Perfectly Imperfect

Dying without death....sounds weird, huh? That's what happens when your child, the person you love more than life itself, is diagnosed with something no one has ever heard of. That's the feeling that you endure for months as you go from doctor to doctor and hear over and over what your child is incapable of EVER doing. Perfectly imperfect, doesn't sound like they go together, but I'm here to tell you they do. It perfectly describes us as God sees us and how I want others to see my daughter.

The day Family Adoption Services placed Tyley Sue in my arms I knew why I wanted and desired her for so long. She was perfect in every way. She was sleeping so soundly as Tyler and I gazed at her beautiful skin, dark hair, and tiny fingers and toes. As the ladies in the agency took pictures and I look back on them, you can just see the love oozing out of us. We were elated and it felt amazing to finally hold the precious cargo that we had prayed over for years. I labored for my baby girl for years. It's true the saying about "growing in my heart, not under". It's painful, it's a long journey, but it is oh-so worth it. Life went on after we arrived home, friends and family poured blessings on us with gifts, food, and prayer. We moved, built a new house, and started in on the doctor's appointments that still haven't ended. We knew early on-around 3 months, that Tyley wasn't progressing as she should, but we just kept on praying and listening to our doctor who told us it was okay to be "a little" behind. As the months passed on, we realized Tyley was falling more and more behind. When she turned 2 we found out that her head circumference hadn't changed since her 18 month doctor appointment. That's when our doctor and we realized that something was not right. The following months held multiple visits with specialists and months of waiting for test results.

We were prepared for Angelman's syndrome; that's what our geneticist told us he thought she had based on her presentation.  I was devastated at the thought of it as the statistics read that it only occurs to about 1 in 20,000. I kept thinking, "1 in 20,000....I'm never going to know anyone else who has this, it's going to be so hard." I will be honest here and tell you, I couldn't even pray during this time. I didn't know what to ask for, what to say, how to be thankful, how to even pretend that I knew what I even wanted, and I sure wasn't able to pray for His will yet. It was a painful 2 months as we waited on her results. In January 2014 our doctor called and said that they had the results from Tyley's test and that she did have an abnormal result. He went on to explain that she had a deletion of 11p14.1. I immediately asked what that was to which he responded "we don't have a name for it because it's so rare. You can try and Google it, but you won't find anything." Who the heck can't find what they need on Google?? You can find everything from long lost family members, to recipes, to homework questions, to answers for all your routine medical questions on Google. I
had to look for myself and he was right. After hours of typing it in every way possible, I found one article on a pub-med website that my sister in law had access to for me and sent me. As I read the one article based on a doctors research I realized I was alone. More alone than I ever would have been with Angelman's syndrome. Dr. Lose was right when he said, there isn't anyone else with this. This article confirmed 4 other cases, none of which were exactly like the deletion Tyley has. So I did what I had to do and sent the doctors who had written the article an email asking for help.

I got a response from Dr. Han at the National Institute of Health in Maryland. She went on to explain to me that Tyley is super unique and that she really is the only one that they are aware of with this exact deletion. At this point my thoughts go back to a woman, growing my child in her womb, giving this child up for adoption, and God choosing Tyler and I as her parents. Us as the parents to a child who has a "disease" that no one else has, and that no doctor has heard of. Why? What made God think we were capable? Why did he choose a young couple in Alabama to guide, parent, and love one of his most unique creations? Want to know my answer? I have no stinkin' idea!! All I know is that He KNEW I could love her like no other & that I would fight for her. He knew that I would do my best to provide, and that I would do my best to trust Him to guide us.

Dr. Han went on to tell us that Tyley is the hope for a cure. The missing gene, BDNF, is responsible for brain growth and development (Tyley's is missing, hence the small head); and they took Tyley's stem cells and are hoping to change those cells into the missing brain cells to replace them and hopefully increase the brain growth. Now, that's pretty amazing. My baby is their protype for a cure. Not many people can say that :)

 We are really just getting started, although I feel like I've run a non-stop marathon over the past year as we have went from doctor to doctor looking for answers. I would be lying if I told you that I have this figured out, that I am at 100% peace, or that I even know what to pray for now. My prayers in the beginning were to take this away. To make her "normal". My prayers now are this - if healing is your plan, use it for your glory, if she's always going to be delayed and have medical problems with her brain, heart, body, speech, etc. USE IT FOR YOUR GLORY! I would be so sad at the end of my life to look back at this time and not see God use our story to inspire and save others. I want more than anything for my baby to be healed, but I want God to use all of us and Tyley to bring others to a new level in their faith. When he created my perfectly imperfect child through another woman He envisioned Tyler and I. The plan for this little girl was to land in my arms for a reason. I don't believe for a minute that it has anything to do with her medical needs. I believe with everything in me that God has a plan for her life that is bigger than I can imagine.

