4 - A Happy Birthday and an Open Letter to Parents of Children with a New Diagnosis.

8/14/15 "All that for nothing." I'm not proud of it, but that was one of my darkest thoughts when the doctor told us about Henry's condition.

Labor was hard. Really hard. Everyone told me that I did a great job and I was so strong. But being strong and doing a great job didn't make it any easier. So, when I found myself sitting in that chair across from the doctor, I couldn't help but think that ugly thought. All that hard work, all that pain, all those months of being pregnant, and this is what we get?

   Maybe you've read about James' initial thoughts after hearing the news. The dreams he had that had suddenly vanished. Many of my own dreams were fading too. What kind of big brother would he, could he be now? What kind of friendships would he be able to have with all the other babies who had been born this year?

    "Like arrows in the hand of a warrior are the sons born in one’s youth. Happy is the man who has filled his quiver with them."(Psalm 127:4-5) I had visions of getting a tattoo about this idea. It would be a quiver, with different arrows representing each of my children. The arrows would be all different styles, to signify that my children, each having different talents and personalities, were created for unique purposes. But as I pondered the idea in that chair-still stunned after the news- all I could see was a broken arrow. A broken arrow for my broken child with a broken chromosome.

     Now, here we are two weeks later. I look at my gorgeous boy and listen to his sweet sighs as he sleeps, and I know it was all so worth it. This broken arrow sure does fly. God has taught both James and me as a family and individually how to trust, love and follow Him more deeply than we ever could. We have been able to share that with hundreds (gotta love social media) of people from our Facebook page. We have seen prayers answered, and encouraged and been encouraged by so many people around us. We've gotten to share about this hope that we have in Christ in more ways than we ever could have imagined. All because of the gift God has given us in our beautiful broken arrow. I thank Jesus for the blessing he is to our lives and He taught us all that in the last month!

The above is an unpublished post I wrote one month after Henry was born. It would be several more month until I emerged from the slump of a Henry's newly received diagnosis. I'm thankful for the little bits of understanding God gave me through internally processing as I wrote all of my blog posts, but there was still so much sadness and disappointment to wade through. As I look back at that time, it's clear that He protected me from losing hope completely.

Today, my precious firstborn baby boy turns 4! After Henry was born, one of the most encouraging things to me was to hear from mothers of older kids with the same diagnosis. It gave me hope. Recently, a mom posted on our support group "When am I going to stop feeling this way?" I knew exactly what she meant. I'd been there. And now, I'm here. So, this post is dedicated to all those parents of newly diagnosed children. If you're reading this, I hope it gives you peace. You are seen and loved. Not by me (although, if I knew you, I would love you! Who am I, anyway, but a random stranger on the internet), but by a Heavenly Father who loves and cares for you and your baby.

After first receiving Henry's diagnosis when I imagined his 4th birthday, all I could see was darkness. All I knew was that I didn't know. Our future was just empty. I didn't know Henry like I do now. I didn't know how funny or gentle he would be. I didn't know how he would love his little brother or what a welcomer he would be to the world around him. I didn't know how cute it would be when he laughed so hard that he got the hiccups.

Praise God for being all-knowing and all-good! Now, I see that the "life at his own pace" thing that the doctor told us about when Henry was diagnosed is actually a good thing. We've learned to slow down and celebrate the little things that wouldn't have been given a second thought otherwise (see an earlier post on this topic here!)

I don't cry about Henry's future anymore. There were moments in the months following Henry's birth that I would just fall into the chair nearest me and cry in an emotional cocktail of sadness and fear of the future. Now when I think about Henry's future, while still slightly afraid of the unknown, I have proof that we're going to be okay. Just as we who are called according to His purpose are promised in Romans 8:28, God truly has worked it all together for good. All the things I worried about, all the fears I had then, God has already brought us through. And it was simple. Not easy, but simple. It turns out to be much easier to deal with things as they happen than to think/worry/cry about all the different possibilities that may never come to be anyway. This doesn't mean we don't make plans for what we'll do when Henry starts sneaking into the kitchen in the middle of the night, but it does mean that we're not going to lose hope about something that hasn't happened yet. Just as God has carried us through the many stages of Henry's life thus far, He will continue to do so for our good and to His glory!

