Our Tummy Time Adventures

Oh tummy time! I am not here today to write about the benefits of tummy time, or put my two sense into the debate. I know doctors and therapists will say some things and moms will say others. Today is just our story with tummy time, and the progress Abigail has made in her two and a half years of life. I personally have a love/hate relationship with tummy time. It was a lot more hate in the beginning, but that was because Abigail hated it. But today she rocks tummy time like a champ. Actually, I don’t know if you can consider it tummy time anymore for her. It is more like her way of life now. So funny how time changes things!

Abigail has never been a cuddly baby. Even as a newborn we would put her on her little play mat on her back and leave her in the living room while we went to fix lunch or dinner for ourselves. She was just content to lie there and stare at her toys, so that’s what we did. But around a month old she flipped over from her back to her stomach on her own. She only did it a handful of times for that week, but we were so excited for her! Thankfully we have a video of it because no one would believe that knowing  Abigail’s journey now. But she did not start rolling and flipping over again until she was about 9 months old and even then it was sporadic at best. This past summer is when the rolling and flipping became a permanent part of our lives (Abigail had just turned two in May), and bedtime became a thing of the past.

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Abigail, 8 months – tummy time was quite a struggle even with our fancy equipment.

We began therapy with Abigail at five months. Of course, her therapists loved and encouraged tummy time. But at this point of Abigail’s life she had zero head control, so tummy time was a struggle. Abigail’s head would just bob uncontrollably until she just could not take it anymore and start crying. Tummy time might have lasted 2 minutes at a time. It was a rough time for poor Abigail. She hated it! She would much rather prefer being on her back or sitting on the couch. We tried everything from boppy pillows, tummy time pillows, toys to try to encourage her on her tummy, but she just was not having it. At this point Abigail was not interested in any toys or her environment really. She has always loved people, so we could make her laugh and giggle and that’s about all she liked to play with was other people.

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Abigail, 15 months – tummy time was not as much of a struggle but she still couldn’t lift her head up fully.

Finally, around a year old she had pretty stable head control so tummy time became a little better, but it still was not great. But she could more easily play with toys and tummy time became a little better. It was not until she learned she could have some mobility this past year thought that tummy time became Abigail’s favorite position! It all started with learning she could push on her scooter board.

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Do you think she liked her scooter??

Then she learned to push herself backwards, and it was only a matter of time that the army crawl was founded. Today, she practically lives on her tummy. After she eats breakfast until the time she goes to bed, she is on her tummy all day playing, moving, and exploring. It is the best way for her to play for now since she cannot sit up, and the only way she can get around. She loves being on her tummy. You would have no idea that two years ago tummy time was a taboo word in our house – that this little girl you see could not even keep her big ole’ noggin off the ground for more than two minutes.

I know that crawling around on the ground is not the end goal. I know that constantly being on her tummy is not good for Abigail’s digestive system. I know that it would be so much better if Abigail could sit and play. But to see her progress these last two years is amazing. If you had told me that Abigail would one day love being on her tummy I would have laughed at you two years ago. Yes, we have a long ways to go, and we will keep pushing Abigail. We struggled with tummy time for so long, but the therapists kept saying it would help her strengthen her neck and core, and would you know that it took months and months of tears and struggles but her neck and core are so much stronger now. Hard work is hard, but goodness that little girl is a fighter and I am so proud of her. I am proud of her struggles and her triumphs. I am proud that she does not give up. I am proud of her stubbornness and determination. I know we have a lot more to achieve, but it is nice to be able to say that Abigail now rocks tummy time! If she can conquer this than what else is she capable of???

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Today, you can barely get Abigail off the floor while on her tummy. She loves tummy time, playing, and having mobility!!

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Goals for Abigail

I have mixed emotions about the new year. I love the excitement of beginning fresh and dreaming about what another year holds. But resolutions and goals stress me out. I’ve always preferred calling them things I want to do rather than goals. I know that’s silly and the same thing in reality but the word goal makes me shrink away. Because often I don’t meet these said goals I set for myself, and I hate failure. But every year I list some things I want to achieve in the different areas of my life – marriage, family, children, personal, ministry, relationships, etc. I’m pretty excited about my dreams this year and I am trying to make them more practical to do since I’m a busy mom. I’m not going to share with the world all my expectations for the year, but I thought I would share the ones I want specifically for Abigail.

