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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About Me

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For those who need to see hope in this world.

For those who want encouragement in parenting.

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

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

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

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

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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Encouragement for my Soul

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I love storms! I like to go out to our screen porch and listen to the rain coming down. I love watching storms roll in and lightning coming down. The thunder is loud at times, but it amazing that a storm has so much power and strength. It is amazing to see God’s handiwork even in the midst of something that is not always pleasant for a lot of people. It has been raining a lot this summer, and I love it. I remember last summer we never even got a drop of rain. We were in a drought and the land was suffering without the needed supply of water.

So often my soul is like the rain. I have had times in my life where my soul is refreshed continually with the rains of grace, newness, and growth in Christ. I have also had times of drought in my soul when my life was filled with doubts and worries. I would much rather live in those times of constant rain and refreshment any day. However, in those times of drought I am desperate to seek to Lord’s face and I know seasons of grace like rain will shower upon me once again.

I am reading 1 Kings in my quiet times, and I am in chapter 17 where the prophet Elijah is introduced. In verse one Elijah prophesies a time of drought in Israel. Drought and rain is a common theme in the Bible, as it is in life. But I love chapter 19. Elijah has prophesied the drought, a widow has taken care of him with her never-ending supply of bread, and he has seen God work miracle after miracle. Despite all that has happened, Elijah has run off to hide in a cave and die. He feels as if he is all alone, and the pressure to be God’s prophet is too much. However, at the end of verse 9 God comes to Elijah and asks, “What are you doing here, Elijah.” God tries to get his attention, and even calls him by name. God has to ask this question a second time and Elijah gives the same response. He still feels alone even with God speaking directly to him. So God sends refreshing rains into his heart. God tells him in verses 16-18 that he is not alone. God has someone perfect to take over for Elijah and he himself has saved a remnant of Israel. Elijah was never alone, but he had to be reassured that God was still for him.

I need reassurance a lot. Jordan hates this because so often I will ask him questions I already know the answers to. I just need to hear Jordan tell me those things again and again. So often the fear of being unloved, unwanted, or useless creep up into my mind and I need to be reassured that none of these things are true. Every person desires to be loved, cared for, and needed for a purpose. But as much as Jordan tells me these things, there is only one place I can find true assurance and that is in Jesus Christ. He loves me like no other person can. He gave everything to gain me, to call me his own, and he will not ever quit loving me. He cares for me and chose me to call his own. And in him I find my purpose and calling in life. Yes, I am a wife. Yes, I am a mom. Yes, I wear many hats, but my number one calling is a follower of God, a daughter of the King.

Does life get lonely sometimes? Yes. Do I need extra encouragement sometimes? Yes. Are there times I feel like my soul is thirsty for God’s grace and love? Yes. But I stand on the promises that God reveals in His Word. Just like he told Elijah and reassured him in his doubts, God reassures me every day that I am loved, cared for, and I have a purpose that can only be fulfilled through Him. That question He asked Elijah penetrates deep within my heart, “What are you doing here, Heather?” All I can say is that I am surrendering my life to God, and giving Him all I have.

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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!

Clinging

“To grip tightly, to hold as if glued firmly,” that’s how the dictionary defines clinging. I have experienced a lot of clinging this week. I helped with the 13-18 month olds at Vacation Bible School this week. They are precious, every single one of them. But since I was there all morning working with those little ones, I was away from my daughter every morning. The little guys would cling to me as the morning wore on and they become tired. They wanted their own mommies, but in the mean time I had to do for them. Then I would come home and my sweetie would go crazy trying to get to me in her own way. I would pick her up and she would desperately cling to me, pleading with me not to leave her again.

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All those snuggles!!!

It makes me wonder what have I clanged to in my own life? What have I run to when I am hurt or tired or afraid? The things we cling to show where are heart really is because these are the things that we love most, the things we truly treasure. I personally have clung to my husband, to food, to worry, to writing, to busyness, and to television. It is in these things (and probably lots of other things) that I find comfort from the hardships and worries of life.

A man from my home church used to sing, “The Anchor Holds.” It is a beautiful song and so true. The chorus says, “The anchor holds though the ship’s been battered. The anchor holds though the sails are torn. I have fallen on my knees as I face the raging seas. The anchor holds in spite of the storm.” In the midst of life, worries, and hardships God is still there anchoring us to Him. He desires us to cling to Him. Just as Abigail would not let go of me when I have been away from her all morning, He wants us to run to Him and hold on tight.

As Father’s Day is this weekend, I cannot help but think about how my heavenly Father has loved me and watched over me all my life. I live a very tiny life, but it is blessed in so many ways. I am thankful that God is a Father who loves us despite ourselves. He loves us despite what we have done or how we look or even how we love Him in return. He loves us because He made us, and desires us to know Him and His own Son. I am so thankful to have a heavenly Father who holds us, who comforts us, and who gives us grace and mercy every single day when we deserve none of it.

When worries and troubles come, or when times of joy and celebrating arrive, I want to run to my Father and cling to Him alone. I want to be so close with God that I know His heart and can reflect His love to others. As Paul writes in 2 Corinthians, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” That is the God we serve, a God of all comfort who we can cling to tightly despite what we have gone through or what we have done. He desires us to come close to Him, and see whom He is. God loves you so much. My prayer is that this Father’s Day we all cling to the Father who has given us so much!

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Happy Father’s Day to all dads out there!!!

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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