 I couldn't be happier to be Henry's mom. I couldn't imagine a life without him, his joy, or even all the unique hardships that his diagnosis brings. Maybe on paper, the list of special help, medication, and appointments he requires would look daunting, but that list would be missing Henry's smile and funny jokes. That list doesn't take into account the fun "dates" we get during those appointments, how sweet it is to still be holding his hand while we walk, or the bravery I get to witness from our boy every single day. Between the lines of that daunting list are a million good, sweet moments, not to mention the other million good, sweet moments that we get just from Henry being Henry!

So, Mom or Dad, family or friend of a newly diagnosed baby, I pray that you find hope here. Most of all, I pray that the hope you find isn't just that you and your baby will be okay, but that you find hope in a God who loves you, sees you and cares for you. While I could try to convince you that your baby has a bright future (which they do!), I pray that you would leave this page convinced that God is good and trustworthy, and I pray that He would draw you into a knowledge of the salvation that Jesus won for all who would believe in Him.

And, to my dear Henry, you are proof to me of the love and sovereignty of God, and you cause me to worship Him more every day. You are a joy and there is nothing about you that I don't love. God has a plan and a purpose for your life, and I thank Him daily that I get to be a part of it. Happy birthday, my precious boy.

 

He's Still Henry- Our Prader-Willi Syndrome Story

One night last week, I had a moment where, for the first time in his 18 months of life, I thought, "I wish Henry didn't have to have Prader-Willi Syndrome." It was a guilty thought, and was accompanied by more than a few tears. I'm not sure if they were tired tears, third-trimester tears or actual sad tears, but they were there nonetheless.

trying so hard to crawl

Trust me, I have wondered what Henry's life would be like without his condition many times. But I've always countered the thoughts with, "Well, Henry wouldn't be Henry without it." But that night, seconds before the hot tears began soaking my pillow, the thought occurred to me: what if Henry could be exactly himself, but also able to walk. Able to eat a cupcake, or spaghetti with big, fat noodles like the rest of us? Same personality, same long hair and big blue eyes, but more normal. Now, unless you have a child with a condition like Henry's, you don't know how much it stings to hear the "n" word come from someone's lips, and how especially abhorrent it is to feel it creep up inside your own brain. Yet, there it was resounding in my mind like a huge gong had just been rung on a mountaintop.

So, I did what Katniss Everdeen does in the third book of the Hunger Games trilogy (okay, not exactly, but the same basic idea), and repeated the same few phrases that I've clung to so often on this journey: "Henry's still Henry. God is still God. And even if all I can do right now is just keep going, that's what I'll do."

I was warned by an old friend that there would be days like the one I had last week. That this life we have as parents of children with special needs is a roller coaster, and there will be a fair share of both high and low days. That's when we just keep going. Don't wallow in the sadness, but wade through it. Trudge through the muck, because soon enough, you'll be on your way up again. By God's grace, life with Henry has been so full of highs with only the occasional drop along the way.

It was a morning a few days later that I was given a truth that I'll forever hold on to. I was encouraging a new mama whose own roller coast seemed to be taking a dive, and I myself was reminded of the gift it is to have a child with a disability. "There are things we'll get to learn about our boys that we never would have even noticed without their PWS."

Boy, am I thankful for the Holy Spirit who teaches and reminds me of good things, because I would NEVER have been able to say that, or even feel that way without His leading in my life. Still, it couldn't be more true!

Here are things I know about Henry. He's a hard worker. He's patient. He's determined. He's easy-going, and teachable. He doesn't stay mad, but is quick to laugh or make a joke. I could go on, but I think you get the point. Now, ask me how I know those things. Because every week in therapy, I see that look in his eyes as he's crawling across the rug. I watch as he tries and tries to get that plastic coin in the slot of the singing piggy bank, and share in his joy when it finally meets its mark. And even when he's been pushed further than he wanted to go, and our P.T. tells me I can pick up the crying boy, all it takes is a hug and a kiss for Henry's sweet smile to emerge from underneath his tears.

The aftermath of a particularly grueling therapy session.

Those are just a few things I wouldn't know if Henry were a regular 18-month-old. The pride and joy I feel every time Henry attempts to crawl for a toy, would've been lost on that single, solitary moment of the first time. And, if Henry were walking right now, I wouldn't be rejoicing with every step like I know I will when the day really does come. I'd probably be wishing that he would've taken longer to learn the skill! There is so much joy in waiting. In anticipating and watching as the tiniest developments lead into big ones.

