You know there are some days where you feel like you have it all figured out, like you have "arrived"; and then there are days where you think life is impossible and you can't win for losing. Evidently,some time back when I wrote this post here, I thought I had "arrived" at all of the answers and just really "got" it all. Now, here I am today, reading over the things I "learned" and I'm realizing that I'm learning them all over again in new trials and circumstances. So, I am going to update my list a bit; still using some of the same basic ideas from my post a few years back and reflect on what I have learned recently and what God is teaching me at this time in my life.
1. God is teaching, growing, encouraging, trying, and loving us all-EVERYDAY. We will never "arrive" on this side of eternity. Through our adoption process, I learned so much about myself and my faith grew tremendously. I saw God at work and it was amazing to rely on Him and trust Him every step of the way. From the darkest days in the process to one of the greatest days of my life, He was there.
2. God sometimes allows pain in our lives to reveal our hearts. Not because He's mean or wants to test us.
Update: You don't just have one trial or period of pain in your life where He does this. Sometimes, our hearts need revealed again. Sometimes, we get too comfortable with life and our faith needs stretched and grown again. We tend to get to a place of complacency as believers when things are going good and we need to be reminded how much we need Him.
3. God doesn't reveal the big idea, the whole picture, the step by step plan of how it's all going to work because He wants us to keep coming back to Him for the next piece of information we need. If we had it all, why would we need Him?
Update: Thank God He doesn't reveal it all. There was a day where I thought I would love to see the big picture, but now I have realized that I couldn't handle it. We are so small in comparison to this world and God's plan that we can't handle any bigger pieces to the puzzle than He already gives us. I'm thankful that He gives me a piece at a time and that it forces me to come back for more.
4. God is good. No matter what. His timing is perfect, and mine is not.
Update: This is still true. No more no less. We shouldn't ever question that He works all things for our good. We may not be able to see it from this limited perspective that we have, but His word tells us that this is true.
5. Adoption is expensive. I didn't think we could afford it. But when you lay it all at His feet, and let Him have control, He will provide. It's amazing to watch Him work in a way that you know is humanly impossible.
Update: Adoption is still expensive for us :) Usually the big costs stop occurring once the process is done, but in Tyley Sue's case they are still there. God has blessed us with jobs to pay our bills, put food on the table and even supplies our wants and desires. We have prepared for rainy days and a rainy period of time, but in the case of life long special needs care....Well, you can never prepare for a rainy life. I love my rainy life, but again, you can't possibly prepare for the medical costs of it all; especially not by the age of 28.
I am so glad I went back and read this old post because this right here is the truth we all need "When you lay it all at His feet, and let Him have control, He will provide. It's amazing to watch Him work in a way that you know is humanly impossible. " There was a time when Tyler came home and told me He felt he needed to quit his full time job and pursue ministry fully, even if the pay wouldn't be as good. He felt convicted and knew that God was asking Him to step out on faith and trust Him. I however, didn't get the memo. God didn't clue me in on the provision and how this was all going to work. (This was just as I sent off our clearances for our home study for our adoption process too). So when Tyler told me of this word from God, I thought I was going to die. Real life stuff here, folks, yes I believe in God and should trust Him with it all, but this about did me in. I got in the floor like a mad woman and wrote down all of our bills and how much money I made and very dramatically drew a big negative sign with how much in the hole we would be if he followed through with this. It's hard to walk by faith and be practical at the same time; for me it usually takes a few days to find balance between the two. Tyler and I let it rest and we didn't talk about it for a week while I searched God for answers. I searched his word, I prayed, and I prayed more. God gave me a peace about it and I knew that I had to let Tyler lead us in these kinds of decisions, so I called him at work and told him to turn in his notice. A week later, he got the opportunity to work part time doing ministry with hospice while he also worked part time as a student pastor. God provided. Even when the numbers didn't add up, and if that had been my benchmark for a decision, we would have missed out on the opportunity to minister to others in multiple ways. Now I'm currently watching God using his people to bless us in regards to Tyley Sue's needs-I'm seeing things come together in a way that is humanly impossible. It's humbling and overwhelming all at the same time.
6. Just because I'm adopting, doesn't mean I don't ever hope to conceive, but because I'm adopting, I'm okay with never conceiving.
Update: I'm so thankful that God allowed me to become a mother in two different ways. For Tyley Sue I labored for years-with paperwork, home visits, and interviews. I was okay with never conceiving, but I did still hope to. Finding out I was pregnant with Elijah Ray was so exciting for me. I had seen God answer my prayer in an almost immediate fashion-which is nice to see every now and again. My prayer to take away my desire to be pregnant or to allow me to become pregnant soon was heard and answered!
7. The past year of preparing for adoption has been the most scary, awesome, nerve wracking, humbling, uncomfortable experience ever, period, the end.