Finding out your child has special needs and hearing multiple doctors say "Tyley will most likely only be able to learn basic communication, to feed herself, and possible potty train, and will only do these things with extensive therapy" is heart wrenching. I still have so many fears and doubts about the future. The idea of doctors visits and therapy visits 3 times a week for the rest of our lives seems unbelievably overwhelming. However, I just keep leaning on God and my family to get through each day. Some days are better than others. Sometimes I feel like I totally rock being a special needs mom, wife, employee, and friend. Other times, I feel like I'm not even capable of getting out of bed. Some days the thoughts of Tyley's health and need absolutely CONSUME me. Other days I'm perfectly fine. When people tell us over and over all the things Tyley can't do, I try to focus on the things she can. My baby is beautiful, her personality is amazing, she loves hard, she loves to cuddle and be sung to. She is unique and she is mine.


So, where are we now? How does all this tie into the last post about North Carolina?

After finding out more details of Tyley's deletion and the effects it's having on her brain and heart, I felt God remove the peace about moving to North Carolina. After praying about it and seeking godly counsel from some of our dearest friends, I talked to Tyler and let him know that I had a check in my spirit about it. After we both prayed about it, we felt certain that God was calling us to be still. Some may say we were just crazy to begin with, others may say we got scared and chickened out; we know that God changed the direction should head. Just like Philip on his way to Gaza-God called him to Gaza, but on the way he met the Ethiopian once he had done his job there-poof- no more Gaza! Or like Abraham, God called him to sacrifice his son. Abraham was faithful and obedient, willing to give kill his son, but God stopped him right as he was about to follow through. We see though that his heart was pure and willing to do whatever God asked. I feel like these two examples were how God spoke to me. We were willing to be obedient to God's call, even though it was hard and scary. We were starting on the journey, but God changed our destination. For now, we feel God is calling us to serve and minister where we can be home and allow our friends and family to minister to us during such a hard time in our lives. We are blessed to be home and surrounded by friends and family who love and support us & we look forward to seeing what ministry opportunity God has for us here.

During EEG last week at Le Bonheur Children's Hospital

See, perfectly imperfect :)

I will follow...kicking and screaming

Tyler's call into ministry several years ago has brought our family many good times, good friends, and heartache. Ministry is hard. No matter what anyone may tell you, it's hard, it hurts, and it just downright sucks sometimes. When Tyler was called into ministry, we talked to our pastor at the time, Michael Mason, and he told Tyler "if you can do anything else, I mean anything else, and be happy and have peace-DO IT" He knew firsthand how exhausting and heartbreaking ministry could be at times. However, doing the work that God has called you to do brings peace and joy-not happiness, but joy- that no other job could bring.

After serving at Mt. View we moved to Family Baptist Church in November 2012. Our time served at Family has been so difficult. Finding out Tyley has some pretty extreme medical issues, getting pregnant and having a baby who was in and out of the hospital for the first 2 months of his life, and being called to plant a church 9 hours away in North Carolina are just a few of the things God asked us to go through the past year and a half. Our church family was wonderful and supportive during our time there, but to be honest, there's not a single person who could really identify with what we were going through.

A change occurred in the direction of our ministry when Tyler felt that God was calling him to plant a church in Greensboro, North Carolina. He didn't even tell me at first what God was doing and stirring in his heart. He felt specifically that God wasn't just calling him to plant a church, but that he was calling him to plant a church in a specific city, nine hours away. As Tyler prayed about it and sought God's confirmation, more and more events occurred showing Tyler God was in it. As he prepared for his youth service one night, the leader of his worship group was preparing and getting the equipment ready. As Tyler sat in the back of the room, he thought "wouldn't it be cool to plant a church with this guy?!" He told me that as he thought that he immediately tried to "un-think" it. He was so concerned with not getting overly excited or ahead of himself and being sure that it was God leading him and not him leading him. As he told me this story a week later, he went on to say that after the service was over Zach, the worship leader, came up to him and said that he felt God was calling him to start something new, something fresh, and that he knew the place was North Carolina. Tyler was shocked, but didn't say a word to Zach in that moment. After telling me a week later, and praying over it, Tyler talked to Zach and he began to pray as well.

Over the next several weeks, I felt like I was slowly dying inside. Just thinking about moving was tearing my heart out. I love my home, my parents, my family, my friends, and to think about moving away from it all in the midst of my heartache over Tyley was just about too much. I was angry, bitter, confused, and hurt. I continued to pray that God would comfort me, show Tyler he was CRAZY ( I really did pray that!) and let us move on from this idea. But, he didn't. He instead placed a peace inside of me that I couldn't understand and I began to see him work out the details of my job-by allowing me a position to work from home and maintain our income, he gave a peace to my mom and dad who were really struggling with the idea of us leaving, and he gave us two sets of friends who were seriously praying about going as well. He didn't just come right out and speak to me, he didn't send a burning bush or a messenger, he didn't give me a word from the bible, it was just a quiet peace. Nothing big, nothing spectacular, nothing tangible. No one else could see it, there was no evidence pointing to it. That's what makes it faith. That's what makes it hard.

