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?

 

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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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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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Abigail’s Fear

I am not sure what a typical two-year old is afraid of. Maybe the dark or having to eat veggies. But Abigail is not scared of much. She doesn’t understand that falling could hurt her. She doesn’t understand the concepts of sharp or hot or dangerous. Thankfully she cannot really get into anything so that makes our life easier. We always joke about one day having to actually baby proof our house, and hopefully that day will come.

But Abigail’s biggest fear is children. Kids are unpredictable and fast. Abigail does not have time to process their movements so she gets scared. Abigail’s processing time is S-L-O-W. She bumps her head and it takes her a literal minute to process the pain before she starts crying. While adults know to approach slowly and are usually relatively calm, kids are not. Every time a child approaches Abigail she instantly tenses up and starts shaking. If they are brave enough to touch her, she begins to cry. Loud noises or fast movement, like jumping on the couch beside her, can set off the waterworks too. Children are just too much for her.

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All of us…it’s hard to take a picture with three littles. Do you see Abigail’s face?

We spent this last week with my parents and they watch my two nephews during the day. Benjamin will be two in November and Jackson is about to be 6 months. I figured she would go into hysterics with the two boys. The first day my mom brought in the boys while we were eating breakfast. Abigail cried about five times while trying to eat. She is used to quiet because it is often just me and her, and two-year old boys are not quiet. Every time Benjamin brought her a toy or ran by her chair she would start shaking and crying. But lo and behold, after she realized Benjamin wasn’t a complete threat to her life she actually sat on the floor and allowed him to pass toys to her. It was a beautiful sight.

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Benjamin and Abigail passing toys back and forth. Yes, her hand is touching his. It’s a miracle!!

Then later Benjamin thought it would be good to give Abigail some love and that extra kiss was just too much. Abigail went into total meltdown. She even cried when little Jackson’s foot touched her as they laid beside each other.

Children. They are scary sometimes. They are loud. They are crazy! But Abigail just needs her a friend so she can realize children really aren’t too bad. I hate she cannot play with other children. She cannot run or sit. She does not understand playtime. For her playing is just emptying out a toy basket and handing you things she finds. Abigail still does not actually play with her toys. But one day she will have to go to school with these things called children. She will spend hours in a room with them. I pray by the time she starts preschool she will be more accustomed to other children. I know we have a long ways to go to get her to realize children aren’t scary. But the more she is around them the better. So here is to conquering fears, meeting children and having more play dates!!!

**And a quick shout out to Benjamin for playing so well with Abigail, and for loving her despite all her tears! We had a great time with you last week!!

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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Our Connection

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I love this picture of us! Our hair is greasy, but those smiles are genuine. We had just recovered from being sick all week and I took Abigail outside to get some fresh air. That smile melted my heart, as it always does!

From the moment that seven pound bundle was placed on my chest I knew my life would never be the same. I was never one to dream about having kids. I never planned to get married really. But God had other plans for me when I met my blonde headed lover. I knew I would spend the rest of my life with this man about a month into dating him. And my man wanted kids. He was the dreamer of the family in that department. So a kid a got! And what a special addition she is to in our lives.

I had no clue what to do with this bundle. Abigail was born about 30 minutes before shift change so after the nurses had us all cleaned up they just left us. Jordan left me to go tell our family all the details and it was just me and Abs for a while in a room alone. I figured all the books said babies are hungry so we tried the whole eating thing and I had no clue what I was doing and literally no one to help me. I barely knew how to hold an hour old baby much less how to care for her needs. So while we had a few minutes alone we simply looked at one another, both trying to figure the other out.

I knew this baby would change my life. She would alter my dreams and my schedules. I still felt wholly unprepared to be a mom, but ready or not I was a mother and there was no turning back. Abigail was the easiest baby ever and for that I am thankful, and oh so very spoiled. Even as a newborn she rarely cried. I had no clue how to breastfeed, but she was a champ. I always say she did all the work, I was just there to hold her. She slept well even early on and she really wasn’t a cuddly baby. We would place her on the floor and do chores or cook dinner and she was as content as could be.

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Those fingers wrapped around mine…it’s a small connection but it means so much!!

When Abigail was about three months old we moved about 45 minutes away to be closer to my family. I helped part-time with my family’s business and my mom and grandma would often keep Abigail and just let me nurse her when she needed to be fed. This was our routine until my husband and I decided to move closer to his family and be nearer to a larger city with more job opportunities and opportunities for Abigail. We made our second move when Abigail was about 1.5 years old. It was then that I became a full-time mom.

Some people would argue that breastfeeding Abigail for a year is what connected us. And while it might have, I also believe if she had been given formula it wouldn’t have been any different. I truly believe our connection started when we made this move and I became the one person Abigail sees most often. I’m the one who wakes her up in the morning and puts her to bed at night. I take her to all her therapies and doctors. We go on errands and to the park. We play and exercise and do everything together.