I am so thankful for the change God has placed in my heart, and the wisdom He's given in these rare circumstances of our everyday life. And, when this new boy comes in May, when he crawls for the first time and never looks back, or when the first step he takes is a running leap (the way he kicks, I wouldn't be surprised!), I'll be able to rejoice all the more in the way the human body was meant to develop, and how perfectly we are all formed by the Creator of the universe.

Henry is Henry, and this new boy will be himself too. And I will go through my life in wonder, awe and worship of the God who gave me the gift of motherhood to such unique, perfect little lives.

Birthdays - A Celebration!

Birthdays have long been one of my absolute favorite things. As a kid, I used to have my birthday parties planned almost as soon as that years' party was over! Today, I turn 25. And this year, just around the corner from my birthday, we'll be celebrating another very special birthday!

As I think about the past year of my sweet, darling Henry's life, the highest of the highs and the deepest, darkest lows, I am filled with a sense of extreme gratitude for it all. Not because I loved every second of it (let me tell you right now, there are more than a few seconds I could do without), but because I love every bit of Henry, and having him makes it all worth it.

©KiraEllenPhotography

There's a verse that comforted me when Henry was around 6 months old. I talked about it more recently with some friends of mine and was reminded of it's sweetness.

 My frame was not hidden from you,

when I was being made in secret,

    intricately woven in the depths of the earth.

 Your eyes saw my unformed substance;

in your book were written, every one of them,

    the days that were formed for me,

    when as yet there was none of them. -Psalm 139:15-16

I was at a women's conference when I heard these words for the first time after Henry was born. They were meant to remind the women there of their value to God. For those of you who know this particular chapter in the Bible, it's the same one that a few verses earlier says, "you knit me together in my mother's womb." What a sweet, reassuring verse to read as a new mother! To think of a baby being knit together by God inside of you! Wow. But more than that, look at vs. 16. "In your book were written, every one of them, the days that were formed for me, when as yet there was none of them." Do you know that this means? This means that, before that 15th chromosome was broken, Henry's first birthday was written. While I was taking deep breaths of pure oxygen during labor in the hospital delivery room, the day Henry would be diagnosed with Prader-Willi Syndrome was written. Not only that, but the day we decided on "Fisher" for our unborn son's middle name, God saw Henry's life at 2 years old, and 16, to the very day he takes his last breath. What an intimate, comforting feeling, to understand that God knows.

The name "Fisher" came from our desire to see our son grow to follow Jesus and have an intimate relationship Him. Jesus Himself said, "Follow me and I will make you fishers of men." So, giving Henry this name would speak a blessing and promise into his life that, if he chooses to love and follow Jesus, he will be used for the kingdom of God. In my mind, that meant waving goodbye to our 18-year-old son as he boards a tiny plane that will take him to a small tribe in South America that hasn't heard the gospel yet. But God knows Henry's days. We face a reality that Henry could very possibly be dependant for the rest of His life. But that doesn't change what God can do through him. God has written Henry's days and He will be able to use his life in ways I could never have imagined.

I think as Mamas, it's easy for our kind to think so much of our children and what God's word means for their lives that we forget that it also applies to us. I've been reading those verses in Psalm 139 as "Henry's life verses" so long that I forgot to just read it for myself. And you know what I found? Yes, of course you do, but let me tell you anyway. It means the exact same thing for my life! Those words that cause me to feel the intimacy of our great and almighty God for Henry's sake are there to convey intimacy and love to me as well. Those scenarios I wrote about earlier? Celebrating my baby's first birthday, giving birth to a child with a deletion in his 15th chromosome, the day we picked a name, and the day I sat in that room listening to the doctor tell us about our son's condition; those were all written the day I was born. God saw all of those moments, the victories and pain, all the way back when my chromosomes were being matched together. He knew this road would be difficult for me, but He also that I could trust His faithfulness to carry and comfort me through each and every moment.

So, on this, our birthday week, I ask you to join us in our celebration! The God of the universe has written my 9,125 days and Henry's nearly 365. We rejoice in His knowing us intimately, and faithfully guiding us for this long, and trust Him for the rest of the days of our lives. 

Why I Stopped Praying for a Miracle - My Prader-Willi Syndrome Story

The month of May is Prader-Willi Syndrome awareness month! Didn't know that? Me neither, until this year! So many moms in this new-found community of mine have been posting their stories to encourage others and help the people around them understand a little bit more about this condition that affects our lives everyday. I figured now's a good a time as any to really hone in my blogging skills by posting a bit more regularly this month about our journey so far and the things I've learned over the past *almost* 10 months. I'll start this experiment by writing a little about the very first lesson I was faced with almost as soon as Henry was diagnosed.