I know these are lofty dreams, but if you don’t aim high then what do you have to work for? I am still developing plans on how these dreams will be achieved, but I am praying this is another year of big progress for us! Abigail has come so far and it only shows that she is capable of doing great things! I am still learning how to teach her and how she learns best, but we are learning together and that’s fun!! But here are the four goals I have for Abigail this year.

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Us from a year ago. Just having a lazy day playing in our bed. Here’s to more family days together!

1.) Monthly Family Date
Of course, I want to date my husband more and we have plans in the works to make that happen, but I think it’s so important to spend time as a family too. I love dinners around the table when we are all home and adding in a monthly family date night will be so much fun!! With Abigail we can’t do as much as we could do with a normal toddler, but I still plan to make the monthly activities fun for us all. January’s family date includes making our on pizzas and decorating cookies. Nothing crazy but we never get to make a mess all together and then we get to pig out on delicious food after it’s all over! Pictures will be coming. This is one of my favorites goals!!

2.) Being more intentional with my time with her
A lot of times while we are playing I pull out my phone and check social media or I watch television while we pass toys back and forth. Even though I am physically present, often my mind is a million miles away. I want to be more intentional with our playtime. Play time is where children learn a lot and I want that time to be meaningful to her and to me. I want her to know she is more important than a mindless sitcom or what so and so just posted.

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We love our therapists and we are excited to gain some new ones and find some new doctors!

3.) Find doctors and therapists that can help us
This one has been on my heart for awhile now. We are in a rut with our doctors and it’s time we change things up a bit. No one is helping us, and I believe they have no idea what is going on with Abigail so instead of saying that they are just dragging their feet. So it’s time to find a new neurologist who can give us some direction. And a lot of moms I have talked to have given me suggestions on other types of doctors who could help us too. So this year it’s my duty to research and find new doctors to try to get some answers for my little girl. Also, I want to try to get her into aquatic therapy! I think it would be fun and the benefits would be perfect for Abigail. We are also starting with a new occupational therapist this year and I am excited to see how that helps her too! Just a lot of needed changes happening in 2018.

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Fun crafting from 2017. Looking forward to learning more fun things with her in 2018!

4.) Make weekly lesson plans and focus on key things I want her to learn
Abigail will be three in May, and she still has so much she needs to learn. We are so focused on getting her to sit and hold toys that she never hears colors or numbers or animal sounds like a typical toddler. I know it’s a long stretch for her to learn these things, but I want to start introducing them to her on a more regular basis so at least she will be familiar with them. This year I plan to make ‘lesson plans’ of sorts each week so I can focus on different things we want to learn for that week. Repetition is key! Again, I have no idea what I am doing, but I just want to have fun and spend that intentional time with Abigail as I try to prepare her for preschool and kindergarten. So here are some things I want her to learn this year or at least be familiar with.
– Animal sounds
– Identify colors
– learn to color
– Know her age(hold up fingers)
– Know 15 signs in sign language
– Know family names
– Say real first word
– Stack objects
– Sit for 5 minutes
– Bear weight in legs
– Feed herself with spoon
– Drink by herself

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!

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Abigail’s Favorite Things

Abigail likes lots of things, and she is always happy and giggling. I could write pages and pages about her personality and things she likes, but I thought I would share 10 things she really loves. Of course she loves her family and being tickled and eating. All things toddlers love too. But here are 10 of Abigail’s favorite things.

1.) Abigail loves to be tossed and turned and flipped and dropped. She is a little thrill seeker. Abigail was born with zero reflexes so she has no fear of falling or being dropped. Plus, she has never fallen over or tripped so I don’t know if she is scared of things like that. I always tell people if Abigail could walk she would be that child who has already broken a leg jumping or climbing on something. She has a very adventurous soul!

