square peg in their round holes. Most children like her also have other ailments, so even though Abigail checks some boxes she does not check the ones they want her to. I am sure doctors are not excited to see us when they look at Abigail’s charts. And secondly, everything they have tested or looked at has come back normal. On paper Abigail looks like a typical two year old. But in real life she is anything but normal.

Right now we have a geneticist appointment in February, which we scheduled back in June because that is how awful it is to try to get appointments made. There are only a handful of pediatric doctors that serve in these areas, so getting into see them is a nightmare. Our neurologist does not quite know what to do so she is simply running all the tests we have already ran over again. Our eye doctor keeps giving us little fixes like patches and glasses to help Abigail’s vision, but our neurologist says it is not her eyes it is the connections in her brain giving us issues. But the eye doctor knows these things will help and if not there is always surgery.

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Our little pirate. Just one more thing this poor baby has to go through!

On top of all this and keeping up with all the appointments, we attend three separate therapy sessions each week and go to music class. It is a mess. I want the doctors to talk to each other. I want them to care about Abigail and actually read her chart before they enter the room. I want them to know we have already seen 10 doctors before them and each one tells us something different, yet none of them have given us a single answer as to what is wrong. I want them to see Abigail’s progress instead of a two year old who cannot sit, stand, walk or talk. I see a two year old who has conquered mountains instead of one who needs to be tested and documented like an animal.

Just today we saw a new eye doctor and he was explaining what he saw wrong with Abigail’s eyes. He asked me if I saw her vision as being off any. I simply looked at him and said, “Sir, I see a child who literally looked up at the ceiling her first year of life. She wasn’t interested in anything and today she tracks objects and looks into your eyes. That’s huge! So no, I don’t notice her eyes being a little crooked or shaking here or there occasionally.” His reply, “Well from what I see her eyes do seem to be a little off still.” Oh if he could only know from where we have come!

It has been a long journey, and we are only at the beginning of it. I know so many other parents who would tell me I have it easy or that they have been through worse. And I am thankful we do not have to see cardiologists or other doctors for Abigail’s health. I just pray we find a doctor along our journey who we love and who cares about where we have been and how far this little fighter of mine has come.

Second Round

We have not been through as much with Abigail as a typical special needs family would have been, medically speaking. Abigail is healthy and happy, and there is not a single thing wrong with her except she is behind developmentally. We have not had to go to the hospital with her. But in December 2015, when Abigail was just barely 7 months old, we went to Children’s hospital to get an MRI done. The doctors were concerned that the connections from the back of her brain were not functioning as they ought. Her vision was awful back then as she could only look up and not track objects.

I still remember that day well. Abigail had to fast, so we woke her up early to get one last feeding in thinking she may nap in the two plus hour trip to the hospital. Well she did not nap. We were in Atlanta traffic with a tired, hungry baby and two stressed out, worried parents. We arrived and somehow got directed through the parking deck and down to the radiology department with enough bags to spend four nights at the hospital (I tend to over prepare for things).

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Abigail getting ready to get her IV in. Yes, they give them tiny hospital robes to wear!

Abigail was still pretty happy for all she had already been through so that made us feel better. But then they came to put her IV in, and it quickly went downhill. Because she had not ate or drank her already tiny veins had shrunk even more and the experienced nurse tried and failed about three times before finding her vein. By the first poke, my drained nerves could not handle my crying infant. There was already too many people in the crowded room, so I just stepped outside before I yelled at the nurse and tried to pull her off my screaming child. I boo-hooed like a baby by myself in that hallway. I remember a sweet nurse walking by and handing me a tissue.

The nurses left the room and said we could tell her bye before they sedated her. By this time I was already ready to leave. But I put my big girl panties on and hugged Abigail goodbye, telling her it would all be okay. Jordan and I stood on either side of her as they put the sedation medicine in her IV. It took about 30 seconds for her to go under, and they wheeled her out saying they would not leave her side. We were left in an empty room, while our unconscious infant was wheeled into the screening room without us. Oh we both cried like babies!!