Now, don't get me wrong. I love praying for people. I love praying impossible things, and hearing about or seeing first-hand how God answers those prayers. And no, this doesn't mean that I'm never going to pray a miracle over someone ever again. God could even change my heart and tell me when to start praying for this miracle again. But for now, all I can tell you is that I understand.

I can't believe how tiny he looks in this photo!

When we got Henry's diagnosis, I was flooded with all of the worst kinds of emotions. I didn't want see him or hold him. There was even a fleeting moment when I thought and told my husband that I felt like we had "wasted" Henry's name. That lasted for about 2 seconds. Because when I actually did go over to his hospital crib and pick up that sweet, tiny little baby, I knew that there was absolutely nothing about this child that was a waste.

Yet, that night in bed, I prayed and PRAYED for a miracle. "I'm the knocking widow here... open the door. You told me I could do this. You told me if I prayed long enough, You would answer." I prayed that prayer every night for weeks.

Something I've learned in my study of God's word is that, as a Christian, everything I do should be done for the glory of God. Sure, you might recognize the wording from one particular verse, but what I've noticed is that this is a major theme throughout the Bible. And, after reading God explain His plans to Moses, Abraham, and the prophets, I've realized that one of the main purposes of those plans is to spread His name and glory throughout the nations. And, being the all-powerful, all-knowing God that He is, the things that bring Him the most glory are also what are best for us, what benefit us like no plan of ours ever could.

James took this soon after we got home.

So, in my still-small understanding, I started praying that Henry would be "healed", that his 15th chromosome would be made whole again for God's glory. In these new prayers, I promised that I would tell everyone I met that Henry had been healed and that, like Hannah in the Bible, I would dedicate Henry, his life and his story to spreading God's glory to everyone I met. It was then that I was faced with a question: What would actually bring God more glory? A long-gone story of healing, or an ongoing story of trust? If there's one thing I know about my wandering heart, it's that I am prone to take blessings for granted. After a while, a healing would just be "healed", and even that would turn into normal, everyday life. Trust, however, is built and sustained. I will NEVER take Henry to a doctor's appointment, or watch him in Physical Therapy and think that we've done this all on our own. I will never hear a man at the grocery store look at my baby and say, "That's a BIG one!" (yes, that actually happened), and not want to sing God's praises about how far He has brought us.

In those first weeks after the diagnosis, we shared with hundreds of people via social media not only about Henry's condition, but also about how we believed God would use it for His glory and our good,  and how we trusted Him no matter what. I was even used to share it with one of our nurses, a grief counsellor at the hospital and countless others after we got home.

That's why I've stopped praying for a miracle. I still pray that God's glory will be spread through our son and his life, but not that way. I believe that this story is still going, and I can't wait to watch it unfold.

Lord, continue to share this story of Your goodness and faithfulness through our family, and use us to spread Your glory throughout the earth. 

This big guy has been doing a lot of practice sitting up! I think he's getting the hang of it. Praise Jesus!

*I thought it best to add a little disclaimer here: I don't think it's wrong to pray for a miracle for our children. If you are the parent of a child with a disability, and you feel led to pray for healing, PRAY! If you've felt led by God to pray for healing for Henry, PRAY!  Listen to what the Spirit is leading you to do, and do it for His glory! 

Same Journey-New Adventure

It was the night of our farewell party that I received an amazing encouragement from a friend. We were saying goodbye to many dear friends the week before we began our journey to S. Asia. This friend said that, while James and I were being prayed over, God had given her a picture for our future. The picture was of a fox looking intently into the distance, its ears perked with anticipation. The interpretation of this beautiful picture was simple: If we would intentionally seek God's will for our future, if we would perk our ears intently and wait for His call, He would be faithful to show us His plans for our future. 

You have to understand, at that point the only thing we knew was that God had called us to serve in S. Asia for six months. When people asked us what our plans were after those six months, our answer was usually something like, "uhh... I don't know... find something else to do, I guess." As believers, we knew that whatever we did would include sharing the gospel with those around us, but we had little to no idea about how that was going to look. And then, through my friend, God gave us a beautiful promise.  We just needed to focus intently on His purpose, and He would show us and lead us according to His plan for our lives. 

