Quality of Life

This saying was never part of my vocabulary before having Abigail. Honestly, I never thought about a persons quality of life. It never accrued to me as I lived in a very safe, innocent bubble that people out there sometimes don’t have a very good quality of life. But what is quality of life? Who determines that? According to the all wise Wikipedia quality of life is defined like this,
“Quality of life (QOL) is the general well-being of individuals and societies, outlining negative and positive features of life. It observes life satisfaction, including everything from physical health, family, education, employment, wealth, safety, security, freedom, religious beliefs, finance and the environment.[1] QOL has a wide range of contexts, including the fields of international development, healthcare, politics and employment.” Of course Wikipedia goes on to explain that QOL should not be confused with health related QOL which they define as, “an assessment of how the individual’s well-being may be affected over time by a diseasedisability or disorder.[1][2]
 
So all those big fancy definitions are just ways society measures who is well off and who needs help. Who is rich and who isn’t. Who will have a good life and who won’t. And we have worried about Abigail’s quality of life since we started finding out about all her issues. We have no idea if she will ever leave home and be an independent adult. We have no idea if she will ever walk or sit or talk. According to the world Abigail’s quality of life isn’t that great. But I recently started following this mom on Instagram. Her daughter has Down’s Syndrome, and she wrote something so beautiful as she posted a picture of her precious daughter with the biggest smile plastered on her face. “I hope you see how much quality of life my daughter has. She deserves a good life and so do all the people that don’t fit the world’s definition of perfect.”
 
It made me step back and think about what is quality of life? When I talk about it I think about how Abigail will be able to function on her own as an adult. I’m already thinking twenty years down the road in typical Heather fashion. But what about today? Today, does Abigail have a good quality of life? Abigail isn’t your typical three year old in many aspects. She can’t do a lot of things she should be able to do. But I would argue that she has a great quality of life! 
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Abigail’s two favorite toys right now. Batman from Daddy and her tray from her portable chair. She drags that tray all over the house!

 
Abigail is in great health. She is joyful all the time. She is beyond loved. She has no wants. She has no idea she is developmentally behind. She has a pretty good life. Right now her quality of life is perfect. But so often I forget to live in the moment. I get so caught up with what tomorrow might hold that I forget that right now my girl needs me to just meet her where she is. 
 
So often we let the world define things for us. I listen to the world when they say my daughter won’t have as good as a quality of life than others. I begin to question if we are capable of caring for her. I worry what will happen to her if something were to happen to us. I have worries about what the future holds. What if we have another child like Abigail or even worse off than Abigail. I forget that today we are blessed. We have everything Abigail needs to have an amazing quality of life. I forget that today she needs me just to be her mom and love her. I forget to listen to Truth and not the lies. I forget that God has brought us this far, and He will continue to give us our daily bread. I forget that God is bigger than any diagnosis, any worry or any fear. These fears won’t just magically go away, but they don’t have to conquer me. I pray I always remember that Abigail does have a good quality of life. She is well cared for.  And even if ten years if she isn’t ‘normal’ she still can have a good quality of life. She still has purpose and a reason for the way she is. 
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Mommie and me night when I painted her toes. I love my joyful little girl who is full of life!!!

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Sprinkles of Joy

I LOVE sprinkles. Confetti cake, sprinkles in my ice cream, and blondies packed full of colorful confectionaries are just some of my favorite sprinkle desserts. But honestly I’ve been known to simply fill bowls full of just sprinkles and eat it like cereal. All the colorful waxy goodness!! My friends one year at college gave me a jar full of sprinkles as a thank you and that jar has moved multiple times with me and still sits on my kitchen counter untouched. Sprinkles are just fun! They add a little fun and color to a dessert, and make it just a little better. You cannot look at a little kid with an ice cream cone topped with sprinkles and not see the epitome of childhood. Sprinkles bring joy.

Well Abigail is my little sprinkle. She adds color and joy to our life. Abigail has always been a happy baby, stubborn but happy! From the moment she was first born she rarely cried. She let out one little wail as the doctor birthed her and then she just looked around taking us all in. Our first few weeks we had no idea what to expect, but we had the quietest baby ever. She might have gotten a little fussy when she was hungry but she was easily settled. Abigail continued this trend and is still the same way today. If she gets a little fussy she is easily calmed.

One of the first days we brought Abigail home from the hospital she gave her daddy her first ever smile and has been smiling ever since. What makes Abigail happy?? A familiar face, sometimes a stranger’s face if she happens to like him or her (I have yet to figure out Abigail’s reasoning behind liking some people and not others), her favorite foods, getting into trouble (did I mention she is stubborn?), being tickled, seeking thrills, Daddy coming home, people laughing, being cheered and applauded, the list is endless and things that make her laugh today won’t tomorrow. We always say she’s a mess because she is!

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But that smile melts every heart. Abigail is well-loved (some would call it spoiled but in our house she is well-loved). She is an attention hog and will let you know if you aren’t paying her the attention she deserves. It’s because she literally is always the center of attention. No matter where we go people notice Abigail. It’s not uncommon for strangers next to us in restaurants or in stores to stop and talk to Abigail. They always leave with a smile on their face. I don’t know if it’s the hair, the glasses, or the grin. But everyone loves her and tells us how beautiful she is or how happy she seems. Abigail loves the attention and she is good at turning on the charm! Our therapists love her and dote on her too. How they get any work done is beyond me. She has a fan club at several places of business because her family shares all Abigail’s pictures and videos with their fellow workers. I jokingly tell Jordan that Abigail may soon become the most famous baby in Cobb county one day. It makes my mama heart proud that we have such a wonderful, happy baby that people just love. And I’m thankful she is easy baby to love.