2.) Music! This girl loves all kinds of music. We can be watching tv and she does not pay any attention to the show until music comes on. We have listened to a little bit of everything and she loves it all! That’s why I am so glad we found The Music Class. Once a week we get to go and enjoy music with other children. I hope she has some musical talent, because that is one thing I lack!

3.) Chick-fil-a. Well who doesn’t enjoy them some Chick-fil-a? But thanks to G-mama (my husband’s mom) she has discovered a true love of their chicken, fries, and ice cream! That girl can put her away some chicken!!

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Enjoying some CFA!

4.) Watching people. Abigail is a people watcher if there ever was one. It’s hard to get her to eat at restaurants because she simply likes to stare at all the people around us. Today in Walmart the lines were ridiculously long and the older couple behind us were so sweet. Abigail loved them! She does not often meet a stranger (well as long as they are an adult).

5.) Chapstick. This girl loves playing with chapstick tubes. We played with one for about 20 minutes the other day. And she likes putting it on, and I am glad in this cold weather!

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A girl with a tube of chapstick. She could not be happier!

6.) Emptying containers. Anything she can empty she does. A basket. A bag. A purse. A toy bus full of people. If the objects can come out then Abigail will take them out. She usually helps me clean up too so I am thankful for that.

7.) Wind. I know that’s an odd thing, but when the wind blows in her face she giggles. I know she is loving this cold wind these last few days! The cold does not bother her because she is a little heater, but this wind is perfect for her.

8.) Talking on the Phone. When family calls me I often put it on speaker phone so Abigail can hear and talk too. And we FaceTime my mom almost every day. Abigail does not just ‘talk’ to everyone she screams. You know how older people who talk on the phone like to talk louder like that will help you hear them better? Well Abigail does the same thing on the phone. It is an obvious scream talk. She has also learned to pretend to talk on the phone. She will pick up a toy or a shoe and hold it to her ear and scream into it. It’s so cute! I am glad to loves to talk to people and to herself.

9.) Other people’s pain. This makes her seem cruel, but hear me out. Whenever you stub your toe or knick yourself a little she laughs. I guess it’s that reaction you make that she thinks is funny. Abigail does not know what hurt or pain is so you probably do look funny hopping around or making silly sounds when you get hurt. She loves the word “ouch” too. Like if you’re playing with her and you hit yourself in the head with a toy and say ‘ouch’ she laughs so hard! She is a mess.

10.) I saved the best for last…DOORS!!! She is obsessed with them! All doors. Closet doors. Sliding doors. Bedroom doors. Cabinet doors. Doors on her doll houses. Put this girl in front of a door and she is instantly entertained. She just sits there and opens and closes them. I am not sure what the fun is, but she loves doors. I think she could play with doors all day. A funny story about this for you all. While I am getting ready in the mornings I sit her in front of my bedroom door so she can open and close it and be entertained. Well one morning I was running in and out of the bedroom straitening things up and putting a load of laundry on. While I was out of them room Abigail happened to close the door. This would not be a big deal except that she then proceeded to crawl right next to the door so she could open it. That is when there was a problem. The door opens into the bedroom. Abigail was laying behind the door blocking it and I was on the outside in the hallway. Have you ever had to give instructions to a toddler who cannot really move or communicate? It is fun! I could only get my hand through the door and I didn’t want to hurt her. So I am telling her to scoot back and trying to push her back at the same time. We finally worked it out together and she got away from the door enough that I could make it in. Yes, the adventures we have around here!

Well there you go – a very random list of 10 things Abigail loves. She is an odd child, but we love her so much! I am so glad she is interested in things and has likes and dislikes now. It is so fun to watch her grow up. It hit me today that she is going to be three in about 4 months. Three years old! My little girl is growing up and I don’t want to forget that she loves playing with doors all day long and how she laughed at the silliest things. I don’t want to miss out on her learning to pretend play and figuring out how her hands work. I love these days with Abigail, and I can’t wait to see what else she learns to love in the days to come!

