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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Dealing with Doctors

I was a very healthy child growing up. My whole family is. We rarely go to the doctor for anything, and if we do it is our family doctor running his own tiny practice in our tiny town. Needless to say I had no idea about the medical field until Abigail came along. And I still only know one tiny piece of the whole puzzle.

We have seen at least 10 different doctors in different fields for one thing or another the last 2 years. We have seen multiple neurologists because our first one gave up on us, and sent us to one at Children’s. We have been to countless eye doctors who have told us everything under the sun. We have been to the geneticist, an othropedic doctor, and even an eyes, ears and throat doctor once to do a hearing test. I am an expert form filler outer!

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One of the early doctor’s appointments. See how she was looking up all the time!

There are two things that all these doctors have in common though. One is that they have all said in one way or another that Abigail is a puzzle. They say it differently, but it all means the same thing. They have no idea what is wrong with our child, and they have no idea what to do for her. She is a square peg in their round holes. Most children like her also have other ailments, so even though Abigail checks some boxes she does not check the ones they want her to. I am sure doctors are not excited to see us when they look at Abigail’s charts. And secondly, everything they have tested or looked at has come back normal. On paper Abigail looks like a typical two year old. But in real life she is anything but normal.

Right now we have a geneticist appointment in February, which we scheduled back in June because that is how awful it is to try to get appointments made. There are only a handful of pediatric doctors that serve in these areas, so getting into see them is a nightmare. Our neurologist does not quite know what to do so she is simply running all the tests we have already ran over again. Our eye doctor keeps giving us little fixes like patches and glasses to help Abigail’s vision, but our neurologist says it is not her eyes it is the connections in her brain giving us issues. But the eye doctor knows these things will help and if not there is always surgery.

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Our little pirate. Just one more thing this poor baby has to go through!

On top of all this and keeping up with all the appointments, we attend three separate therapy sessions each week and go to music class. It is a mess. I want the doctors to talk to each other. I want them to care about Abigail and actually read her chart before they enter the room. I want them to know we have already seen 10 doctors before them and each one tells us something different, yet none of them have given us a single answer as to what is wrong. I want them to see Abigail’s progress instead of a two year old who cannot sit, stand, walk or talk. I see a two year old who has conquered mountains instead of one who needs to be tested and documented like an animal.

Just today we saw a new eye doctor and he was explaining what he saw wrong with Abigail’s eyes. He asked me if I saw her vision as being off any. I simply looked at him and said, “Sir, I see a child who literally looked up at the ceiling her first year of life. She wasn’t interested in anything and today she tracks objects and looks into your eyes. That’s huge! So no, I don’t notice her eyes being a little crooked or shaking here or there occasionally.” His reply, “Well from what I see her eyes do seem to be a little off still.” Oh if he could only know from where we have come!

It has been a long journey, and we are only at the beginning of it. I know so many other parents who would tell me I have it easy or that they have been through worse. And I am thankful we do not have to see cardiologists or other doctors for Abigail’s health. I just pray we find a doctor along our journey who we love and who cares about where we have been and how far this little fighter of mine has come.

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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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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