This connection we have formed is deep and it is strong. When I’m in the room she wants me. She may hug others and laugh for a little bit, but she eventually tires of them and wants her mama. But lately I have noticed that we even reflect each other’s emotions. If I’m feeling sad or mad or upset I have realized Abigail’s isn’t herself. Just yesterday I was running a low fever and not feeling 100% and Abigail was fussy all day. There has been a few times where Abigail has choked very badly on food and I get scared so I end up scaring her and making the situation worse. Thankfully Daddy has always been there to calm us both down. But I have noticed this emotional connection we have lately, and it’s amazing to me that she can pick up on it.

I guess when you spend the amount of time together that Abigail and I do you are bound to learn the person. And Abigail know each other pretty well. Even though she lacks all forms of communication, I can usually figure out what she wants. She has her own way of communicating and I am thankful that we have such a bond that she trusts me to care for her in every way. I don’t know what her future holds, but discovering this deep connection with my daughter gives me confidence that we will be okay no matter if she can never walk or talk.

Just three short years ago I would have told you I would never be a mother, much less a stay at home mom. But now I am a mother to the sweetest girl in the world. And our mother/daughter bond is unbreakable! I want to be the best mother I can be for Abigail. I want you to know I love her and that I’ll always be there for her. And I pray this special bond we have formed continues, no matter what this life may hold for us!

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When Life is Hard

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Abigail has been wearing her glasses for about a week now.  She is as cute as a button in them, but they are not to help her see. Yes, they have a slight prescription for her far-sightedness but the glasses are mainly to try to help strengthen those eye muscles. Abigail’s eyes are actually what began this long, on-going process of finding what is going on with her. At two months her vision alerted the pediatrician something was not right, and we were sent to a pediatric ophthalmologist. For about her first year of life Abigail constantly looked up. Her eyes have fixed themselves, but she still gets cross eyed at times and her eyes are still shaky. Her eye muscles, as they are in every part of her body, are very weak. So the glasses are here to hopefully help that. We are supposed to wear them as much as possible. We normally get about six to eight hours a day in them. And honestly she does a lot better with them than I would ever imagine. When we first put them on on the mornings she does not like them and touches them repeatedly. But after the initial touching she really does not bother them, unless you leave her alone with them. Then they are off in a heartbeat. She knows the glasses are weird and she does not wear them unless we are around to watch her.

The glasses are new and I’m sure they are not the most comfortable things in the world. Her vision is adjusting to a new prescription and her unsteady eyes have to get used to seeing things completely different. Change is hard. It is hard for a young child and it is hard for a grown adult. As adults we learn to cope with change. It is the only sure thing out there, so we know our life will constantly be changing in some way or the other. Some people are better with change than others. I am one of those people who hate change with all my heart. I like order, routine and sameness. I literally could do the same thing everyday and be quite content. I understand that makes you world changers out there cringe to even read that last sentence, but that’s who I am.

This past year has had a lot of changes. Between moving, changing therapies, finding new doctors and new programs for Abigail, finding Jordan a new job, becoming a full- time mom, and trying to find a church home I am drained. That does not even include the little everyday routine shifts that naturally pop up with life and having small children. Life is crazy and I am starting to feel it. My body is tired, my head hurts and I am just worn out physically, emotionally, and spiritually.

As I watched Abigail touching her glasses this morning I could not help but be reminded I am just like her. Life bothers me sometimes. It is annoying and I want to throw in the towel and go hide in my bed all day and never see anyone. It would be a much easier life that way. But those glasses have to be worn. No matter the amount of times I have to get little smudgy fingerprints off them, or how many times Abigail pulls them off they have to go on and be worn. They are helping Abigail whether she wants them to or not. She does not understand, but I know she has to wear them for them to help her. And in my heart I know I have to continue to live life because every stress, every worry, every decision, every tear shed, and every change is making me stronger.

God is still working on me. He gave me this life to reflect His Son, and I cannot do that the way I am as a rotten, spoiled sinner. Life is shaping me to be more Christlike everyday. Is the process fun? No. I wish I could rip off all the burdens and struggles like Abigail does her glasses, but this is the life God has given me. Today it feels very heavy, but it is often because I try to carry my load all alone. I am stubborn and independent to my very core. But God made us to be dependent people relying fully on Him. And oh do I need Him today to carry my load, to pick me up, and to stand my feet on solid ground. So my prayer today is that if you, like me, feel like life is hard or even just annoying then may us seek God’s face and may we fully rely on God who can take every worry, fear, burden and tear and give us freedom and life more abundant then we ever thought possible. May you dear reader find this abundant life in Christ today!

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