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A New Year

Last year I wrote a blog about how 2017 might just be a year of miracles (you can read that blog here). Well, I am not sure it was the miracles we were necessarily looking for, but 2017 was full of some good things! Yes, very small, simple blessings, but to us these things were BIG. Jordan was promoted at work and even though he had to pick up a second job we were blessed financially to finish the year with only one income. We never were scared of where our next meal would come from, or lacking clothes on our back. Sure, money was tight and we could not splurge on the latest, greatest things we wanted, but how badly did we need those things anyway? We found a church home (finally). After searching, we now call Eastwood Baptist home. We are not involved as much as we would like to be, but that is something to work on this year. I retired my old Jeep Liberty I had since I was 15, and now drive a tank (that’s what I call the Expedition because it’s HUGE). I like having the room and being the big guy on these Cobb County roads. And this small town girl actually does not mind driving around here now. I even honked my horn at someone the other day! So watch out world!!!

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Abigail achieved some milestones as well. Again, not your typical ones, but around here we celebrate everything! Abigail can now feed herself, she loves to pull up with her arms, and she can crawl around pulling with her arms so well now. She loves to play with her toys, and loves you playing with her. She has found a new love for Sesame Street. She loves music and laughing. She is getting friendlier around people, and even around little kids! We started speech therapy, which is helping so much. Abigail is learning sign language, and can do about five signs by herself now. She is becoming more and more vocal everyday! She can say, “bye”, “yeah”, “ma-ma”, “da-da”, and sometimes we swear we here a “hey”. She is sleeping in her new big girl bed like a champ, which we are all grateful for. We just switched her to a new OT, so we are excited to see how that will help her. And she is growing up to be the most beautiful blond headed, blue-eyed girl you will ever meet.

Every year I try to focus on a key Bible verse and one word to keep me going throughout the year. My 2017 word was “Press on” from Philippians 3:14, “I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.” I just really helped me when things would come up with Abigail or I would get discouraged. Almost like Dory in ‘Finding Nemo’ said, “Just keep swimming.” That’s what kept playing in my head, ‘just keep pressing on.’ God has called me to this life, and He will see me through. But every time I wanted to quit and throw in the towel I was reminded of this verse. I was so helpful! I am glad God impressed it on my heart last year.

So these last few weeks I have been thinking of what my 2018 word and verse would be. I haven’t come across anything, but today I sat down with my new devotional and the very first verse was Psalm 9:10. It could not be more perfect. It reads, “Those who know Your name trust in You, for you, Lord, have never forsaken those who seek you.” So my word for 2018 is seek. I pray I seek the Lord this year. So often I feel like God is a million miles away, when in reality He is right beside me but I forget to seek His face. I want to seek after my husband, my family, and others in my life. I want to seek God’s face in decisions I make, and I want to seek His love, joy, peace, and forgiveness in my life. So here is to a year of seeking. I am not sure what will be found by the end of these twelve months, but I pray as I blog in the beginning of 2019 that I can say I found some amazing treasures in the Word of God, and in my life that I have taken for granted. I pray this year will be full of blessings and treasures and wild adventures! I love how Ms. Frizzle says it on ‘The Magic School Bus’, “Take chances, make mistakes, and get messy!”

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Our Christmas Sloth

We have a Christmas tradition in our house that started when I was just a child. Every year my mom would let my brother and I pick out our own Christmas ornaments to hang on the tree. Then when we got married she gave all our ornaments to us. Well I wanted to do this when Jordan and I got married, but I wanted ornaments that reflected the year before. Then Abigail came along and I had to start buying her ornaments too.

I’m usually on top of things – like I know what ornament to get in October, but this year I just couldn’t find the right one for Abigail. I knew I wanted to get her an ornament that represented her getting her little pink glasses. That was a big thing for her this year, and what people know her for. But they don’t sell a lot of ornaments with glasses on them. So my next plan was to buy a pink pair of kids shades and pop the lenses out and tie them to our tree. Well can you say tacky?? Okay, so then I thought I would buy a cute animal ornament that reminded me of Abigail and buy some wire and attach pink glasses to said animal. Now that would be cute I thought, so now what animal reminds me of Abigail? I had no idea. I texted Jordan at work and right about the time he responded I thought about a sloth. Two minutes later he replied with sloth. Wow! We hadn’t even talked about it and we both thought the same thing. So I got on Etsy and found a shop that sold little felt sloths. The owner even put little pink glasses on the sloth after I told her what I wanted. It’s one of my favorite ornaments on our tree now. My little Abigail sloth!