Update: Take out the "ever, period, the end." Adoption was scary and awesome and uncomfortable. The trials we are currently facing with Tyley Sue trumps it though! We are on a path for which doctors have no answers for us, it's all up in the air. We don't know what God's plan is for her or for us. We know that regardless of His plan though, we will remain faithful. We want Him to use her and our testimony to reach others. That's what this life is about anyways!
8. New one here! I have learned you have to let God use your trials. We shouldn't hide or shy away from sharing the hard times in our life with others when it can bring glory to God. Imagine if we never shared our stories, our burdens, our praises? This is how God can use us to reach others. I am thankful for my journey through infertility because I've been able to help countless other women through their journey as well. I'm thankful for my adoption journey, because again, I got to be apart of helping families comes together! By sharing God's calling on our lives to adopt, we have talked to other couples considering adoption and answered their questions and have watched them celebrate their "gotcha day" too. I'm certain that God is going to use my current journey with Tyley as well to reach others. God has used and will use some of the hardest times in our lives to reach other; and it would be a shame to pass up the opportunity to point the praise back to Him.
Thursday, June 26, 2014
Monday, June 23, 2014
Be the Example
When I found out I was pregnant I was beyond excited and surprised! After 5 years of marriage and never once trying to prevent pregnancy I honestly thought it would never happen. I had recently found out that two other good friends were pregnant and instantly felt something that I hadn't felt in over 2 years - envy. I desired what they were getting. I wanted to carry a child in my body, feel him or her kick, let my husband touch my belly and feel a child move; I wanted to experience every ache and pain through the 9 months and experience labor, physically bringing a child into this world. I had desired this for a loooonnnng time, but the process of adoption had replaced it for me. I'm so thankful that God called us to adopt and that he changed my heart on the matter and for years it satisfied me fully. I had been thinking, just prior to finding out they were pregnant, that I wanted to adopt again. Tyler and I had been talking about it for a couple of months and we had started the process of becoming foster parents and were hoping to see what doors God would open for us to adopt through the Alabama Baptist Children's Home. Even with that process in place I still desired to be pregnant. So, when I felt the envy rising I began praying. I actually prayed that God would either allow me to experience pregnancy and having another child, or that He would change my heart and remove the desire. It was just four weeks later when I found out I was pregnant. I honestly believe that those prayers were heard and answered.
As Elijah Ray grew I thought about who I wanted him to be, how Tyler and I would raise him, and what he would do for God. I have prayed for him to give his life to God at an early age and to always follow Him and His plans. I have prayed for his future wife, yes, I know he's only eight months old! But I want him to find a partner who has a heart for God, who is kind, humble, and has a servant's heart! I have thought about how I will teach him certain things in this life and how it will shape the man, husband, father, friend he will be. It's wild to think of the influence we have in our children's lives. How important is it for us to be the example?! The only way to raise our children is to show them by example. The old saying "Do as I say, not as I do" should not be our motto. We should lead by our example and our children should be be able to "do as we do".
How can I expect my child to be in the Word daily if I'm not myself? If I don't make it a point to read it to him and with him from the very beginning? How can I expect him to pray if he never hears me or his dad in prayer? How can I expect him to choose a godly wife one day, if I myself don't display what a godly wife looks like in our home? How will he learn to serve others if we don't serve? The same goes for teaching forgiveness, patience, showing and extending grace, and love!
God's word instructs us to raise our children in the word and tells us in Proverbs to:
Train up a child in the way he should go,And when he is old he will not depart from it.
And then in Deuteronomy we are instructed to:
Write these commandments that I’ve given you today on your hearts. Get them inside of you and then get them inside your children. Talk about them wherever you are, sitting at home or walking in the street; talk about them from the time you get up in the morning to when you fall into bed at night. Tie them on your hands and foreheads as a reminder; inscribe them on the doorposts of your homes and on your city gates.
Can you imagine what our world would look like if we raised our children according to the above scriptures? If we truly trained them in the Word? Talked about God and His love and showed them what it means to love others selflessly? If our homes were filled with wholesome talk, less trash on the television(I'm guilty!!), and more time in prayer, in the word, and putting God's love in action?
The book of Matthew tells us about Jesus' reply to a question from a religious leader where He tells us that love is the greatest commandment we have.
Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.This is the first and greatest commandment. 3 And the second is like it: "Love your neighbor as yourself. All the Law and the Prophets hang on these two commandments.”
I have always said that love trumps all. If you love God and love others, dying to yourself daily, you can't go wrong. When love is your motive and you are willing to serve and love others without regard to "gain", that's when you are putting the love God has given you into action and being His hands and feet. This is what I want my kids to see in Tyler and I.