It took over an hour for them to do the test, so Jordan and I got out of there and went and had lunch to help us calm down. Then we came back and waited for them to bring her back. She came back on the gurney half asleep, but doing great. They let me pick her up and nurse her and I was the happiest mom to have my baby back in my arms. We soon left and returned home. The results came a few days later saying everything looked great and we had nothing to worry about.

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How they brought her back to us. It looks much worse than what it was, but she looked so small and pathetic as she was still under.

Then today our neurologist told us that she wants to schedule another MRI at Children’s within the next two months. She wants to see how Abigail’s brain is developing and make sure nothing new has shown up. But all I could think about is how awful that day almost two years ago was and I do not want to go back. We were naive then and did not realize how emotional the process would be, but now we know.

We know we could be going through a lot worse. We know Abigail will be fine. We know it is just general sedation and a quick MRI. We know the Children’s staff will be great with her. But we also know it will be a hard day. It will be a day full of tears for everyone. And we know we do not want to see a two year old experiencing two MRIs in her lifetime. But this is what is best for her, and the only way the doctor knows the proceed. So reluctantly we will take out tired, hungry toddler to radiology whenever the date is set and we will see if they can hopefully find us some much wanted answers! But even if this test yet again reveals nothing, we will be thankful for Abigail’s health, progress and that she is apart of our little family!!

Building a Community

What an adorable girl you have.

She is just beautiful.

What a happy girl.

Her smile is the cutest.

That hair!

These are just some comments we receive from strangers while we are out and about with Abigail. She is too cute for her own good. I tell Jordan all the time that I do not know how we made such a cutie. Her blonde hair, blue eyes, contagious smile, and now her little pink glasses make an adorable combination. You see, Abigail looks completely normal. Nobody with would think twice that she has a developmental delay. Often people are shocked, or they just do not understand, that she is not able to sit or stand on her own.

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Our beautiful girl!!

I guess most people consider special needs children to look or act a certain way. But special needs covers a wide variety of conditions from speech delays to the autism spectrum to severe cases of cerebral palsy. And that does not even cover the other thousands of syndromes and genetic disorders that are known today. People are so quick to judge the little boy in the wheelchair or the little girl with Down’s syndrome, but they do not realize that children like Abigail have some of the exact same issues.

I have to watch myself when we are out and about because I catch myself staring at families that have disabled or special needs children. Not in judgment, but simply because I can relate with them and I want to encourage them. But they take one look at Abigail and they would never guess that we were the same in any way. The other day we were in the check out line of Wal-Mart, and a mom and her two daughters got behind us. The one daughter was in a wheelchair, so I immediately wanted to talk to her and make a connection. Thankfully, she commented on how cute Abigail was and I was able to talk about how we just recently received her glasses and found my lead in to say, “Yes, we are alike!” Turns out her daughter’s and Abigail’s stories were quite similar in the beginning. Her daughter did not walk until she was four, she has no diagnoses, and they go to therapy too. It was wonderful to make that small connection, and I wish we could have kept talking, but it is hard to do that in a check out line.

I live for these connections with other special needs parents. They are people who can relate because we have all journeyed down similar paths. My passions are slowly being molded to start a special needs ministry for parents in some way. I have always wanted to be in ministry since God called me in 2010. I always figured I would be apart of a women’s ministry of some kind, but know I feel more and more led to special needs. It is where I am in life as a mother of a special needs child myself. And yes, while our children may all be experiencing their own struggles and triumphs, all special needs parents share a common bond. We are all struggling to find our way through emotions, bills, insurance companies, appointments, and still raising our kids to thrive in their environment. It is a lot, and we need each other. So my daughter may be the cutest thing in the world, and look like she has is all together but her mama needs those other parents to understand that I need them and we need each other. So today I am praying that God works in and through myself, my community, and that He can use me to bless other special needs parents in some way great or small.

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20 Facts about Our Family

I have been blogging for over a year now, and I thought it was time to write a little on the lighter side tonight. Here are some random facts about our family of three. Thanks for for your support and for reading along!!