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See the similarities between her and the sloth behind her? Such a perfect picture for this!

But why is Abigail like a sloth? I googled sloths and learned some cool facts about them and I have 10 ways Abigail is just like a sloth. They made me laugh so enjoy!! And Merry Christmas…I’ll be here admiring our little sloth ornament.

 

  • Sloths are slow. Everyone knows that, but what’s is funny is that sloths are pretty useless when they are on the ground. That’s why they stay in the trees all the time, but once a week they have to get down to go to the bathroom and that is when they are most likely to be ate because their long claws that help them navigate the trees, make them obsolete on the ground. Abigail can relate. She is pretty obsolete on the ground too. Sure she can wiggle and pull herself around slowly, but don’t expect her to be winning any marathons with her sloth-like movements.
  • Who has ever seen a picture of an ugly sloth? They are all so cute! And Abigail is no exception to this sloth rule. Everywhere she goes she gets compliments of her beauty.
  • This one made me laugh, but sloths only poop once a week. It has something to do with their slow metabolism. But gosh, we struggle with Abigail’s bowel movements all the time. Since she never is up or moving I swear her little bowels hate her, poor thing.
  • Contrary to popular belief, sloths in the wild don’t really sleep that often. They sleep about 10 hours a day. Abigail also does not sleep that often either. She is getting better in her new bed, but bedtimes are a struggle around here.
  • Sloths can turn their heads like an owl because they are missing two vertebras in their neck, so that makes them pretty flexible. I have never seen a more flexible kid than Abigail. Her PT always says things like I am not sure this is the right way for her to move, but she seems to be able to do it so lets go with it. She can reach the top of their head with her toes. When I put jackets on Abigail I swear I bend her arm backwards, but she doesn’t seem to mind. If she were ever able to I would love to put her in gymnastics!
  • Sloths are not social creatures. They live alone unless it is time to mate. Abigail is social to adults, but not to children. She would be okay being the only kid in the room at all times. Maybe she is just a little jealous of them too.
  • Baby sloths are very attached to their mothers. They stay together up to four years before the baby sloth separates from them. Gosh, I feel for that mom. Abigail and I have a strong attachment. I cannot even leave the room before she starts crying missing me. She literally goes everywhere I go.
  • Sloths are only 25% muscle. I feel like that’s Abigail. Her poor little muscles have caused us issues from day one. Whether it’s her eyes, her legs, or her core it’s all a muscle thing.
  • Sloths are tiny for being mammals. They just don’t get that big, and I don’t think Abigail every will get big either. She has always been in the 5-10 percentile of her weight. And her feet and hands are the tiniest little things.
  • A sloth’s facial coloring makes it look like they are always smiling. And Abigail is always smiling. I don’t know how or why but she is. Even this weekend after throwing up about 8 times in a row she still laughed in the doctor’s office! That’s our little sloth!!

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.

You Would Too

Do you remember that oldies song “It’s my Party”? The lyrics go, “It’s my party and I’ll cry if I want to. You would cry to if it happened to you.” I know it’s a weird connection but that’s the song I thought of as I began to write this blog last night. So many people say how I’m a great mom or how Abigail’s blessed to have me. Maybe I am. Maybe she is. There’s a ton of special needs parents and care givers that are amazing!! I’ve met only a small handful and their stories need to be heard by everyone. Special needs parents are some of the most amazing people I’ve found out. But like the song goes, if you had a special needs kid you’d be pretty amazing too.

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Just a few days after we got home from the hospital before we found out about this journey we were about to be on.

Let’s face it. If you’re a parent you are amazing. The responsibility God has given you to raise your child or children is one of the biggest under takings you’ll ever have. You are raising the future in your home right now. It’s huge!! It’s scary!! And often it’s a rollercoaster of emotions. Parenting does not come with rule books and how-to guides. And as soon as you kind of think you have one kid figured out another child comes along who is completely different. Parenting is a privilege and a blessing, but one that should not be taken lightly. So every parent who loves their child unconditionally is amazing in my book!!

