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!!

Our Connection

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I love this picture of us! Our hair is greasy, but those smiles are genuine. We had just recovered from being sick all week and I took Abigail outside to get some fresh air. That smile melted my heart, as it always does!

From the moment that seven pound bundle was placed on my chest I knew my life would never be the same. I was never one to dream about having kids. I never planned to get married really. But God had other plans for me when I met my blonde headed lover. I knew I would spend the rest of my life with this man about a month into dating him. And my man wanted kids. He was the dreamer of the family in that department. So a kid a got! And what a special addition she is to in our lives.

I had no clue what to do with this bundle. Abigail was born about 30 minutes before shift change so after the nurses had us all cleaned up they just left us. Jordan left me to go tell our family all the details and it was just me and Abs for a while in a room alone. I figured all the books said babies are hungry so we tried the whole eating thing and I had no clue what I was doing and literally no one to help me. I barely knew how to hold an hour old baby much less how to care for her needs. So while we had a few minutes alone we simply looked at one another, both trying to figure the other out.

I knew this baby would change my life. She would alter my dreams and my schedules. I still felt wholly unprepared to be a mom, but ready or not I was a mother and there was no turning back. Abigail was the easiest baby ever and for that I am thankful, and oh so very spoiled. Even as a newborn she rarely cried. I had no clue how to breastfeed, but she was a champ. I always say she did all the work, I was just there to hold her. She slept well even early on and she really wasn’t a cuddly baby. We would place her on the floor and do chores or cook dinner and she was as content as could be.

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Those fingers wrapped around mine…it’s a small connection but it means so much!!

When Abigail was about three months old we moved about 45 minutes away to be closer to my family. I helped part-time with my family’s business and my mom and grandma would often keep Abigail and just let me nurse her when she needed to be fed. This was our routine until my husband and I decided to move closer to his family and be nearer to a larger city with more job opportunities and opportunities for Abigail. We made our second move when Abigail was about 1.5 years old. It was then that I became a full-time mom.

Some people would argue that breastfeeding Abigail for a year is what connected us. And while it might have, I also believe if she had been given formula it wouldn’t have been any different. I truly believe our connection started when we made this move and I became the one person Abigail sees most often. I’m the one who wakes her up in the morning and puts her to bed at night. I take her to all her therapies and doctors. We go on errands and to the park. We play and exercise and do everything together.

This connection we have formed is deep and it is strong. When I’m in the room she wants me. She may hug others and laugh for a little bit, but she eventually tires of them and wants her mama. But lately I have noticed that we even reflect each other’s emotions. If I’m feeling sad or mad or upset I have realized Abigail’s isn’t herself. Just yesterday I was running a low fever and not feeling 100% and Abigail was fussy all day. There has been a few times where Abigail has choked very badly on food and I get scared so I end up scaring her and making the situation worse. Thankfully Daddy has always been there to calm us both down. But I have noticed this emotional connection we have lately, and it’s amazing to me that she can pick up on it.

I guess when you spend the amount of time together that Abigail and I do you are bound to learn the person. And Abigail know each other pretty well. Even though she lacks all forms of communication, I can usually figure out what she wants. She has her own way of communicating and I am thankful that we have such a bond that she trusts me to care for her in every way. I don’t know what her future holds, but discovering this deep connection with my daughter gives me confidence that we will be okay no matter if she can never walk or talk.

Just three short years ago I would have told you I would never be a mother, much less a stay at home mom. But now I am a mother to the sweetest girl in the world. And our mother/daughter bond is unbreakable! I want to be the best mother I can be for Abigail. I want you to know I love her and that I’ll always be there for her. And I pray this special bond we have formed continues, no matter what this life may hold for us!

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When Life is Hard

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Abigail has been wearing her glasses for about a week now.  She is as cute as a button in them, but they are not to help her see. Yes, they have a slight prescription for her far-sightedness but the glasses are mainly to try to help strengthen those eye muscles. Abigail’s eyes are actually what began this long, on-going process of finding what is going on with her. At two months her vision alerted the pediatrician something was not right, and we were sent to a pediatric ophthalmologist. For about her first year of life Abigail constantly looked up. Her eyes have fixed themselves, but she still gets cross eyed at times and her eyes are still shaky. Her eye muscles, as they are in every part of her body, are very weak. So the glasses are here to hopefully help that. We are supposed to wear them as much as possible. We normally get about six to eight hours a day in them. And honestly she does a lot better with them than I would ever imagine. When we first put them on on the mornings she does not like them and touches them repeatedly. But after the initial touching she really does not bother them, unless you leave her alone with them. Then they are off in a heartbeat. She knows the glasses are weird and she does not wear them unless we are around to watch her.

The glasses are new and I’m sure they are not the most comfortable things in the world. Her vision is adjusting to a new prescription and her unsteady eyes have to get used to seeing things completely different. Change is hard. It is hard for a young child and it is hard for a grown adult. As adults we learn to cope with change. It is the only sure thing out there, so we know our life will constantly be changing in some way or the other. Some people are better with change than others. I am one of those people who hate change with all my heart. I like order, routine and sameness. I literally could do the same thing everyday and be quite content. I understand that makes you world changers out there cringe to even read that last sentence, but that’s who I am.