1) Our last name always throws people off. I am forever spelling it for people over the phone. L-I-D as in David- H as in Henry. I had no clue how to say it when I met Jordan in college. I had to ask him. I always remembered it because as my husband Jordan would lead me. Jordan sometimes will tell people it’s spelled L-E-E-D. It’s a tough one for only being four letters. But we answer to anything, mostly we are the ‘Lids’ and that’s ok.

2) We rely a lot on our extended family. We are blessed to have two families that truly love and support us 100%. They help us out with Abigail by watching her, loving on her and providing for any and all needs she may have. They provide a roof for our head and often treat us to dinners or new clothes. I tell Jordan all the time how spoiled we are. But we are very thankful we have great families that love us and want to take care of us because so often we wouldn’t be able to do it alone.

3) We would love to own a dog. I think we would both lean to a lab of some kind. But the house we live in has no yard, and I couldn’t do that to any dog much less a bigger dog. But maybe one day because having a dog would be so fun and I think Abigail would grow to love him even if she would be quaking in fright at the beginning.

4) One of mine and Jordan’s dream anniversary spots is Washington DC. We truly are simply and nerds at heart. But we went on a trip to the capital just months after we were married with a group from our college and we loved it!! We would love to go
back one anniversary and explore on our own.

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5) I like to sleep in and recently Abigail’s schedule has changed so she sleeps in until 9 most mornings and as long as Abigail is sleeping in I am too. I know people say you should wake up before your kids and get things done or have me time, but I prefer pillow time.

6) I recently got a library card in our new county. I LOVE to read and this is a whole new world of books to read. I found I love historical fiction, and now I stay up late reading. Maybe that’s why I like to sleep in.

7) I secretly love trying to rock Abigail asleep. She has never been a cuddly baby. She hated being rocked and being placed in a carrier even as a new born. But now I try to keep her up later so I can rock her to sleep and hold her for just a minute before putting her in her crib.

8) Abigail is getting huge!! She is outgrowing her crib, her seats, and her clothes. She is heavy and I cannot carry her as long as I used to. She would be so tall if she would stand up. It’s hard to believe how big she has gotten.

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9) We eat the same thing almost everyday. It’s just easier because I l ow what I like and I know what Abigail likes. She loves fruit and carbs and so do I. I literally eat a whole box of Suddenly Salad all by myself at lunch. Yes, carbs are my friends. I’ve considered dieting many times, but you only live once and I love food!! I don’t think I’m disciplined enough to diet.

10) I have never been a runner. In college I tried to ‘run’ in the evenings. I have started the Couch to 5K about 4 times, and never finished. Running just isn’t my thing. But I love to walk. I like my walking buddy and we spend a lot of time walking in the park and in our neighborhood.

11) Speaking of walking – I usually walk so I can get miles and catch Pokémon on Pokémon Go. My husband got me hooked when the app first came out last year. And I haven’t looked back. I love playing!!! And the best part is that it’s like mine and Jordan’s thing to do. We have had many a date night going around and catching Pokémon. And it’s a nice family outing where we can get out and do something together. So call us nerds, but it’s one of my favorite things to do.

12) Jordan and I always try to spend time with just us everyday. It’s tough because he is on a weird work schedule. He works retail and his hours change from day to day and he always has different days off. I can never keep up with it. But we like to watch our tv shows, movies, play board games, and play minecraft. Yes, I did say monecraft. It’s another great game to play. Our land is called ‘The Loveshack.’ Jordan would kill me if he knew I told you all that, but I named it for us. I love spending time side by side building a fantasy world and killing zombies with him.

13) Sometimes I don’t do all Abigail’s exercises with her. Sometimes I forget. Sometimes I just want to snuggle with her. But our favorite thing to do is in the evening we lay down side by side and we just laugh and tickle and snuggle. It’s wonderful and always a highlight of my day!!

14) I’ve always wanted to be an elementary school librarian. In college God called me to ministry and I changed my major to Christian Studies. I then got married and we had Abigail. I now stay at home full-time with her. I know I am called to ministry and I am searching for what God would have me to do. But for now my ministry is to our daughter and the families we come in contact with everyday.

15) I love that my husband literally beams when people say Abigail looks like him. He eats it up!!! He is the best Daddy and he loves that girl so much.  His love for her makes me happy. Because I know she will need her daddy as she grows!

