A Trip to Chili’s

How do you explain to a two-year-old about special needs? How do you explain to her that a little girl her own age cannot do the things you can do because her legs don’t work quite right? We came face to face with this situation this weekend, and I have been pondering these things myself.

My mother-in-law and her husband took Abigail and me out to dinner Saturday night just so we could get out of the house for a bit. We had been home for over two days and I was going a little stir crazy, so we all packed up and went to Chili’s down the road from our house. Well apparently everyone in town was stir crazy or didn’t want to cook (or couldn’t because they didn’t have power) because everyone was at Chili’s. So we sat with another family that came in before us in the waiting area for about 15 minutes. What a 15-minute wait that was!

The family consisted of a young mother, her two children (a little girl we soon discovered was only two months older than Abigail and her little brother who was about 6 months I am guessing), and the mother’s parents. They were a sweet family and we instantly started talking about the snow and road conditions and power outages. My mother-in-law was holding Abigail, and I was across from them in the other seat. They were sitting right beside the little girl and her mother.

The little girl and Abigail were having a staring contest. You see Abigail loves watching children. I think they fascinate her. The little girl finally got brave enough to ask Susan (my mother-in-law) what Abigail’s name was, so Susan told her and asked her name. She was the cutest little girl with light up rain galoshes on. Susan asked her how old she was and she said three, so the mother had to chime in and say she was only two. We couldn’t believe that she was Abigail’s age. Her mother said she was in the 97th percentile. Abigail is in the 10th, so you can only imagine what the size difference between them was. I explained to the adults that Abigail had special needs, so that might be one reason she seemed so tiny. Well the little girl couldn’t comprehend Abigail was two just like her. She kept saying she was only one, and Susan kept telling her, ‘no she’s two just like you.’

Well everything was going peachy until the little girl asked if Abigail could get down and play with her. Susan told the little girl that Abigail couldn’t leave her lap. Her mother tried to tell her that Abigail’s legs don’t work like hers and of course the why question kept coming. You could tell everyone was getting a little tense with not knowing what to say. Then the little girl asked if Abigail could sit beside her. Of course another round of ‘no’s’ and ‘why not’s’ commenced. So Susan finally told her she could play with her but Abigail would have to sit in her lap. I knew this was going to go poorly the moment that little girl stepped towards Abigail. Abigail loves looking at kids, but she does not like kids in her bubble much less touching her. Well that sweet little girl so lovingly held Abigail’s hands. It truly was the cutest thing, and I wished I could have taken a picture. But all the touching was way too much for Abigail.

I calmly got up from my seat anticipating Abigail’s freak out, and it came quickly. Her bottom lip quivered (a sure sign tears were coming). I scooped Abigail up, and the mother was like did my daughter do anything? “No, not a thing. She was the sweetest to Abigail, but Abigail cannot tolerate children. I am so sorry.” The little girl’s face crumbled. I told her she did nothing wrong and that Abigail was going to be okay. I had to walk away to calm Abigail down and when I got back the family had been seated. I told my mother-in-law everything was good. Abigail was back to laughing and dancing to the holiday music in no time. And when we left we stopped by the family’s table and wished them a goodnight. The little girl waved good-bye, so I knew she was okay too.

But goodness, what a situation! It really was not a big deal probably to anyone else, but those 10 minutes rocked my world. This is my life. No one knows how to react when you say special needs. I felt so awful for that little girl and her family. I know they had no idea what to say or do to explain Abigail. I was no help either. Looking back I should have taken Abigail and showed the girl how Abigail’s legs don’t work right. I should have held her and had a ‘dance’ party in my lap while the little girl stood beside us. There are 15 different things I could have done now looking back. But I sat there and watched this family meet a special needs little girl for the first time with no explanation.

I know it’s not a big deal. They probably won’t even remember us tomorrow, but I will never forget this. I know situations like this will come again. Children will ask questions, and I will have to answer to them and their families. I will have to explain why at two a little girl cannot walk or talk or even sit. I don’t know if I will have all the answers, but I hope to help and encourage as we go. Explaining special needs to a two-year-old is tough, but I hope that little girl stays as loving and sweet as she was that night. And I pray that one day Abigail will accept a sweet handhold from a fellow pier. That little girl’s hand in my child’s hand tonight meant the world to me. I know it was brief, but it shows bridges can be gapped and my daughter can be accepted. Such a simple thing, but such a huge Christmas blessing – a simple hand hold from a sweet little two-year-old girl at a Chili’s restaurant.

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A Musing Mother

It happened again. We were in the waiting room of our doctor’s office waiting for Abigail’s eyes to dilate so we could go back to see the doctor. Abigail was in my lap eating goldfish and watching all the other children running around. Me and her are good people watchers. One particular father was having issues keeping track of his son. The little boy kept wanting to run away and run straight out the door, so the dad kept running around after him only for the son to escape again. At one point the dad sat down across from us and tried to offer his son his own goldfish, to try to entice him to be still for a minute I am sure. The dad made a passing comment that made me cringe inside. He turned to his son and said, “Why can’t you be calm like that little girl?”