As I write this I am reflecting on the blessing God has given me in my children. Tyley Sue and Elijah Ray are so unique, and watching them grow is so different I'm learning (but that's for another post!), but God didn't give me these children just to fulfill my heart's desire. It wasn't just to complete my family and my home. There is a plan for them and just like me they have kingdom work to complete; and it's my job to equip them. In order for our children to be the men and women of God that they are called to be, we have to be the example.
As Elijah Ray grew I thought about who I wanted him to be, how Tyler and I would raise him, and what he would do for God. I have prayed for him to give his life to God at an early age and to always follow Him and His plans. I have prayed for his future wife, yes, I know he's only eight months old! But I want him to find a partner who has a heart for God, who is kind, humble, and has a servant's heart! I have thought about how I will teach him certain things in this life and how it will shape the man, husband, father, friend he will be. It's wild to think of the influence we have in our children's lives. How important is it for us to be the example?! The only way to raise our children is to show them by example. The old saying "Do as I say, not as I do" should not be our motto. We should lead by our example and our children should be be able to "do as we do".
How can I expect my child to be in the Word daily if I'm not myself? If I don't make it a point to read it to him and with him from the very beginning? How can I expect him to pray if he never hears me or his dad in prayer? How can I expect him to choose a godly wife one day, if I myself don't display what a godly wife looks like in our home? How will he learn to serve others if we don't serve? The same goes for teaching forgiveness, patience, showing and extending grace, and love!
God's word instructs us to raise our children in the word and tells us in Proverbs to:
Train up a child in the way he should go,And when he is old he will not depart from it.
And then in Deuteronomy we are instructed to:
Write these commandments that I’ve given you today on your hearts. Get them inside of you and then get them inside your children. Talk about them wherever you are, sitting at home or walking in the street; talk about them from the time you get up in the morning to when you fall into bed at night. Tie them on your hands and foreheads as a reminder; inscribe them on the doorposts of your homes and on your city gates.
Can you imagine what our world would look like if we raised our children according to the above scriptures? If we truly trained them in the Word? Talked about God and His love and showed them what it means to love others selflessly? If our homes were filled with wholesome talk, less trash on the television(I'm guilty!!), and more time in prayer, in the word, and putting God's love in action?
The book of Matthew tells us about Jesus' reply to a question from a religious leader where He tells us that love is the greatest commandment we have.
Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.This is the first and greatest commandment. 3 And the second is like it: "Love your neighbor as yourself. All the Law and the Prophets hang on these two commandments.”
I have always said that love trumps all. If you love God and love others, dying to yourself daily, you can't go wrong. When love is your motive and you are willing to serve and love others without regard to "gain", that's when you are putting the love God has given you into action and being His hands and feet. This is what I want my kids to see in Tyler and I.
As I write this I am reflecting on the blessing God has given me in my children. Tyley Sue and Elijah Ray are so unique, and watching them grow is so different I'm learning (but that's for another post!), but God didn't give me these children just to fulfill my heart's desire. It wasn't just to complete my family and my home. There is a plan for them and just like me they have kingdom work to complete; and it's my job to equip them. In order for our children to be the men and women of God that they are called to be, we have to be the example.
Wednesday, June 11, 2014
His plan > My plan
As females we all care about our appearance. Even if it's just a little, we care. Not everyone wears tons of makeup or goes crazy over the latest fashions; but we want to feel pretty. As a girl, I shave my legs, tweeze my brows, apply self tanner, lotion up multiple times a day, paint my nails, put my makeup on each morning, spay some perfume, & fix my hair. Some may say it's vain, but I do it because it makes me feel good and I think my husband likes it!
As we found out about what exactly is going on with Tyley I had some pretty crazy concerns. I have been thinking, what if she can't take care of herself from a hygiene and grooming standpoint? What about her eyebrows? Will I tweeze them? Will I wax them? I mean, I don't want her to have a unibrow!!! What about her legs? I don't want them to be hairy like a man's legs. So, will I shave, wax, use Nair? Will I put makeup on her face for special occasions? Will I buy perfume for her? Something that is just the right scent...where when people smell it they always think of her?
I know it seems so insignificant to most. It's something we take for granted with our children-like so many other things. We just assume that our life is going to be a certain way. That we will have kids, teach them certain things, they will retain said things, and then perform. But, that's not the case here. I have thought about needing a walk in shower-because she fights me now getting out of the tub. At 30 pounds, it's not so bad; but at 100 pounds it will be. I've thought about the possible regression of her ability to walk-which is a concern-and the need for a handicap accessible home and vehicle. I've wondered if I will be watching Bubble Guppies and Little Einsteins for the rest of my life. I've wondered if I will always feed her, bathe her, dress her, rock her, sing to her, lay with her so she can go to sleep, change her diapers, and blow bubbles for her. Again, may sound crazy to most, but those are the thoughts that creep in as reality sets in. Those are the thoughts that you can be certain I am tossing around when you see me gazing at her pretty face for long periods of time.