This past year has had a lot of changes. Between moving, changing therapies, finding new doctors and new programs for Abigail, finding Jordan a new job, becoming a full- time mom, and trying to find a church home I am drained. That does not even include the little everyday routine shifts that naturally pop up with life and having small children. Life is crazy and I am starting to feel it. My body is tired, my head hurts and I am just worn out physically, emotionally, and spiritually.

As I watched Abigail touching her glasses this morning I could not help but be reminded I am just like her. Life bothers me sometimes. It is annoying and I want to throw in the towel and go hide in my bed all day and never see anyone. It would be a much easier life that way. But those glasses have to be worn. No matter the amount of times I have to get little smudgy fingerprints off them, or how many times Abigail pulls them off they have to go on and be worn. They are helping Abigail whether she wants them to or not. She does not understand, but I know she has to wear them for them to help her. And in my heart I know I have to continue to live life because every stress, every worry, every decision, every tear shed, and every change is making me stronger.

God is still working on me. He gave me this life to reflect His Son, and I cannot do that the way I am as a rotten, spoiled sinner. Life is shaping me to be more Christlike everyday. Is the process fun? No. I wish I could rip off all the burdens and struggles like Abigail does her glasses, but this is the life God has given me. Today it feels very heavy, but it is often because I try to carry my load all alone. I am stubborn and independent to my very core. But God made us to be dependent people relying fully on Him. And oh do I need Him today to carry my load, to pick me up, and to stand my feet on solid ground. So my prayer today is that if you, like me, feel like life is hard or even just annoying then may us seek God’s face and may we fully rely on God who can take every worry, fear, burden and tear and give us freedom and life more abundant then we ever thought possible. May you dear reader find this abundant life in Christ today!

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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 Simple Life

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We just went on a short trip to Chattanooga, Tennessee with my parents. It was just the three of us and them, but we had a great getaway. Nana and Poppa took Abigail swimming. We visited the park and rode the carousel, walked the foot bridge and got ice cream. Then we took a trip to the aquarium and the zoo. It was a quick, but full trip and we all had fun. But this trip, as going out to any place, always reminds me that my baby girl is not normal.

Abigail could care less about the fish and the animals. She was more interested in eating her food and hugging whoever was carrying her at the moment. She is a very social baby, and loves giving out those precious hugs. As much as Abigail has improved at noticing her environment and being aware of things around her, she still never even noticed that we were surrounded by new creatures and that we were in a new place. She had her family with her and that is all she needed. It is frustrating at times that we go places and she has no idea where we are, or what is going on around her, but then you see that little smile spread across her face and you realize that she is enjoying just being with us.

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At the zoo with Nana and Poppa!

So often I wish that we could do fun things with Abigail that she would enjoy. I wished while we were at the zoo to see her eyes light up as the birds and monkeys wandered up to the enclosure to see her. I wish she could stand up and run around so we would have to catch up to her. I wish she could communicate her excitement when that giant fish swam right by her hand. I want to be able to take her places like the local splash pad, and the children’s museums and things like that. I want to be able to cook with her and run around catching bubbles and drawing on the sidewalk. Oh I want these precious memories. My mama heart is often sad because I feel like Abigail is missing out on so much.

But then I see her smile as she gives me the biggest and best hug of my life. I see her excitement as I pull out her scooter so she can ride around the house. I watch her eyes light up when Daddy comes home from work. I hear her squeals of laughter when we take our daily stroller rides. And I watch her splash away as we float around the pool. No, the things we do might not be exciting in the world’s eyes. No, the activities Abigail enjoys may not be normal toddler activities. And no, we will win no award for an adventurous life. But our simple little life is good! We are happy and have a little girl who is so joyful, and for that I am thankful.

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That smile is a ray of sunshine!

Maybe one day we will be able to do these things with Abigail, but I am thankful for today. I am thankful for a little simple getaway with my parents. I am thankful for my simple days I spend with my little girl. I am thankful for her joy in the small things. I am thankful that I have these moments to treasure in my heart forever. And I am ever thankful for a little girl who is making her own path in this world.

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My Dependence

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Me trying to help her up, but Abigail is trying to sit up on her own.

As a parent, praise about your child is the best thing you can hear. There is just a sense of pride about your children at all times, and when someone else expresses just a pinch of what you feel everyday it is wonderful! Today it was Abigail’s therapists that bragged on her. These ladies have been working with Abigail for about 8 months now, so they have been with her for about half of her life. They knew the 7 month old baby girl I brought in that could not even lift her own head and could barely even look at toys much less play with any of them. But today, therapy was a different story. Today Abigail sat on her little play bench and picked up toys and dropped them in a bucket. Today she loved reaching for bubbles and rattles that the therapist put in front of her. Today she even stood on her own two feet and was somewhat happy about it. Today she was amazing!

