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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Me and My Man

Today marks five years that I have been with this guy. We met five years ago as we were both hired to be resident assistants at our school. The volleyball court brought us together that year, and for some reason this popular, athletic boy picked this weird, dorky nobody to spend his forever with. I still do not understand it to this day, but I am thankful Jordan picked me.

We knew we would be married two months after we started dating. That might seem quick (and it was), but I had had a near death experience in the hospital and Jordan, my boyfriend of about 7 weeks, was there for every scary moment. I truly hated that weekend, but I am thankful because I think it made us both realize how we felt about one another. The next week we made a commitment to one another. We said the ‘L’ word that rhymes with dove, and we never looked back.

On June 18, 2013 Jordan proposed at the first place we had ever known the other existed. Back then we did not even know each other’s names and I was just a weird girl with an even weirder testimony, but it got his attention and he started noticing me. The day he got down on one knee and I said yes, God sent a rainbow in the sky. I truly believe it was a promise from God that He would be with this union. I know that is not what rainbows mean, but it was wonderful either way!

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Seven months later, the day we had been waiting on finally came. Wedding bells were ringing .on February 1, 2014 It had snowed just days before, but Saturday was beautiful! I really just floated through the morning of getting ready, talking with my bridesmaids, and taking pictures. I was nervous as anything as my dad led me down the aisle to meet this man I had already committed my life to months before. We stood in front of our family and friends to share this commitment with them.

After the reception, as we drove to Atlanta to spend the night in our hotel before catching an early plane, I felt awful. The wedding day should have been glorious and one of the best days of my life, but I was just relieved it was done. I felt guilty. We talked as we drove, and as always my man of wisdom reassured me. This day was not for us, it was for others to see what we had already done. In my heart I was already His and he was already mine that day we first talked about getting married. But today we made that commitment public and we celebrated with family and friends, and for that I was thankful because we had so many who cared about us and loved us.

When I committed to marry this man I knew he would be going into ministry. I wanted that for him and me. We were simply waiting for God to call us to a church so we could begin our ministry. We had been helping at a church together the whole time we dated and were engaged, and now we could do it together at our own place. Job opportunity after opportunity was opened to us. We have done countless interviews and attended churches the past few years. Yet, every door as been slammed in our face. Whether it was because we were not the right fit or because we felt like it was not where God was sending us, we have been told no an awful lot. Both of us have degrees in Christian Studies and both of us are called into ministry, yet we have not found that ministry yet. We pray God has a plan for us. We pray the right doors will open and we pray we will be ready and willing whenever that day comes. But in the mean time we are serving where God has us in whatever capacity we can.

Then six months into marriage God blessed us with Abigail. Our journey with her has been long and hard, but it has also been rewarding and joyful. Having a child rocks your marriage no matter what, but having a special needs child rocks it even harder. Most people I have met with special needs children are older or have multiple children and it is their second or third or later babies that have special needs. But we were hit with it from the get go. We knew nothing about kids so for us Abigail is our normal.

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But through it all I have a man that is committed to me. I have a husband who loves me and loves his little girl with all his heart. I have a man who is willing to lead us. He is my strong rock, my wise counselor and my listening ear. I would not be making it today without him. I would have given up a long time ago, but he pulls me through my pity parties and convinces me to keep running the race. I am usually the positive one, but just last night he laid beside me reminding me of all the good in our lives when all I could see was the bad.

We have only known each other for five years, but it feels like forever. Everyday I see little ways that we are becoming one. We are starting to think the same, and know what the other is thinking. We share some similar hobbies now, things I would have never done prior to knowing Jordan. We know what the other one likes and what they do not like. I cannot wait to get to know this man more and more as the years continue. He is my best friend, my love and my other half. I am thankful Jordan asked me to be his. I am thankful I have him. And I will always stand on that commitment we made all those years ago. He is my one and only, my forever and always. I could not imagine doing life without my man right beside me. Thanks for picking me Jordan Lidh!

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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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Second Round

We have not been through as much with Abigail as a typical special needs family would have been, medically speaking. Abigail is healthy and happy, and there is not a single thing wrong with her except she is behind developmentally. We have not had to go to the hospital with her. But in December 2015, when Abigail was just barely 7 months old, we went to Children’s hospital to get an MRI done. The doctors were concerned that the connections from the back of her brain were not functioning as they ought. Her vision was awful back then as she could only look up and not track objects.

I still remember that day well. Abigail had to fast, so we woke her up early to get one last feeding in thinking she may nap in the two plus hour trip to the hospital. Well she did not nap. We were in Atlanta traffic with a tired, hungry baby and two stressed out, worried parents. We arrived and somehow got directed through the parking deck and down to the radiology department with enough bags to spend four nights at the hospital (I tend to over prepare for things).

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Abigail getting ready to get her IV in. Yes, they give them tiny hospital robes to wear!

Abigail was still pretty happy for all she had already been through so that made us feel better. But then they came to put her IV in, and it quickly went downhill. Because she had not ate or drank her already tiny veins had shrunk even more and the experienced nurse tried and failed about three times before finding her vein. By the first poke, my drained nerves could not handle my crying infant. There was already too many people in the crowded room, so I just stepped outside before I yelled at the nurse and tried to pull her off my screaming child. I boo-hooed like a baby by myself in that hallway. I remember a sweet nurse walking by and handing me a tissue.

