My God Story on Prayer

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

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

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

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

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

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

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!!

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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20 Facts about Our Family

I have been blogging for over a year now, and I thought it was time to write a little on the lighter side tonight. Here are some random facts about our family of three. Thanks for for your support and for reading along!!

1) Our last name always throws people off. I am forever spelling it for people over the phone. L-I-D as in David- H as in Henry. I had no clue how to say it when I met Jordan in college. I had to ask him. I always remembered it because as my husband Jordan would lead me. Jordan sometimes will tell people it’s spelled L-E-E-D. It’s a tough one for only being four letters. But we answer to anything, mostly we are the ‘Lids’ and that’s ok.

2) We rely a lot on our extended family. We are blessed to have two families that truly love and support us 100%. They help us out with Abigail by watching her, loving on her and providing for any and all needs she may have. They provide a roof for our head and often treat us to dinners or new clothes. I tell Jordan all the time how spoiled we are. But we are very thankful we have great families that love us and want to take care of us because so often we wouldn’t be able to do it alone.

3) We would love to own a dog. I think we would both lean to a lab of some kind. But the house we live in has no yard, and I couldn’t do that to any dog much less a bigger dog. But maybe one day because having a dog would be so fun and I think Abigail would grow to love him even if she would be quaking in fright at the beginning.

4) One of mine and Jordan’s dream anniversary spots is Washington DC. We truly are simply and nerds at heart. But we went on a trip to the capital just months after we were married with a group from our college and we loved it!! We would love to go
back one anniversary and explore on our own.

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5) I like to sleep in and recently Abigail’s schedule has changed so she sleeps in until 9 most mornings and as long as Abigail is sleeping in I am too. I know people say you should wake up before your kids and get things done or have me time, but I prefer pillow time.

6) I recently got a library card in our new county. I LOVE to read and this is a whole new world of books to read. I found I love historical fiction, and now I stay up late reading. Maybe that’s why I like to sleep in.

7) I secretly love trying to rock Abigail asleep. She has never been a cuddly baby. She hated being rocked and being placed in a carrier even as a new born. But now I try to keep her up later so I can rock her to sleep and hold her for just a minute before putting her in her crib.

8) Abigail is getting huge!! She is outgrowing her crib, her seats, and her clothes. She is heavy and I cannot carry her as long as I used to. She would be so tall if she would stand up. It’s hard to believe how big she has gotten.

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9) We eat the same thing almost everyday. It’s just easier because I l ow what I like and I know what Abigail likes. She loves fruit and carbs and so do I. I literally eat a whole box of Suddenly Salad all by myself at lunch. Yes, carbs are my friends. I’ve considered dieting many times, but you only live once and I love food!! I don’t think I’m disciplined enough to diet.

10) I have never been a runner. In college I tried to ‘run’ in the evenings. I have started the Couch to 5K about 4 times, and never finished. Running just isn’t my thing. But I love to walk. I like my walking buddy and we spend a lot of time walking in the park and in our neighborhood.

11) Speaking of walking – I usually walk so I can get miles and catch Pokémon on Pokémon Go. My husband got me hooked when the app first came out last year. And I haven’t looked back. I love playing!!! And the best part is that it’s like mine and Jordan’s thing to do. We have had many a date night going around and catching Pokémon. And it’s a nice family outing where we can get out and do something together. So call us nerds, but it’s one of my favorite things to do.

12) Jordan and I always try to spend time with just us everyday. It’s tough because he is on a weird work schedule. He works retail and his hours change from day to day and he always has different days off. I can never keep up with it. But we like to watch our tv shows, movies, play board games, and play minecraft. Yes, I did say monecraft. It’s another great game to play. Our land is called ‘The Loveshack.’ Jordan would kill me if he knew I told you all that, but I named it for us. I love spending time side by side building a fantasy world and killing zombies with him.

13) Sometimes I don’t do all Abigail’s exercises with her. Sometimes I forget. Sometimes I just want to snuggle with her. But our favorite thing to do is in the evening we lay down side by side and we just laugh and tickle and snuggle. It’s wonderful and always a highlight of my day!!

14) I’ve always wanted to be an elementary school librarian. In college God called me to ministry and I changed my major to Christian Studies. I then got married and we had Abigail. I now stay at home full-time with her. I know I am called to ministry and I am searching for what God would have me to do. But for now my ministry is to our daughter and the families we come in contact with everyday.

15) I love that my husband literally beams when people say Abigail looks like him. He eats it up!!! He is the best Daddy and he loves that girl so much.  His love for her makes me happy. Because I know she will need her daddy as she grows!

