How Abigail Learns

We began occupational and physical therapy when Abigail was just 5 months old. At that point we had no idea what we were in for. We had no idea how our journey would proceed. We simply knew we had a little baby girl who the doctors were telling us was way behind in muscle tone. Abigail was our normal and still is. We had no idea a five month old shouldn’t be doing these things. Thankfully we had some great therapists who helped us learn what we should be doing with Abigail to help strengthen her little muscles.

Abigail has always been progressing forward but at the slowest rate you could ever imagine. The last time we went to see our neurologist she asked how Abigail had been doing. I was so excited to tell her about all of Abigail’s progress in the months we hadn’t seen her. But putting it in words seemed so dismal. “Well she can kinda roll over now and she is making more noises.” It just didn’t sound that impressive, but if she could just live with Abigail for a few days you can see her huge strides of improvement. But to strangers Abigail is still a two year old who can’t sit, stand, walk or talk.

So how does Abigail learn? How does she get stronger? Repetition. Repetition. Repetition. We have been doing the same things with her from the beginning it feels like. Sometimes things click right away. It only took her a couple of times to learn how to fist bump and wave bye-bye. Teaching her a new sign for sign language usually only takes a few times as well. Now she does not correlate that the eat sign means she is hungry, but if you ask her if she wants to eat she does the right sign so we are getting there. But feeding herself has taken 18 months. We have tried everything, and then one day out of the blue last week she just picked up her goldfish and ate it perfectly by herself. I am not sure why she catches on to some things instantly and other things she still does not get even though we have been working with her for months.

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Either way, we have to be intentional with Abigail. And slow. You cannot ask Abigail to do something and then walk away because she did not do it. Chances are she will do it as you turn your back. Her processing time is slow. So it takes her a minute to wave bye when you tell her to. You just have to give her a chance to listen and process what you said. I like this about Abigail because it has taught me slow down. I am a rush, rush, rush kind of person. Having Abigail has taught me to pause now and then.

Abigail is a smart cookie. I think my husband put it best. Abigail is more and less than meets the eye. Let me explain. When a stranger first looks at Abigail he or she probably thinks she is a normal child. Then I tell them that she has special needs and cannot sit, walk, talk, etc. So then Abigail becomes a special needs child who cannot do anything in their minds. But she is so much more than her disabilities. Sure she cannot sit up on her own, but if you ask her to dance, point, find her belly, or laugh she can follow your instructions perfectly. She understands what people around her are saying, and I swear she can sense people’s emotions. She definitely knows when Mama is leaving and her physical therapists has told me multiple times what an amazing little sense of humor she has. Abigail is pretty fun to get to know and everyone who has spent more than 10 minutes with her just loves her!

Abigail’s processing time may be slower than others, she may not be able to physically compete with another toddler her age, and she cannot communicate with words, but everyday she is learning and growing in her own way. At five months old Abigail barely even cared about the environment around her. She could care less about toys or food or anything really. But to see where she is today, even from where she was a year ago is amazing. She loves her toys and gets so excited when her therapists brings out her big bag of them now. She is ‘talking’ up a storm and is wiggling everywhere. Her head circumference is in the 94 percent tile (her weight is only in the 10th) and we always joke about her huge head. But maybe it is just holding all those smart brains up there. I love watching her learn and I cannot wait to teach her more!

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Five Prayers for My Daughter

Abigail’s future is a blank slate, and our hopes for her probably look different than an average two year old’s parents’ dreams would be. While most parents pray that their toddlers grow up to be influential, honorable citizens we are over here just hoping her legs will one day work and she will walk. But even though we have no idea what Abigail’s future holds for her I still have five specific prayers for her that are constantly running through my head at any given moment. But I especially pray these prayers over her as she sleeps. There is just something special about sleeping children that makes you know that good things will come.

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Announcing we were having a girl – our Christmas present that year!

1.) I pray she is a servant. I know that’s a weird one, but it’s why we named her Abigail Paige. Her name has servant written all over it, and I only pray she lives up (or should I say down?) to her name. There was an Abigail in the Bible. She saved her husband and family by serving David and being humble in the future king’s presence. And Paige literally means ‘one who serves.’ I want Abigail to be a servant in a world that scorns that idea. I want her to seek humility and serve all she comes in contact with. Oh Lord, let her have a servant’s heart.

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Working hard and getting stronger everyday!