Most of us as parents dream about the future of our children. Playing ball, cheer leading, playing in the band, swimming on the swim team, playing on the chess team, performing on the drama team; getting a driver's license, graduating high school, going to college, first boyfriends/girlfriends, and even comforting them with their first broken heart. When you hold your little girl you dream about seeing her walk down the aisle to her soul mate. Those dreams are ripped away for a lot of us though. That is one of the parts that is so painful and comes up over and over. As your friend's children progress and move on to new stages and you stay in the same phase you've been in for months or longer; those are the thoughts come up again and it hurts all over.
One thing that I will always have though that not every parent gets is a little girl who loves me. I'm always going to have cool points. She isn't going to be embarrassed of me! She's always going to hug and kiss me-even in public. She's always going to want to sit in my lap and have me sing to her and rock her. So when you read that children's book, "Love you forever", you know the one, "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be"; I will be the mom rocking her teenage & adult daughter back and forth, back and forth.
I'm writing this all down in hopes that I'll be proved wrong, that one day I will look back at this post and think to myself "see, you were worrying for nothing!" I'm writing all of these assumptions down knowing that God is in control and His plan is greater than my own. I know that healing is up to Him, but I also know that His plan may not be to heal. So, for now, I pray for His sovereign hand in our lives and on my daughter; and I prepare and think about what our future holds. It's only natural. I could pretend that I don't think these thoughts, and that I'm trusting so much in His plan for our life that I don't even wonder what my life will look like in 5, 10, 20 years-but I'd be lying. I trust Him and I know He's in control and I'm honestly okay (most days) with whatever His plan is. His word tells us, in Jeremiah 29:11
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
I cling to this. I know that He is good and that is plan is for our good. I know that He's in control and that no matter what, His plan is the best. The trials that have come my way are for my good. The heartache I feel is for my good. It may not seem like it right here, right now, but looking at it from a perspective with eternity in mind, the perspective God has, it is good. It's amazing how quickly I forget what a small glimpse of life I have. Our view is so limited, so tiny, in comparison to the view God has. I also remind myself when I start wondering about the future and what steps lie ahead that God is only going to give me a little bit at a time. First of all, I couldn't handle any more than that as a human-I mean, I can even mess up the itty bitty baby pieces at times! Secondly, if He laid it all out, gave us every piece of the puzzle at once, we wouldn't need to return to Him daily. The only way to make it through and draw strength each day is to return to Him with a willing heart and spirit and allowing Him to fill us again. So, next time I'm yapping and complaining about whatever trial I'm in, ya'll remind me of this! You can also remind me of this verse from James chapter 1, verses 2-4
"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything."
Or this one from Romans chapter 5, verses 3-4
"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance;perseverance, character; and character, hope."
And, you can even show me this one from 1 Peter chapter 1, verses 2-4
" In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed."
Bottom line is, I do trust Him and even though some days are darker than other, I'm excited to see what He's up to in all of this. I'm praying for something big, healing or not, I'm just praying He uses us as we endure our trials and blessings in Tyley Sue, and that He allows me to share in a way that can help others.
Monday, June 9, 2014
Celebrating Gotcha Day!
Three years ago today we celebrated the arrival of our daughter. She was six days old when I held her for the first time. She was tiny, sleeping, and perfect. Dark hair, brown eyes, perfect skin, 10 tiny finger and tiny toes. We were in love the minute we saw her. We weren't expecting her though. We thought we would be on the waiting list for a year at least and only a little over a month had passed since we finalized our application. A woman chose us based on the "Dear Birth Mother" letter we wrote. She came in just two weeks before delivering and decided to place her unborn child for adoption and to give her to us. She said she didn't know she was pregnant until just that week. I have often wondered, if she knew the entire pregnancy that she was carrying a child, would she have aborted? Decided to keep the baby herself? Give the baby to someone she personally knows? I'm so glad for God's plan. I'm so glad she chose us but more importantly, that He chose us.
Today, I think about all of those little things, I think about our birth mother and what she's thinking about today. I also think about other three year old children and what they are doing. It's so hard not to compare. It's so hard to hear other children talk, saying "momma" and "daddy" and "I love you". When I look into her eyes though, I know she loves me. I know she knows me. I know she thinks I'm awesome! I love this little curly haired, big brown eyed girl more than I ever could have imagined. I'm so thankful to be celebrating our Gotcha Day, even if we did celebrate it by going to Speech Therapy!
Saturday, June 7, 2014
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.
.jpg)
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.
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 :)
Thursday, June 5, 2014
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.
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.
Subscribe to:
Posts (Atom)