It is not the first time that comment has been made about Abigail. Obviously, she is calmer than a typical two-year-old. I mean she can’t move for goodness sake. And this was not our first rodeo in a crowded doctor’s office full of typical kids. So you can imagine when parents are chasing after running toddlers, and trying to keep their young children occupied in a boring office that seeing my child just sitting in my lap calmly chowing down on her snacks could easily make you jealous. I mean selfishly does not every parent want an Abigail who does not move and get into things and all the normal toddler things that toddlers do? A selfish parent wants an Abigail, but a parent with any bit of love for their child would never wish this on their child.

I wish I could tell that father that he really does not want his son to be calm like Abigail. I wish I had the time to explain our story, but a crowded doctor’s office is not the place. That dad wouldn’t care. If anything we would just get all the pity stares from everyone when I explained why Abigail was sitting in my lap and not running around. We receive enough pity stares already, so we do not need those either. My favorite response from strangers are the ones when they comment on how cute Abigail is, or how her pink glasses are adorable, or how blonde her hair is. I just want to stop and thank those lovely strangers for taking time to talk to us and to see my girl for who she is and not what she can’t do. I know these comments will decrease and the pity stares will increase as Abigail gets bigger and we actually have to use her new adaptive stroller or wheelchair more. Kids in wheelchairs are different and our society does not like different. Right now that only thing that sets Abigail apart from a typical toddler (at least from what a stranger can see) are her glasses and we get so many comments about those!

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Abigail’s newest wheels – the adaptive stroller. We haven’t used it a lot but I think when we do this thing will get some attention.

“Why can’t you be calm like her.” I won’t ever forget that small comment. I would not wish any parent to have a child with special needs. It is a whole different world (that I am only beginning to learn about) that comes with struggles, heartaches, and a dash of hope. While I am thankful for our journey and I could not be more blessed to be a mom of a special needs child, I want more than anything for Abigail to be normal. I want her to be able to be the independent child that she thinks she is. I want her to be able to walk and run and just be a kid. I want her to play pretend with her baby dolls and help my bake a cake. I want her to talk my ear off in the backseat and tell me what a cat says. I want her to learn her ABCs and sing made up songs to me before nap time. Oh these are just some smalls dreams I want. I know she is progressing daily, and for every baby step we just cannot believe it. As long as she is moving forward we know there is hope that one day she could do all these things.

What I would say for any parent of young children out there is that I know the days are long. I know you are tired and maybe even burnt out. I know toddlers are crazy! I know you have amazing days and then you have some horrible days. But please don’t take these days for granted. Be thankful for them being toddlers. Be thankful they are learning how to be little people and how this big world works. Protect them, love them and be patient with them. Soak in every silly song, every kiss for a boo-boo, and the sound of those little feet running towards you. They grow so fast and they need you more than ever right now. And if you happen to know a parent of a special needs child, or just see one out and about please do not offer the pity stare. Just say hey like you would any other mom. Tell them their child is beautiful and get your child to wave at them. You will make that parent’s day I assure you. All a special needs parent wants is the same thing you want – someone to stop and give us a smile and say hey I notice all you’re doing and you’re rocking it!

And to all mom’s that is what I leave you with – you are rocking it! Keep going moms! Drink your coffee, take a shower, do whatever you need to do for you and then love those babies with all your heart. We are in this together, and together we can do this thing called life. So find some mom friends and encourage some mom friends and love some mom friends this week. We need each other!

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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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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?

what matters

The Need for Community

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We have been living in our new home for almost five months now. I came here not knowing anyone except Jordan’s family. It was hard leaving behind my family and friends. Most days it is just Abigail and me because Jordan works such a random schedule. It gets lonely at times, and at other times I love it because I have found renewal for my weary soul in the quiet moments of life. But this past week I was reminded how important community is. Community as defined by Webster’s dictionary is, “a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals; a group of people living in the same place or having a particular characteristic in common.” God created us for fellowship and community, first with Himself and then with others. Community is where we find friendship and acceptance. It is a place to relate to one another and find encouragement. A community of like-minded people is a beautiful thing; it is a needed thing.

I had one of these times of connection and community this past week, and I will always treasure it in my heart. At the therapy center we attend each week I see the same families there week after week because we have therapy at the same time. All the parents wait in the waiting room while the children are in the back working with the therapists. Mostly parents keep to themselves and work on other things or stay on their phones the whole therapy hour. However, this past week was different. I am slowly starting to talk to some of the moms, who attend therapy with us, and last week they asked me about Abigail and I was able to share our story and hear theirs.

It was a blessing to hear these moms tell their own stories. They have been exactly where we are now, and it was encouraging to see these moms on the other side of the coin. They both have daughters with chromosomal disorders. One has a three-year old and the other has an eight-year old. Neither of their daughters will ever be able to be independent. Neither of their daughters will ever talk nor walk, at least not for long distances. They know these realities, and yet they are strong women who love their daughters fiercely. They are fighters and strong moms who even have other children to take care of besides their special needs child. They were an inspiration to this mama!

These ladies reached out to me, and helped me remember how much I needed community. And how much I am a part of this special needs community that is growing day by day. I am thankful these ladies and other special needs moms will be in my life for the foreseeable future as we continue therapy. I hope to have more conversations with them that might lead to friendship and an even deeper community. That is the thing about community – it grows and expands as you grow and expand. I have lived many chapters in my life and in each one I have specific friends and communities that I still carry in my heart. I am thankful for this new community I have being introduced to. I am thankful for others who reach out to me, and want to join me in community.