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Abigail has a lot of good qualities. She is bright, joyful, smart. She is empathic, forgiving, and loving, but my favorite thing about my baby girl is that she brings joy and a smile to all people. I know when I am stressed and feeling lonely or discouraged a little snuggling with my Abs can make me feel like the world will be okay again. She is truly our little ray of sunshine and she can make you smile when your day is gray. I am glad she is here to sprinkle some sunshine on our life.

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Now I’m going to shamelessly plug the birthday project I’m working on for Abigail. If she has added any joy to your life, or even if you just want to add some joy to hers I’m asking for your help!! She is turning three next month, and I want to make a special video for her. I want the video to be full of faces and people who love Abigail!! That’s you! I want her to know how many people she has impacted in just three years! If you feel led and want to help make this special gift all I’m asking is that you record a short little clip of you talking to Abigail. I’m thinking 30 seconds a person maximum. Just get your phone out and take a video saying “hey” to Abigail and telling her your name, and then add a message of encouragement or something to make her smile. It doesn’t have to be anything fancy or mushy – we will be watching this a lot I’m sure. You can either text me or email me your video, and then I will work on compiling them all together in a movie of sorts for Abigail to watch on her third birthday. Anyone can send a clip in, just let me know if you need my phone number or email and I can private message it to you. I know it’s intimidating to take a video of yourself, but I think Abigail will love it and I appreciate anyone who would be willing to help us! Let’s sprinkle Abigail with love!

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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 Sunshine

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I love this time of year! Everything is blooming and waking up from its winter slumber. Nature is just beautiful, and even though my allergies are at an all time worse, I love driving and seeing all the beautiful scenery. But the sunshine as it kisses my skin is my favorite. I am up early enough to see the first rays of light touch the earth and brighten it as the sun rises. I love the feeling and warmth of the rays and knowing no matter what that the sun will come up and be there to welcome the day.

The sun brightens everything and shares its light and warmth. Abigail is my sunshine. She brightens everyone’s day that she meets and she never meets a stranger. She loves “waving’ at people, which is really her reaching out to touch them. Faces are her thing. If she could play with your face and hair all day she would be the happiest baby! In just the first five minutes of meeting Abigail, she reaches out for your face and hair and smiles her perfect smile. Abigail is simply a joy to be around, and I don’t think I am saying that just because I am her mom. She smiles and laughs at people while we are in the check out line. Her therapists love her and say she makes their days better. And friends and family always tell us she’s wonderful. People are just taken with her because she is such a welcoming little one.

When I think of the way Abigail brings joy to people, the way she just makes people smile with her beauty and joy, it brings hope into my life. Maybe this is exactly who Abigail is meant to be. A little blonde headed ball of joy who is a little odd compared to others. A person who stands out in the crowd. Until you meet Abigail yourself you cannot fully grasp her personality. I cannot put it into words correctly, but this child can change the atmosphere in a room instantly. Even as tiny as she is Abigail makes a big impact in a room of people and I love that about her. She brings life, and joy and hope to others, and she is not shy to have all attention on her. She does not realize she is missing out on so much. She does not want things other toddlers want. She is content to play with your face other than a new toy. She just wants to be with you more than anything in the world. In the arms of a person who adores her she works her magic and you cannot help but catch on with her contagious smile and adorable giggle.

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Our precious Spring pictures from last year.      Happy Spring y’all!

Abigail Paige is my sunshine. All children have an innocence about them that is perfect, and their joy in the smallest things lights up this world. That is what Abigail does for me; she is my bright light in this dark, confusing world. She warms up my heart and allows me to love freely. She helps me see special needs in a whole new light, and she is teaching me she does have purpose in this world. Abigail can be a world changer with just her smile. And she is by lighting up lives with her tiny rays of joy everyday!! Oh I hope that those sweet rays continue to shine for a long, long time.

My Pint-Sized Teacher

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For years my favorite Bible verse was Proverbs 15:15, “All the days of the oppressed are wretched, but the cheerful heart has a continual feast.” This verse came to mind today as I was watching Abigail play. As I get ready in the mornings I put her on the couch, surrounded by toys, and she picks them up and places them in new piles. It is one of my favorite parts of our day. Abigail is often in her own world. She is often not aware of her environment, so to see her play with the toys around her in her own simple way is wonderful!

But that last line of the verse states, “…the cheerful heart has a continual feast.” I think that is a perfect description of our little girl. Abigail has the most cheerful heart you will find. Her smile lights up the room, and her giggle makes me laugh every time. I pray every night that her joyous spirit stays with her her whole life.

Joy is something this world lacks. We are surrounded by short-lived moments of happiness, but true soul reaching joy is not something you see. I see Abigail’s joyous spirit and I am thankful for a child’s innocence. She does not know she is different. Abigail does not worry about where her food is coming from, or what she will wear. She does not concern herself with deadlines and appointments. She could care less whether I was dressed in the latest fashions or in my dirty old sweats. Abigail does not judge people based on their outer appearance – if they talk to her she loves them. She is completely innocent to all things.

I desire a child’s innocent spirit. I desire joy. I desire faith. These are things I am learning from Abigail. I want a continual feast on God’s Word and His Truth, and I pray I find joy that can only come from knowing God in an intimate relationship with Him. Joy that cannot be taken away or downsized by life’s grievances. I want to laugh at the days ahead as the women in Proverbs 31 did. My overall goal this year is to press on as Paul said in Philippians 3:12-14. Press on to a renewed spirit. Press on to understanding and showing the love of God. Press on to joy unspeakable. And I am thankful to have a little helper to encourage me each and every day!