I finally told Tyler that I had not had any big revelation, that nothing had been spoken to me from God, but that I knew God appointed my him, as my husband & as the leader of our household and I trusted him and his vision from the Lord. That's all I had, and that's what I have been called to as his wife.  As I surrendered and stopped fighting, God showed me some amazing things. He showed me that he cared about the little things. He cared enough to work out the details of the things we prayed over. He cared enough to show me the about the opportunities in the medical community we would be moving to for Tyley. He cared enough to comfort me and bring me a peace that only He could do.

In the few days that followed, we started making plans to move. Those plans included Tyler talking to his pastor and letting him know of the desire and plan for his life. Family Baptist supported his decision as he stepped down as a youth pastor and transitioned into an associate role to allow him to focus on the steps necessary to planting a church. I talked with my company and they were supportive in allowing me the chance to work from home in North Caroline-where I could be home with my kids and still maintain our insurance and income. We told friends and family, as well as our entire church family. I started looking at houses and Tyler went on a weekend trip to visit the area. He also paid and attended classes with the ARC to begin the process.

We were ALL IN. We decided to give everything we had, in full submission, to our Lord. It was honestly the most freeing feeling ever. The fears and doubts eased up tremendously, and more than ever I felt at peace about giving God everything I had and holding nothing back-not my home, my job, my money, my family, my plans; nothing was off limits anymore. On a Sunday morning after this, we sang "I surrender all" and I looked at Tyler with tears in my eyes and said to him "we really do". It was amazing to see God take something so scary and uncertain and have him bring me peace and excitement about it.

The next few weeks that followed brought some changes to our lives again though, and God changed the desires of our hearts and our plans for our future.

3 years later....

My last post was about our gotcha day with the newest love of my life, Tyley Sue. The past 3 years have been a whirlwind and I've not blogged because I was living, enjoying, and soaking it all up. Soaking up all of the little moments I could. The past 3 years have brought our family many changes! I am hoping to start blogging regularly again to help me get my feelings down on paper. I will start with an overview today and then dig in a little deeper to big moments in future posts.

1. Ministry: Tyler was the student pastor at Mt. View Baptist Church until November 2012. We moved to Family Baptist Church where he served until just last week. The year and a half that we served at Family brought a lot of changes in our family that we couldn't have foreseen and it made that year of ministry a little, okay a lot, more difficult than we expected. However, we made great friends, grew in our relationship with the Lord and our relationship with each other, and served our church and community in the best way we could. We are moving on now to Tyler's home church where we are just sitting and waiting. Sometimes God asks you to be still for a while before He reveals the next step in your life to you and I believe that's where we are at right now. We were clearly told to plant a church a few months ago (I will get into those details in a separate post) but now we feel just a certain that we are being told to take care of our family first. So we are waiting on God's timing, which as we've seen in the past, is always perfect.

2. Elijah Ray: So, God's plan was for me to have another child after all! On October 1, 2013 Elijah Ray Jones was born after the miracle pregnancy experienced by ME! The girl who was told she wouldn't carry a child, carried a child! God answered our prayers after our prayers changed. For years I wanted to experience carrying a child, feeling him move inside of me, knowing I was nurturing and growing a baby. I had two close friends that came and told us they were pregnant, and then there I was again, feeling the desire to be pregnant. So, I prayed that God would take away my desire to carry a child unless that was His plan for me. Four weeks later, I took a pregnancy test and say a + sign come up. I'm telling you, I lost it. I wasn't sure if I was even seeing right, so I took it out to Tyler and he hit his knees and began praying, thanking God for our miracle. I'll never forget standing in our living room, at the edge of our hallway seeing my husband kneeling at the couch in praise and thankfulness for the answer to our years of prayers. God continues to prove to us that He is FOR US. That He loves us. That He will not only supply our needs, but our DESIRES too. My son is a testimony to answered prayers, just like my daughter :)

3. Special Needs: I never thought I would be a special needs mom. If you would have told me that, I would have never believed it. I would have doubted how strong I can be. I would have worried about the details. Yet here I am. The mother to a special needs daughter. A daughter that is so unique and so special that doctors don't even have a name for what she has. A daughter that has stolen the hearts of most who have taken the time to know her. I'm her momma. Her biggest fan. She has taught me so much in her nearly 3 years here. Our family has been changed by her and I wouldn't have it any other way. Does that mean that I don't hope for the best or pray for a miracle still? No. I absolutely pray that God will heal her, but I also pray that He will use her and us regardless of His plan. If it's to heal, let it bring Him glory. If it's not, let it bring Him glory. No matter the road ahead of us, my prayer is for it to touch others and bring them to a relationship with Christ.