16) One of my dreams would be to adopt a special needs child. I don’t know if it will ever happen, but we are both open to adoption and I know children with special needs need to be loved too. Maybe one day my dream will be a reality but for now I will keep learning all I can about caring for special needs children.

17) My favorite room in the house has always been the bathroom. It might be a weird pick, but I take my showers at night at the very end of the day. It’s just my time to unwind and not have to worry about a single thing.

18) My favorite thing about being married is that I get to live with my best friend. I love that even after just 3.5 years of marriage we are pretty good at knowing what the other one is thinking and feeling. And we always think the same way about big decisions (or at least we have so far). Is our marriage perfect? Not by any means, but we know we are together no matter what and I am thankful to live life with my best friend!!

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19) Yes, we would love to have more children. People ask us that a lot. Of course, we are also scared to have more. We have no clue what Abigail’s quality of life will be and we are scared to have another child like Abigail or in even worse condition than she is. We have been told the chances of us having another child with special needs is slim to none, but obviously no one can guaranty anything. But maybe when the time is right, God will bless us with a second child!!

20) I love my family!! Family is very important to me. I think God designed families to honor Him and he used a family to bring salvation to the world. I am thankful my husband picked me five years ago. I am thankful we had our beautiful little girl ,and I can’t wait to see what God has in store for our family as we continue to grow in the years to come!!

 

What Matters

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My family matters to me, and it always will!

A fellow mom at therapy whose daughter is diagnosed with Angelman’s syndrome once said, “The things that used to matter just don’t anymore.” That one line in the midst of our conversation just stuck with me. “The things that used to matter just don’t anymore.” Of course I am not as far along in the process as she is because her daughter is going on eight years old and Abigail is only two but already in these two years I have seen differences in myself because of Abigail.

The biggest thing I have noticed is that I have found my voice. I have always been opinionated and stubborn but I am also very quiet and reserved, so while I have lots of opinions and comments I would never voice them. But with having Abigail (and being married for three years to a man who is also opinionated) has helped me step out of my bubble a lot! I have learned to have a voice. With a child who sees as many doctors, specialists and therapists as Abigail does you have to be adamant along the way about what your child does or does not need.

I have had many phone conversations while setting up appointments and confirming Abigail’s test results where I have to be firm with the person on the other end of the line. It can get so frustrating trying to connect so many doctors together, making one appointment after another, or dealing with insurance companies. Just this week I have been in the phone multiple times making phone calls to many people in the genetics lab trying to find out what is going on with Abigail’s testing. But the line I use so often is, ‘the squeaky wheel is the one that gets fixed.’ It is a headache and I hate being rude, but we have learned that if you do not keep on top of things you get lost in the system quickly. You have to make yourself known to get what you need done and I am learning to be braver and make sure we get what we need.

Things that used to matter just do not anymore. I see this is true as I know our life is different than most. I deal with things that should be simple but having a baby who does not move makes life more interesting sometimes. To go to the library just to drop off books and get new ones is a workout. We went the other day in the pouring rain (not sure what I was thinking). But I had to run around get the umbrella, get out the stroller and try to keep it dry all while getting Abigail out of her car seat. Then I had to buckle her into the stroller, grab the books and make a mad dash into the library all while trying to keep us all dry. It was a sight I am sure, but life for us. My favorite is when we go to a new doctor or we have a different nurse and they ask me to stand Abigail on the scale to get her weight. I just start nodding my head and say that will not work. They seem so confused, but thankfully right now we just use the baby scale. It is just the tiny things that make life a little different for us. We cannot do things the same ways a normal family with a toddler could.

It makes me wonder what things in life will not matter, or what will be our normal as Abigail grows and gets bigger. Will we be stared at from across the restaurant because of our daughter in her wheelchair, or the ten year old who cannot feed herself? What questions will people ask us as we are out and about with our family? What matters to me right now, and will those things matter five years from now? As a parent of a child with special needs you learn a new normal to life. Any other children we may have in the future will be brought into our normal. I want all my children to know what really matters in this world. It is not how popular you are, how much money sits in a bank, or how you compare to the people down the road. What matters, and what will always matter, is what is eternal. The things of this world will fade. But your relationship with God and how you choose to live for Him will be eternal. I want my children to be servants who love God and love people. I want them to have fun and be innocent as long as possible. I want them to respect others and find joy in the small things. Oh, there are so many dreams for my children, but I want them to understand no matter what our normal may be they are loved, not only by Mommy and Daddy, but by God, their Father. What things do you want to matter to your children as they grow older?