What a relief! To know that the God who orchestrated our journey to S. Asia would STILL be leading and using us even after those six months was over!

So, perk we did, and the vision that God has given us for our new ministry is more beautiful than we ever could have imagined!

Long before James knew we would travel to S. Asia, long before he met me, God had planted in him a love for His word, a talent for teaching it to others, and a zeal to see Christ worshipped as King in purity and in truth. That love, talent and zeal that God has so beautifully cultivated is what has brought us to this point of starting a church!

This Is Church will be a church that focuses on growing the inner heart of a church instead of growing outwardly. Rather than trying to rack up the numbers of attendance, the passion of This Is Church is to cultivate maturity in each of its members so that they can lead their everyday lives as if it's their personal ministry-which it is. Everyday, we meet hurting, lonely people, and the people at This Is Church will be fully equipped to minister to those people. Not just to give them a smile, or to encourage them on the surface level, but to share the truth of the Gospel with them, that they might have new life in Jesus Christ. As our members live their lives as their personal ministries, sharing the gospel with those around them, it is inevitable that This Is Church will grow. Not just grow, though. This Is Church will become a body of believers that affects the entire world because of its dedication to sharing the gospel and living for Jesus in a way that has often been forgotten and passed off as radical. For more information about This Is Church, you can visit our website (yes, we have a website!): www.this-is-church.com.

As always, thank you for your prayers and support. It means so much to us that we have such a loving family of supporters that are with us on this journey! 

Looking forward to filling you in on what's to come,
The Everetts

Now What?-The Return

Things are a little different here in America. I am daily reminded of the past six months by things I see around me, but the similarities are small. The stray dogs of S. Asia have turned into pets behind every chain-linked fence. The beggars in the traffic circle have become men and women with cardboard signs. Here in America, the rich are even more rich; the poor are a little less poor. Yet, two things remain: God is still King and people will be lost unless they hear about Him. James and I firmly believe that, just like the day we arrived in S. Asia, we are here for the purpose of sharing with those people. I would go as far as to say that that is the reason we're alive. 

That purpose is what James and I will be pursuing for the next season of our lives. What really resonated with me while living in S. Asia was how easy it would be to do what I was doing there back in my home town. I remember catching myself thinking, "If only I were back in Greeley. Then I could actually communicate my heart- God's heart- to people." Of course, that was early on in our time when I had had barely any language training under my belt(and trust me, God did plenty of wonderful things even with the language barrier!), but it made me realize how much I had taken my heart language for granted in America. I will not make that mistake again. I bear in my heart the most important message human ears will ever hear, and I will not forget what a gift it is to live in a town where people speak the same language as me. James and I have come back with the purpose of doing the same thing we've been doing for the past six months-except in America. 

This realization has brought us almost to the same exact point in which we were standing the few weeks leading up to our departure to S. Asia. We're not sure where we will live, where our funds will come from, or even what our day-to-day lives will look like. My Israelite's heart wants to panic. I know I just saw God part the waters of the Red Sea, but part of me just wants to turn to the idol of self-reliance and comfort as I wait here at the bottom of this mountain. It amazes me how many times those silly people turned and complained against the God who had JUST provided them with something amazing. No wonder the psalms are filled with the word "remember". "I will remember the deeds of the Lord; yes, I will remember Your wonders of old," says Psalm 77:11. When I read my past posts like the one from April, I am reminded of the deeds and wonders of old. I am reminded of God's provision of a place (two, actually) to live, of the exact amount of funds needed to live overseas, and of the clear purpose in our day-to-day lives which we were shown. Remembering those things brings me to a state of humility in front of the God who I am crying out to for manna...then water...then quail. It also brings me into deeper state of praise. I can praise Him for what He's done, and also what He will do because He is worthy of that as well. 

The human nature in us wants to be ashamed of talking to people about our future here in Greeley. "Well, we're not sure where we're going to live, or where our income will come from, but we know what God wants us to do and we're going to do it." That's not exactly what people will be expecting to hear when they ask us what we're "up to" these days. Nevertheless, after all that we've seen and experienced of God's goodness and faithfulness, how can we say anything else? Regardless of what Satan wants us to believe, it's not what others think of us that matters. God has given us a clear calling for our Everett day life (even more details to come later), and has asked us to follow Him in blind obedience.Will we forget His past goodness and turn to those idols of self-reliance and comfort? No, thanks. Lord, that we would be faithful only to You each and every day for the rest of our lives. Amen