I will be digging into these life changing events in future posts, because as you can tell it's too much for one little post :)

Tyley Sue Jones

So, I'm a horrible blogger, haven't posted in a long time, but I have excellent excuses. Let me recap what's happened in the past 3 months. We got an offer on our house, got a call from the adoption agency, got our little girl 2 days later, moved into my grandmother's old house 2 weeks later, got the permit to build our new home,  and it's been a whirlwind since then! So now I will expand a little bit on the actual call from the agency!

We actually got a call on a Tuesday June 4 from Susan at our agency. She asked for us to come into the office on Thursday at 1 pm. I just said okay and hung up. Then I panicked because I had no idea why they were calling us in. I was going through every possible scenario. None of which included a baby! So, I thought, if there is a baby they will want me to bring the carseat, so I called back and asked if I should bring anything. They said no, just to come on in. Needless to say, the next two days were the longest ever. Thursday morning I actually worked until about 10:30, then we headed to Birmingham. Once we arrived at the agency(nearly 30 minutes early) we sat in the lobby waiting. Almost immediately we heard a baby crying. Tyler looked at me, and said "There IS a baby here". I replied "Yeah, but not OUR baby, there is no way, because we didn't bring a carseat!" So we waited a few more minutes, and Rick took us to his office. He asked about our house, our jobs, and all the while I was thinking, "is this really what they called us down here for?!" Then Rick told us there was a situation, a birth mother had come in, with no prenatal care and had already delivered a baby. At this point, he said and "the baby is already here". Still, not believing we would hold our baby in our arms that day, I said "Like here? Like the baby I hear crying kind of here???" Without speaking a word, our social worker walked in with the most beautiful baby girl I've ever laid eyes on. As I sit here and write this, I have tears coming to my eyes remembering the sight of my husband holding her for the first time. All he could say is "she's gorgeous, she's gorgeous, she's gorgeous!" Still in disbelief, and shock, I said " I didn't even bring a carseat!" I had so many things going through my head, but I can't remember now what they were! I was just so shocked, and still am sometimes!! We were at the agency about an hour or so longer, signed some paperwork, got some history on the birthmother, and they sent us home with a carseat and diaper bag with enough things to get through the night.

On the way home I sat in the backseat with Tyley Sue and just looked at her the whole way home. I of course called my mom, dad, nana, and Tyler called his family too .We sent immediate pictures of her out on our cell phones. When I called my mom and told her that I had Tyley Sue in the care with me she about fell apart on me. I was in a weird calm state through all of this, through all of the phone calls. My grandmother didn't believe me at first, I had to tell her 3 times before she believed it all. My mom and sister immediately went shopping for us, I told them I needed bows, lots of hairbows because she had a head full of hair! The hour and a half drive home seemed longer because I couldn't wait to get her out of the carseat and hold her again!

Once we arrived home, we had about 10 minutes of peace and quiet with her before our family started to arrive. Around 4:00 my parents came over, then his, then aunts and uncles, and friends. The last bit of company left around 11:00 that night. Our family and friends blessed us so much that day alone with gifts and neccessities that we didn't have yet. With my house filled with  boxes preparing to move, all of the added baby stuff and people about sent me over the edge with my OCD like behavior! The next day we continued to have more company coming over to share our joy with us. Later that afternoon, I had a few moments of quiet with just Tyler and Tyley Sue, it was that moment that a flood of emotion hit. I cried for the first time, and it wouldn't stop. I sobbed. I was so overwhelmed, so joyus, so scared, so unprepared, so happy, so many things all at once. I prayed, and was so unbelievably thankful for Tyley. My God had come through in an unimaginably good way. His timing was perfect, and I am so glad I had to wait. All of the tears and heart ache were suddenly sooooo worth it. He had been knitting together a precious baby girl in another woman's womb for ME!

Since then we have written back and forth with the birthmother, I have been able to thank her for her unselfish act of love. She has been able to tell Tyley Sue about herself and her biological father. I am saving all of the letters for Tyley to look at one day when she is ready. We have been to doctors appointments, and our friends and family have had 4 baby showers for us! We have been so blessed with great friends and family who have showered us with more than we need for Tyley Sue. It has been an amazing 3 months. Tyley weight 7lb. 2oz. and was 19 inches long when she was born on June 3, 2011. Her last weight at the doctor about 2 weeks ago was 9 lb. 15 oz. and 22 inches long. She is now cooing, and smiling a lot. She has a cute little personality starting to develop. She is my little blessing. Her daddy's little girl. She couldn't be more perfect!!