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!!

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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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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The Simple Life

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We just went on a short trip to Chattanooga, Tennessee with my parents. It was just the three of us and them, but we had a great getaway. Nana and Poppa took Abigail swimming. We visited the park and rode the carousel, walked the foot bridge and got ice cream. Then we took a trip to the aquarium and the zoo. It was a quick, but full trip and we all had fun. But this trip, as going out to any place, always reminds me that my baby girl is not normal.

Abigail could care less about the fish and the animals. She was more interested in eating her food and hugging whoever was carrying her at the moment. She is a very social baby, and loves giving out those precious hugs. As much as Abigail has improved at noticing her environment and being aware of things around her, she still never even noticed that we were surrounded by new creatures and that we were in a new place. She had her family with her and that is all she needed. It is frustrating at times that we go places and she has no idea where we are, or what is going on around her, but then you see that little smile spread across her face and you realize that she is enjoying just being with us.

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At the zoo with Nana and Poppa!

So often I wish that we could do fun things with Abigail that she would enjoy. I wished while we were at the zoo to see her eyes light up as the birds and monkeys wandered up to the enclosure to see her. I wish she could stand up and run around so we would have to catch up to her. I wish she could communicate her excitement when that giant fish swam right by her hand. I want to be able to take her places like the local splash pad, and the children’s museums and things like that. I want to be able to cook with her and run around catching bubbles and drawing on the sidewalk. Oh I want these precious memories. My mama heart is often sad because I feel like Abigail is missing out on so much.

But then I see her smile as she gives me the biggest and best hug of my life. I see her excitement as I pull out her scooter so she can ride around the house. I watch her eyes light up when Daddy comes home from work. I hear her squeals of laughter when we take our daily stroller rides. And I watch her splash away as we float around the pool. No, the things we do might not be exciting in the world’s eyes. No, the activities Abigail enjoys may not be normal toddler activities. And no, we will win no award for an adventurous life. But our simple little life is good! We are happy and have a little girl who is so joyful, and for that I am thankful.

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That smile is a ray of sunshine!

Maybe one day we will be able to do these things with Abigail, but I am thankful for today. I am thankful for a little simple getaway with my parents. I am thankful for my simple days I spend with my little girl. I am thankful for her joy in the small things. I am thankful that I have these moments to treasure in my heart forever. And I am ever thankful for a little girl who is making her own path in this world.

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The Game of Life

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Our family Cribbage board

We are a card playing family, and Cribbage has always been a favorite. I grew up playing Cribbage and now when I stay over at my parents’ house for a long weekend we always try to get a game or two in. If you do not know how to play Cribbage that’s okay. This post is not about that. Basically, all you need to understand is that those pegs pictured are what you count with. You obviously want to have the most points, and have your pegs in the lead. A lot of times though you get dealt not so great hands and your poor pegs lag further and further behind everyone else’s. In Cribbage you can get so far behind the winner you get skunked. It’s a very technical term. Basically, if you lose you don’t want to lose so bad you get skunked. See, it’s really a rather fun family game! And two fun facts about this particular Cribbage board: 1.) my brother made this by hand (pegs and all) for my mom’s birthday one year, so it’s a very special board. 2.) See those words my mom wrote on the board, “Heater’s Curve.” It is supposed to be my name not Heater. This is the particular spot on the board I always began to lose, no matter how far I was in the lead. It became the family joke that when I was approaching this curve they knew I was going to start losing, so Mom nicknamed it Heather’s Curve, or at least she thought she did. Yes, my own mother misspelled my name, so now it’s affectionately called, “Heater’s Curve.”

The game of Cribbage, and many games in fact, is just like life. Sometimes you get dealt great hands that make you feel good and help you win, and sometimes you get awful hands that do not move you ahead at all. You feel like you are stuck in quicksand of life, and you will never catch up to the people ahead of you. This is often how being a special needs parent feels like. Every time your child does something good or conquers a task you realize that your friend’s baby did that six months or two years ago. As other children progress around you, you feel as if you are chugging as you hard as can and still are not able to gain any ground.

I am so excited, and so is everyone else because Abigail loves to give hugs now! It is precious and makes you feel extra loved when she wraps those little arms so tightly around your neck. She is truly the best hugger! She is beginning to eat better and better and even attempting to eat on her own in small ways. She is rolling from side to side and trying to sit up and move so much more. There are signs of progress everywhere. But right when we are gaining so much progress, I took her to the eye doctor because we have seen some small concerns with her eyes twitching, not focusing, and going cross-eyed. Well it is a good thing I took her because her muscles in her eyes are very weak. While the eye itself is as healthy as can be, the muscles are not controlling her eyes properly. So, soon Abigail will begin wearing glasses to try to strengthen those muscles. She has four months in glasses, and then if there is no progress the next step is surgery.

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When we feel like we are gaining ground with negative genetic testing and physical progress, we are hit with this reality. Our little girl may be faced with eye surgery at the end of the year. Oh, we are praying these glasses are miracle glasses!! But in our two-year journey we have seen this over and over. We gain some ground and are reassured everything will be okay and we will overcome anything, and then we are told she has very low muscle tone, it might be a genetic problem, there are still no answers, or that surgery may be the only solution. The life of a special needs parent is one big rollercoaster of emotion, filled with excitement, worry, and the unknown.

Through it all though I am thankful that life is not just one big game. We are not pawns being pushed around a board. Through it all God has a purpose for each and every person. He knows what we are going through, and He has a beautiful plan unfolding everyday. Is it frustrating? YES. Is it lonely? YES. Is it what I would choose? No. But it is still a beautiful plan, and I trust that with all my heart. In the end, I am thankful for this plan, this path of life God has set us on. It is making me a better person, a more trusting person. The last two years has changed me, and giving me a whole new perspective on life. Do I want this for my little girl? Never in a million years, but this is the life God has blessed us with and we will take each day and be thankful for the gift it is. We have so much to be thankful for, and I will not ever forget that!

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Our happy little blessing!