The nurses left the room and said we could tell her bye before they sedated her. By this time I was already ready to leave. But I put my big girl panties on and hugged Abigail goodbye, telling her it would all be okay. Jordan and I stood on either side of her as they put the sedation medicine in her IV. It took about 30 seconds for her to go under, and they wheeled her out saying they would not leave her side. We were left in an empty room, while our unconscious infant was wheeled into the screening room without us. Oh we both cried like babies!!

It took over an hour for them to do the test, so Jordan and I got out of there and went and had lunch to help us calm down. Then we came back and waited for them to bring her back. She came back on the gurney half asleep, but doing great. They let me pick her up and nurse her and I was the happiest mom to have my baby back in my arms. We soon left and returned home. The results came a few days later saying everything looked great and we had nothing to worry about.

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How they brought her back to us. It looks much worse than what it was, but she looked so small and pathetic as she was still under.

Then today our neurologist told us that she wants to schedule another MRI at Children’s within the next two months. She wants to see how Abigail’s brain is developing and make sure nothing new has shown up. But all I could think about is how awful that day almost two years ago was and I do not want to go back. We were naive then and did not realize how emotional the process would be, but now we know.

We know we could be going through a lot worse. We know Abigail will be fine. We know it is just general sedation and a quick MRI. We know the Children’s staff will be great with her. But we also know it will be a hard day. It will be a day full of tears for everyone. And we know we do not want to see a two year old experiencing two MRIs in her lifetime. But this is what is best for her, and the only way the doctor knows the proceed. So reluctantly we will take out tired, hungry toddler to radiology whenever the date is set and we will see if they can hopefully find us some much wanted answers! But even if this test yet again reveals nothing, we will be thankful for Abigail’s health, progress and that she is apart of our little family!!

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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What Matters

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My family matters to me, and it always will!

A fellow mom at therapy whose daughter is diagnosed with Angelman’s syndrome once said, “The things that used to matter just don’t anymore.” That one line in the midst of our conversation just stuck with me. “The things that used to matter just don’t anymore.” Of course I am not as far along in the process as she is because her daughter is going on eight years old and Abigail is only two but already in these two years I have seen differences in myself because of Abigail.

The biggest thing I have noticed is that I have found my voice. I have always been opinionated and stubborn but I am also very quiet and reserved, so while I have lots of opinions and comments I would never voice them. But with having Abigail (and being married for three years to a man who is also opinionated) has helped me step out of my bubble a lot! I have learned to have a voice. With a child who sees as many doctors, specialists and therapists as Abigail does you have to be adamant along the way about what your child does or does not need.

I have had many phone conversations while setting up appointments and confirming Abigail’s test results where I have to be firm with the person on the other end of the line. It can get so frustrating trying to connect so many doctors together, making one appointment after another, or dealing with insurance companies. Just this week I have been in the phone multiple times making phone calls to many people in the genetics lab trying to find out what is going on with Abigail’s testing. But the line I use so often is, ‘the squeaky wheel is the one that gets fixed.’ It is a headache and I hate being rude, but we have learned that if you do not keep on top of things you get lost in the system quickly. You have to make yourself known to get what you need done and I am learning to be braver and make sure we get what we need.

Things that used to matter just do not anymore. I see this is true as I know our life is different than most. I deal with things that should be simple but having a baby who does not move makes life more interesting sometimes. To go to the library just to drop off books and get new ones is a workout. We went the other day in the pouring rain (not sure what I was thinking). But I had to run around get the umbrella, get out the stroller and try to keep it dry all while getting Abigail out of her car seat. Then I had to buckle her into the stroller, grab the books and make a mad dash into the library all while trying to keep us all dry. It was a sight I am sure, but life for us. My favorite is when we go to a new doctor or we have a different nurse and they ask me to stand Abigail on the scale to get her weight. I just start nodding my head and say that will not work. They seem so confused, but thankfully right now we just use the baby scale. It is just the tiny things that make life a little different for us. We cannot do things the same ways a normal family with a toddler could.

It makes me wonder what things in life will not matter, or what will be our normal as Abigail grows and gets bigger. Will we be stared at from across the restaurant because of our daughter in her wheelchair, or the ten year old who cannot feed herself? What questions will people ask us as we are out and about with our family? What matters to me right now, and will those things matter five years from now? As a parent of a child with special needs you learn a new normal to life. Any other children we may have in the future will be brought into our normal. I want all my children to know what really matters in this world. It is not how popular you are, how much money sits in a bank, or how you compare to the people down the road. What matters, and what will always matter, is what is eternal. The things of this world will fade. But your relationship with God and how you choose to live for Him will be eternal. I want my children to be servants who love God and love people. I want them to have fun and be innocent as long as possible. I want them to respect others and find joy in the small things. Oh, there are so many dreams for my children, but I want them to understand no matter what our normal may be they are loved, not only by Mommy and Daddy, but by God, their Father. What things do you want to matter to your children as they grow older?

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