2) I pray for physical and emotional strength for Abigail. She is such a motivated little thing and is so strong in her own way. I pray her strength allows her to go a long ways in life. I pray her little body continues to get stronger day by day. Those muscles are our biggest problems and I think they will continue to get stronger as we continue to work with her. But not only physical strength, but Abigail will need emotional strength too. She’s going to have to overcome a lot as she gets older. I’m sure kids will stare at her or even say things to her as she gets older and goes to school. She has the possibility of being in a wheelchair her whole life. That’s prime staring material. And I know as she becomes more and more aware she will realize that kids are running around and playing and she cannot physically keep up with them. Oh she will need lots of prayers for strength and determination as she conquers all these things.

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Even when she looks different than everyone else, she is still beautiful!

3) I also pray that Abigail remembers she is beautiful and perfect just the way God made her. I’m not sure why God made her so weird, and why her body doesn’t work like normal. But she is still perfect and sweet and I pray she doesn’t look at all she can’t do or compare herself to others. She has so much personality and she can do so much but she just has to remember that. I pray Jordan and I always encourage her to be happy in her own skin and that she is beautiful, smart and important just he way she is.

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This is one of those pictures to put in Abigail’s senior yearbook, but look at that happiness!

4) Abigail has always had such a joyful little personality. She is our sunshine because she brightens up the room. Our physical therapist always says she has an amazing sense of humor. And her laughter is contagious. I pray that this joy sticks with her throughout life. So many people lose their joy as life happens around them. Abigail might have a lot against her, but I want her joy to remain.

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Abigail playing with her cousin. Hopefully they will be lifelong friends.

5) The last prayer is a little odd probably but still a very dear prayer to me. I pray for the people in Abigail’s life to be a benefit and support for her. I want to find a doctor that will support us and help us seek the best for Abigail. I want her therapists to continue to love her and help us learn how to help her best. (Thankfully we have been blessed with amazing therapists that have done this so far and I know it will continue!!) I pray that her teachers will help her grow and will be patient with her as they see her potential. I pray for friends to come along in her life and have fun and can socialize with her. I pray these friends can support one another and live each other unconditionally. I pray for Abigail’s best friend to come along and be bosom buddies as Anne of Green Gables would say because everyone needs a bosom buddy.

These are my top five prayers for Abigail. Of course I pray we find answers one day. I pray we find the right school. I even think about Abigail’s future mate, but honestly I don’t know if she will be married right now. She may always be a home body with her mom and dad at this rate. That’s why praying for future things is hard. We just don’t know.

The one thing I don’t think to pray for is healing. I sooo want Abigail to walk one day. I want her to be a normal kid and run around and talk and sing. But there’s nothing wrong with Abigail. She isn’t broken or messed up. Everyday she progresses forward and that’s what I pray for – progress. Quick fixes are not in our future. Could Abigail wake up tomorrow and walk? Yes, that’s a possibility but more likely we will build to that point if she is capable of walking. Abigail’s progress may be slow and frustrating at times. But my goodness, when she learns a new skill it makes you want to get up and do a jig. We celebrate the small victories here and I like that. Yes, we want our daughter to be normal, but I wouldn’t trade this process for the world. Abigail’s disability is not only shaping her into the person she is becoming, it is shaping me into a new person too. So today these are the prayers I pray for Abigail!

What are some prayers that you pray for your children?

 

Our Simple Life

I thought I would share what a day in our lives look like. Of course each day changes and you cannot schedule a toddler every second, but on average this is what we do. I love my little buddy, and we are both going to miss each other when she goes to preschool next year. I think my mama’s heart is not going to be able to handle it. But I know Abigail needs to see more people than just me everyday, and I know that I need to be away from her too. But for now I treasure each day I have to spend with my little sidekick.

I wake up around 8 and wait for someone to start stirring. Abigail is normally up around 8:30 or 9. We are late raisers and I am okay with that. I know one day we will have to change our sleeping patterns but for now it works for us. Abigail is happy in the mornings, and we usually snuggle. She never pees at night so we have a very wet diaper when we go in morning. My mom has always said this will make it easier to potty train and I hope that is the case. We have a long ways to go before potty training can start, but maybe one day that will make it easier.

We go downstairs and fix breakfast for us both. She plays with her toys while I get everything together. I eat yogurt and granola. She eats a scrambled egg and cereal and maybe yogurt if she feels like it. She is usually pretty hungry, so she eats well. From there we snuggle and open the blinds in the front room. I have been trying to get her to learn to pull the cords to give her a job to do each morning. And then we get dressed and ready for the day. I lay her down in her bedroom with toys and music while I get ready and straighten up or put a load of laundry on. Then we get her dressed and that crazy blonde hair brushed the best we can.