Abigail is growing up. She is still dependent on us for nearly everything from moving around, to eating, to caring for all the necessities of life. But for being such a dependent little oddler, she sure is stubborn (she gets that from her daddy, of course). As dependent as she is, she is the most independent little soul you will ever meet. She wants to sit up on her own so bad, and will not accept help until you literally start pulling her up yourself. She is not able to help herself in any way, and yet she will not accept the help a lot of times.  She has developed her own way of telling you she does not like what you are doing whether you don’t feed her fast enough or you make her exercise too long.

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Are we not the same way with God? I know I am. I am totally dependent on God for every breath, every dollar, and every bite of food. Yet, just like Abigail, I fight against Him and try to do it all on my own. Surrender to the one true King would be the best way, but it is not the easiest way. At least we make it a lot harder than it should be. I still cannot sing the words to the hymn, “I Surrender All” because so often I do not surrender much of anything. I want to hold on so tightly to all I have and all my goals, and dreams, and ideas. God is patiently saying, “Give them to me child. I will care for you. I love you. In me you can find all you ever want and need.” Yet, I strive for independence. When will I truly surrender all, and realize that God’s way is the best way? God’s way is the right way? And God’s way is actually the easiest way? When will I become fully dependent on God?

I am a completely dependent soul trying to be fiercely independent with my life. And God loves me so much He simply lets me. In a book I read once by Jeanette Oke, it compared God to a parent of a toddler. The parent would watch the toddler learn to walk and see the child starting to fall, but they would not help them. They child would tumble and fall to the ground and then the parent would help the child up to start the process over. When asked why the parent didn’t just step in before the child fell, the parent simply said, ‘if I didn’t let him fall He would never learn that I will be there to help him after.’ And that is how God is. He is always there. He knows if we are about to fall, but we must learn that we are solely dependent on Him. And if we were to fall, He is there to catch us every time!

As much as I love to hear praises about Abigail, I think God loves to hear His praises about Himself and His children. And just like with children, we all have baby steps to take to become the spiritually adults God has called us to become. But it takes laying it all down at His feet and saying ‘Thy will be done.’ It is a daily battle between the flesh and our hearts to say, ‘Here I am God. Use me and let me be all yours.’ May we die out to ourselves and take up our cross to live a life that is unashamedly all His, dependent on His every word.

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Help my Unbelief

“Sleep like a baby” is such a great term to use because it is so true. When babies sleep they really sleep. I remember Abigail’s first Easter we all woke up early to make it to the church’s Sunrise service. Abigail seemed great waking up a few hours early, but by the time the Sunday service started she was gone. She knocked out about the time the choir started their first song. I am pretty sure I could have flung her any way I wanted and she would be asleep still. Jordan and I almost went into hysterics trying not to laugh out loud at her in the middle of service. Abigail has always been a great sleeper, and even as a toddler that is no exception. She sleeps around ten hours every night and then takes a two hour nap in the afternoon. Usually right around the two-hour mark she begins to wake up and I go and get her out of the crib. Today, she was snoring away when I went to check on her. I said, “Good morning, Abigail,” thinking that might wake her up. Nope. This is the picture I took then. A little girl sleeping away just like a baby. I guess she was a little more tired today.

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Just call her sleeping beauty!

But she makes me jealous. Abigail sleeps so soundly. I toss and turn all night long worrying over to do lists and things that have gone on that day. My thoughts are everywhere, but usually lean to the negative side. “I won’t ever finish this project.” “I cannot do this anymore.” “I am worried about how to go about this thing.” “Why didn’t I say this to so and so today?” The end of the day worries and regrets wash over me as I lay in my nice cozy bed. Why do we do that? Why do we hash out every little detail and let it consume our thoughts. It takes away valuable time we could be doing something so much better with. Where is our trust and faith?

That is why babies (and my husband) sleep so soundly I believe. They do not worry about things. I get so frustrated at Jordan because he does not let the small things bother him, and he can compartmentalize all his problems. He always says that he will worry about it tomorrow, and then he lays his head on his pillow and drifts off within minutes. Not me. Long after he goes asleep I am laying there, tossing and turning wondering about everything and anything.

But I realized today that Abigail has no worries because she knows everything will be provided for her. She has never been hungry or in need ever so she does not know how to go without. She has no need because every need is met. She has complete and utter trust in me, Jordan and her other family to take care of her and give her whatever she may need.

I want that absolute trust in my Heavenly Father. I want to know that I know that every need will be met in Him, so there is no need to worry about the future. I do not have this trust. I lack faith. I worry about simple things that after a week will not matter. But I want to keep growing, keep gaining this faith in God.

One of my favorite verses is when the demon-possessed boy’s father tells Jesus, “I believe, but help me in my unbelief.” That’s me. I know in my heart God is good and He will bring us through, but in my head it does not make sense how. I think it would be easier to rely on myself to see me through. But may God help me in my unbelief. May I have such child like faith as my Abigail has in me. May I know God will provide. He loves us too much not to. Oh that I may rest in His love and His provision!

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