But as a special needs parent you just have a few extra responsibilities. You often have a list of doctors to call. Often you have to deal with insurance companies and other financial assistance companies and organizations. You grow to realize there are not a lot of helpful people out there to assist you, so you learn as you go and learn to be assertive and to be your child’s biggest advocate. You are your child’s voice in a medical field, which is often full of people who are just after the next dollar or who think your child isn’t as high a priority. If you had a special needs child you would learn all about the ends and outs of the medical field too.

 

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Then at two months old we got the news about how our perfect little baby may have some vision issues, and our special needs journey began.

A special needs parent often has to be more accommodating and a quick problem solver. A lot of special needs children have physical and social limitations that you have to work around. I know a lot of children with sensory issues who cannot handle loud places, even crowded restaurants. Parents bring noise canceling headphones to help them in those situations. For us, Abigail cannot sit up. For the longest time we carried our own chair for her to sit in when we went out. Now she is stable enough to sit in high chairs at restaurants. But often the hostess will not ask us what we need, so she will get a booster seat for the booth. Abigail cannot sit in a booster seat because she would slide right out. So then I have to go chase down someone to replace the seat with a high chair. It’s a mess. But if your were a special needs parent you would learn to accommodate in a world that is not often accommodating to people with special needs.

Often a special needs parent has to deal with medical issues with their child. Whether it is seizures, a g-tube, or a host of other symptoms, parents have to walk through these scary things with their child. Not to mention the surgeries that often come with these medical issues. We have been blessed not to experience any medical issues with Abigail, but I have talked to many a mother who has and it is always an awful part of their story. One mom even said they feel as if they are going through it with their child. As moms we are often more scared and hurt and worried about our children than they are. But if you were a special needs parent you would do all this too if you knew it was best for your child.

 

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While we don’t have any medical issues, Abigail has done a lot of testing. This was taken at the lab while we waited for her blood to be drawn for about the fourth time. I was over it – she was as happy as ever.

Often as a special needs parent you have to help your child in ways you don’t expect or teach them things that should come naturally. They are much more dependent on you. Special needs children need help doing even simple things like getting dressed and using the bathroom. I still have to feed Abigail all her meals and give her every sip of water or juice she drinks. We aren’t even considering potty training, and diapers may be forever in our future. We still carry Abigail everywhere she goes. I have to teach her how to play with new toys and how her hand can make a fist. But if you were a special needs parent you would do all this too.

Lastly, often our dreams and expectations of our children crumble before our eyes. No one plans to have a child born with autism or Downs or a genetic disorder. Often parents do not know anything is the matter with their child until they are months, if not years old. So by that time you have planned for them to be your older child’s best friend, or a star athletic or a well-known doctor. Every parent dreams about their child’s future. And often as a special needs parent these dreams are broken as diagnoses come along. But that doesn’t mean we don’t dream. It is just that our dreams and goals are very different. My dreams for Abigail has changed dramatically in the last few years. Now I want her to be able to walk, to have accepting friends and amazing teachers and doctors. Things I would just take for granted when I was pregnant with her. But if you were a special needs parent your would adapt your dreams and expectations too.

The fact is that I am not anything special. God didn’t gift me with any extra abilities to care for my daughter. I am not amazing in any way. In fact I mess up a lot. I am lazy and don’t do everything I should. I don’t want to deal with doctors so I don’t call all the time when I should. I want to do my thing sometimes and not spend every waking moment helping Abigail. I am selfish. But I am a mother of a special needs daughter, and I will do anything I can to help her achieve her very best. Yes, we have to do things a little differently, but this is my normal. Abigail is my normal because I have no other typical child to compare her to. I would be scared to be around typical toddlers because I don’t know what they do. Around here we just take one day at a time and enjoy the small victories. I am thankful for my daughter and for being allowed to be her mom. Abigail teaches me more than I ever thought she could. Her joy and determination are contagious!! I am thankful to be on this journey with her and if you were a parent of a special needs child you would be blessed in ways you couldn’t imagine too!!

 

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