Then depending on the day we try to go somewhere each morning. Mornings are Abigail’s best times. On Mondays we have physical therapy. On Tuesday’s is Music Class. On Wednesday’s is speech and occupational therapy. On Thursday’s she stays with grandma while I go to Bible Study. And Friday’s we normally have free so we go to the park or to the grocery store. One way or another we get out of the house for a bit, mostly for mama’s sanity. I like having somewhere to go each day.

We return for lunch and we usually watch TLC while we eat our sandwiches and fruit and goldfish. Then the afternoon fussiness begins. We try to have wiggle time and snuggle time. But at 2 it is nap time. We settle down with a good book or two and then it is off to Mommie and Daddy’s bed for a nap. We have to hold her down still so she does not fall of the bed, but it usually only takes her about 20-30 minutes to fall asleep. Some days I nap with her. Some days I use the hour and a half to clean or blog or just do nothing. It just depends on how motivated I am that day.

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I usually have to wake Abigail up because she would sleep the day away and never go to bed at night if we let her. She is out of it when she gets up. It takes her a good 20-30 minutes of snuggles to finally wake up. Those are some of my favorite minutes of the day. By then, if Daddy has been working all morning, he is home. So it is his turn with Abigail while I get dinner ready and the house straightened again.

We eat together at the table and Daddy normally gets her all fed while I clean up afterwards. She is the slowest little eater but she eats well! In the evenings we try to take a walk whether in the neighborhood or at the local outdoor mall 5 minutes from our house. We do some exercises and just are together as a family, watching TV, tickling, playing, and wiggling.

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Wrestling with Daddy before bath time.

Then before you know it it is bath time and snack time and snuggle time. Around 9:45 or 10 we head to bed. I know that is late but we honestly still are not close to going to sleep yet. This is why we sleep in. I hate the late bedtime but for now this is where we are. If anyone has suggestions about how to get a toddler to sleep faster please let me know! Her therapist and pediatrician have both said this may be a result of her finally gaining freedom and mobility. If you just learned to move you would want to wiggle all the time too. But we are trying to teach her that bedtime is bedtime, and give her tons of time to wiggle during the day. So, at 10 I read her a story or two and then lay down and hold her again. Bedtime takes longer to go to sleep. It normally takes between 45 minutes to an hour and a half. She is usually asleep by 11 or 11:30 and then it is my turn to sleep.

There is not anything exciting about our days. We like the simple life. Of course, days change and we do other things in between the usually stuff. Whether Grandma comes for a new adventure or we go to a doctors appointment that day. Or on days we miss therapy because our therapist cancel, we go to the store or just explore around town. Abigail is pretty chill, so it is easy to take her places. These next few months have lots of new adventures in store as fall festivals approach and then we have a big family wedding coming up. But all in all it is just the three of us living life with each other one day at a time. I love my simple life and I am glad I get to share it with my family!!

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We are on a Move

Well folks she is off! Well kind of. Abigail will not be winning any races soon, but she is moving. It is exciting to say the least. She can flip herself over, and she loves tummy time now. That in itself is a huge deal. Tummy time has been a struggle for us from the beginning, but lately she will stay on her tummy for an hour at a time. She can pivot around any direction she chooses. And she can push herself backwards like a champ. We are even starting to see her wanting to come forward. Her little legs are trying their hardest to get under her, but they just do not quite know what to do yet. Abigail has never used her legs a day in her life, so the fact that her legs even are attempting to do something is a miracle. I know this does not sound that impressive on paper. I mean we have a two year old who still cannot sit, stand, walk or talk on her own. But if you could have seen her even 6 months ago, the fact that she has this much mobility is amazing.

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Our little leap frog, learning to push herself forward!

To say we are excited would be an understatement. We have been waiting for some mobility for, well two years now. And Abigail loves it! She rolls and scoots and pivots everywhere now. I love just setting her down with her toys and watching her play. Every parent loves when their child reaches milestones. You smile the first time they sit, and cheer when they take their first step. A sense of pride just wells up in your heart. But imagine that your baby never sits on their own even when they are 9 months old. Imagine seeing other babies your child’s age crawling and walking while you are still trying to just get your child to play with a toy for a minute. It is very discouraging. We have waited for this for so long, and to see her with this limited mobility is huge. It is even more rewarding when you have to wait for things to come.

And while we are excited about her moving and growing in strength, we are trying to teach her there is a time to play and a time to sleep. Abigail believes sleep time is play time. She wants to wiggle and roll and play when we lay her in bed. It is cute but when it’s midnight and she is still rolling around it becomes not too cute. I am exhausted. She is exhausted. These late nights are wearing on both of us. We have taken her mattress out of her crib and lay beside her now and literally hold her down to keep her from wiggling. We are trying to teach her that bedtime is bedtime. Last night it worked. She was asleep within 30 minutes as opposed to the 2-3 hours it takes usually. Now we just need to get a bigger mattress and I think she may just learn to put herself to sleep.