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The Game of Life

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Our family Cribbage board

We are a card playing family, and Cribbage has always been a favorite. I grew up playing Cribbage and now when I stay over at my parents’ house for a long weekend we always try to get a game or two in. If you do not know how to play Cribbage that’s okay. This post is not about that. Basically, all you need to understand is that those pegs pictured are what you count with. You obviously want to have the most points, and have your pegs in the lead. A lot of times though you get dealt not so great hands and your poor pegs lag further and further behind everyone else’s. In Cribbage you can get so far behind the winner you get skunked. It’s a very technical term. Basically, if you lose you don’t want to lose so bad you get skunked. See, it’s really a rather fun family game! And two fun facts about this particular Cribbage board: 1.) my brother made this by hand (pegs and all) for my mom’s birthday one year, so it’s a very special board. 2.) See those words my mom wrote on the board, “Heater’s Curve.” It is supposed to be my name not Heater. This is the particular spot on the board I always began to lose, no matter how far I was in the lead. It became the family joke that when I was approaching this curve they knew I was going to start losing, so Mom nicknamed it Heather’s Curve, or at least she thought she did. Yes, my own mother misspelled my name, so now it’s affectionately called, “Heater’s Curve.”

The game of Cribbage, and many games in fact, is just like life. Sometimes you get dealt great hands that make you feel good and help you win, and sometimes you get awful hands that do not move you ahead at all. You feel like you are stuck in quicksand of life, and you will never catch up to the people ahead of you. This is often how being a special needs parent feels like. Every time your child does something good or conquers a task you realize that your friend’s baby did that six months or two years ago. As other children progress around you, you feel as if you are chugging as you hard as can and still are not able to gain any ground.

I am so excited, and so is everyone else because Abigail loves to give hugs now! It is precious and makes you feel extra loved when she wraps those little arms so tightly around your neck. She is truly the best hugger! She is beginning to eat better and better and even attempting to eat on her own in small ways. She is rolling from side to side and trying to sit up and move so much more. There are signs of progress everywhere. But right when we are gaining so much progress, I took her to the eye doctor because we have seen some small concerns with her eyes twitching, not focusing, and going cross-eyed. Well it is a good thing I took her because her muscles in her eyes are very weak. While the eye itself is as healthy as can be, the muscles are not controlling her eyes properly. So, soon Abigail will begin wearing glasses to try to strengthen those muscles. She has four months in glasses, and then if there is no progress the next step is surgery.

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When we feel like we are gaining ground with negative genetic testing and physical progress, we are hit with this reality. Our little girl may be faced with eye surgery at the end of the year. Oh, we are praying these glasses are miracle glasses!! But in our two-year journey we have seen this over and over. We gain some ground and are reassured everything will be okay and we will overcome anything, and then we are told she has very low muscle tone, it might be a genetic problem, there are still no answers, or that surgery may be the only solution. The life of a special needs parent is one big rollercoaster of emotion, filled with excitement, worry, and the unknown.

Through it all though I am thankful that life is not just one big game. We are not pawns being pushed around a board. Through it all God has a purpose for each and every person. He knows what we are going through, and He has a beautiful plan unfolding everyday. Is it frustrating? YES. Is it lonely? YES. Is it what I would choose? No. But it is still a beautiful plan, and I trust that with all my heart. In the end, I am thankful for this plan, this path of life God has set us on. It is making me a better person, a more trusting person. The last two years has changed me, and giving me a whole new perspective on life. Do I want this for my little girl? Never in a million years, but this is the life God has blessed us with and we will take each day and be thankful for the gift it is. We have so much to be thankful for, and I will not ever forget that!

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Our happy little blessing!