16) One of my dreams would be to adopt a special needs child. I don’t know if it will ever happen, but we are both open to adoption and I know children with special needs need to be loved too. Maybe one day my dream will be a reality but for now I will keep learning all I can about caring for special needs children.

17) My favorite room in the house has always been the bathroom. It might be a weird pick, but I take my showers at night at the very end of the day. It’s just my time to unwind and not have to worry about a single thing.

18) My favorite thing about being married is that I get to live with my best friend. I love that even after just 3.5 years of marriage we are pretty good at knowing what the other one is thinking and feeling. And we always think the same way about big decisions (or at least we have so far). Is our marriage perfect? Not by any means, but we know we are together no matter what and I am thankful to live life with my best friend!!

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19) Yes, we would love to have more children. People ask us that a lot. Of course, we are also scared to have more. We have no clue what Abigail’s quality of life will be and we are scared to have another child like Abigail or in even worse condition than she is. We have been told the chances of us having another child with special needs is slim to none, but obviously no one can guaranty anything. But maybe when the time is right, God will bless us with a second child!!

20) I love my family!! Family is very important to me. I think God designed families to honor Him and he used a family to bring salvation to the world. I am thankful my husband picked me five years ago. I am thankful we had our beautiful little girl ,and I can’t wait to see what God has in store for our family as we continue to grow in the years to come!!

 

Parenting a Special Needs Child

“I have to deal with a lot being a special needs parent, but it’s also apart of parenting a child. Many people have told me that my strength is beyond their comprehension. We are often applauded for our care of him. I do appreciate that people realize we are working hard, but I don’t want to be a martyr because I am caring for my son. Any parent faced with our situation would take the steps they need to make sure their child has the best possible life. When you are put in this position, you have to dig deep and find a way to muster through the struggles. There are many days I feel alone, and frustrated and that I cry. You can absolutely tell me am a great mom, but I’d rather you say it was because he was a happy, polite, and sweet child.”

This is an excerpt from one of Katie Paulson’s latest blog posts, “I’m an Autism Mom: 5 Things you Need to Know about My Journey.” She is a fellow special needs blogger mom, and you can find her here: withoutacrystalball.com I loved this passage because I can so clearly resonate with it. A lot of people tell me what a great mom I am or how patient I am with Abigail. But I am really not. I get frustrated with her just as any mother gets frustrated with their child. She still fights her afternoon naps, and makes big messes. She whines when she doesn’t get her way and she pulls my hair and hurts me sometimes. I am no different than any other mother out there. I just have a special needs child, so this is our normal. You learn to adapt, and work around what your child needs and what he or she can or cannot do.

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This is Abigail ‘napping.’ She has learned to roll over in her crib and now nap time is the new play time.

I am not trying to raise my life as a symbol of victory for all special needs parents. This is just my life, and I enjoy sharing it with others. When Abigail was born we had no idea anything was wrong with her. She gave us our first scare when she was just a few hours old, but the doctors said that it was nothing and they sent us home after two days. We figured she was healthy, and we did not think twice about it. We were just trying to figure out life with a baby, and enjoying our new bundle of joy. We were not prepared for having a special needs baby. But because of her needs slowly unfolding over time, we took each piece of news in slowly. Each time we visited a new doctor or received a new test result we were able to digest slowly what was going on with Abigail. This is our life. I would not choose this for our daughter, but she is perfect the way she is.

I am not a special mother in anyway. I am not a more patient person. I am not more loving or more caring than anyone else. In many ways I am less patient and a lot meaner than I used to be. I simply am helping my daughter live her life to the best of her ability. Any mother who found out she had a special needs child would love their child and do the best they can do. That is all I do. Most days I feel like a big failure. I feel like there was so much more I could have done in those hours we had together. But I do what I can, and I try to do better the day after.

I am simply a mom to a special needs child. I love my life, and my little girl with all my heart. I would not have chosen this life for me or for Abigail, but it is our life. It is nothing extraordinary; it is simply life with a child with severe developmental delays. I appreciate every kind word spoken on our behalf, but I know any parent of a special needs child just wants a friend to lean on. We need a team behind us that is rallying for us and for our child. We need you to love our child no matter how they may look or act in any given situation. We need you to understand that this life is not what we would have chosen, but it is the life we have and we are simply doing what we need to do for our child. We are not anything special, and we surely do not have any more energy, patience, or love than any other person. We just have a child who is a little different than others and who is unwrapping their gifts at a little different speed than others. So please if you see a special needs parent, don’t look at us in pity or in awe. Please, see us for who we are, parents just like you, raising a child to be the best they can be.

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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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