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How I found her one morning this week. She was dead asleep, but had managed to turn herself around and still perfectly land on the pillow. How?

If you would have told me six months ago that this girl would be keeping me up until all hours of the night because she would not stop moving I would have just rolled my eyes at your positive craziness. But that craziness is coming true! Just today I was talking with Jordan, and he said, “Maybe this girl will learn to walk after all.” Just maybe we will have a child who will be mobile. We still have a looong ways to go. Right now a snail could beat Abigail in a race, but the fact that she is so motivated and excited to move means she will keep trying. Abigail will keep learning. She will only continue to get stronger, and maybe just maybe we might have a little crawler in our hands.

Now here’s to baby proofing our house. Yikes!

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Baby Steps of Intentionality

Be intentional!

It has been one of my life mottos for awhile now. I think I picked it up while working on camp staff at summer camp for a couple of years. It applies to a lot in life. Be intentional with your relationships, your work ethic, your faith, your self-care. The list is endless. So often I tend to get into my routines and I begin to just float through life. But by reminding myself to be intentional with every moment, I am reminded that I need to be fully present and aware in everything I do. Floating through life without being intentional with your thoughts and actions quickly leads you to places you never thought you would be. It can lead to discouragement, defeat, purposelessness, doubt, and fear. A little intentionality every day can make your whole outlook on life so different!

If anyone has taught me to be intentional it is my daughter. From day one we could lay Abigail down on her play mat and just leave her. She was not a cuddly baby. She is still the same way today. Even as I type this she is laying beside me just playing with her toys as content as could be. If we are not intentional about playing with her and doing her exercises she would be fine just laying on the ground all day. We have to intentionally take time to do all the things our therapists want us to do and still have fun too. Of course, these things are not a burden and we love playing with Abigail and taking her places, but she is not the one begging to go or running around like a mad woman driving us crazy.

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Abigail pushing herself under the table. She is a mess!

We also have to intentionally teach Abigail everything! Most typical children do not have to be taught how to feed themselves or sit or move. They just somehow magical pick it up and before you know it they are off and into everything. It happens so fast that as a parent you can barely keep up with them. But with Abigail, and many other special needs children, this is not the case. We have to intentionally teach her how to sit. How to hold a spoon correctly. How to get hair out of her own mouth. How to play with certain toys. And most of these things we have been teaching her for over 18 months now and she still cannot do them, much less mastered them.

Just this week our therapist wanted us to start putting toys just barely out of Abigail’s reach so she could start learning to come forward instead of always pushing herself backwards. So I sat down with her and put a toy just out of reach while she was on tummy time. Most children would learn to push forward and grab the toy easily. But Abigail just cannot figure out forward motion. She always pushes backward. So I had to get behind her and tuck her stubborn legs underneath of her and make her propel her body weight forward. She got the toy! So we did the whole process again. The third time I let her try on her own again. Well, she knew what she needed to do, but those pesky legs just do not work the way she wants them to. I shared a video of her on my Facebook wall. Those legs will always be an issue for us! After you have not used a body part for over two years I guess it takes awhile to figure out how to work it again, but maybe one day she will get those legs working.

But for today we are intentionally learning how to crawl. We are learning in baby steps. First strengthening our core, then working on our arms, and then one day we can get those legs fully under us and everything will click. Baby steps are slow. Baby steps are clumsy. Baby steps are unsure. But baby steps do eventually get you where you need to go, and we are making intentional baby steps of progress. I am a proud mama of a little girl who helps me be truly intentional every single day!

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When all you have is God

Yesterday we started going to a music class for toddlers in our area. Abigail loves music and our therapist thought this would be a good way for Abigail to have some social interaction with children her age. We showed up and the teacher was terrific! We sat in the circle with about seven other toddlers and their mothers. Well the class got started and in true toddler fashion there was chaos! Kids were running everywhere. Moms were trying to calm screaming boys. And on top of it all there was musical shakers and drums being played. I honestly did not think Abigail was going to make it, but she did. She never jumped or cried. She also did not move a lot, but she sat and watched all of this going on around her. I was so proud of her! Then a mother of a particularly rowdy boy sat beside me and said, “Wow, I wish we could switch kids. She is so calm!” I simply gave her a sympathetic smile and kept singing. How could I tell this perfect stranger that this was huge for my daughter to not be scared to death right now? How could I explain Abigail is not calm, she just cannot move? How could I explain that I wish my daughter was running around and singing on the top of her lungs?  How do I explain that for us to be here with her child is a big step for us? I couldn’t, so I simply smiled and kept trying to keep Abigail calm.

I love my little girl! She is beautiful and wonderful and such a hard worker. She has come so far, and I know she is a fighter. But days like today I wonder why could she not be normal. She has no idea that anything is wrong with her, but she will never be able to play with kids her age. She will always be behind in some way. Having a special needs child is hard and it is lonely. But it is the not knowing for me that drives me crazy. Not knowing what her future holds. The unknown is scary.

No one likes the unknown. No one likes waiting. Whether it is waiting to hear back from a job interview or waiting to hear news about a love one   waiting and not knowing are hard. And we have been in this period of our lives for over two years now. I have asked God why many times. Why us? Why Abigail? I have asked for answers. I struggle with many things, so I have asked for more faith because that is what living in the unknown takes. Tried and true faith.

I do not like faith. I do not like it because to have faith it means you often cannot see. You have to rely on another to guide and lead you. I like to be in charge. I like to be independent and alone. I do not like asking for help and it is hard for me to trust other people. But that is what God requires of us. He requires total obedience and little steps of faith daily. He requires complete surrender and complete trust in Him. But most days I just feel like that dad in the New Testament who cried out to Jesus, “I believe but help me in my unbelief.”

I believe lots of things. I believe God is good. I believe He is love – not that He loves us (He does that too). But that He simply is the embodiment of love itself. I believe God is just, sovereign, merciful and full of grace. I believe He has made One Way for us to receive eternal life through His Son, Jesus. I believe He is holy. I believe God is who the Bible says He is. But I question His ways. I doubt His goodness. I do not understand His purposes. That is where I need faith. When I have a hundred questions that cannot be answered I must have faith in what I do know. And what I do know is that God is the God of gods and King of kings. He has this whole world in His hands and in the end He is the victor. He has defeated sin, death and Hell itself and I will follow Him no matter what. Because while my faith may be small, my God is big!!

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My God Story on Prayer

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This picture was taken on this day exactly three years ago. There isn’t anything too fancy or exciting about it. Before having Abigail my mom and I made it our annual mother/daughter time to go see Beth Moore or Priscilla Shirer at one of their conferences nearby. Side note, we are going to start that tradition again this November and I’m so excited about our little weekend together full of encouragement!! But this was our trip to Warner Robbins, GA to see Priscilla share with a local church there. We knew no one and honestly I have no idea what Priscilla even talked about that weekend.

No, this picture isn’t about the conference itself. It’s about one small moment that happened there that will stick with me forever. During one of the breaks we were just sitting in our chairs talking with each other and a lady who had been sitting a few chairs down from me came over and sat beside me. She asked where we were from and the get to know you questions. But it’s what she said next that amazed me. This lady’s name was Nina. That’s all I know. I don’t remember where she is from, but I do remember her face. She looked right at me and told me that she was going to be praying for Jordan and me. I had just told her a had gotten married in February so I was only 6 months married at this point. She said she just felt the need to come tell me that everything was going to be okay and that no matter what we faced the Lord would be with us because He had some big plans in store for us. She promised to keep Jordan and me in her prayers in the coming days and then she went back to her own seat. We never saw her or talked to her again, and the whole conversation was less than 10 minutes. But Nina did something amazing that day, she was the first to pray for our family of three.

The conference was August 22, 2014 from the doctor’s calculations Abigail was probably conceived around August 18th, but we would not find out I was pregnant until Jordan’s birthday on September 8. So, as this complete stranger was telling me something was going to happen in my life and she would be praying for Jordan and I, neither of us even knew a tiny miracle was already forming inside of me. Nina was the first to pray for my baby whether she knew it or not. She listened to the prompting of God to come talk to a total stranger and God allowed her to be the first person in my life to pray over Abigail.

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Our twenty week sonogram when we found out she was a girl. We instantly knew her name would be Abigail Paige, the apple of our eye.

We have had countless people praying for Abigail and for us, and we are so appreciative for every prayer, kind word and encouragement that has been poured over us. But I am thankful God still speaks to the hearts of His people. I’m thankful Nina listened and came over to pray for us. And today I hope that you and I listen for God’s still, small promptings and that when He reminds us to pray for someone we will take the time to pray. You may have no idea what the person needs or is going through, but if God puts someone on your heart it’s for a reason. I had no idea I was even pregnant then, but God knew that little baby inside me needed all the prayers she could get so three years ago He sent us Nina to pray for us! Our God is good.

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***This made me giggle. The two hashtags I used on Instagram when I posted this picture were ‘Mommie time’ and ‘ready to be filled.’ Maybe I did know something was coming hahaha