Crying on the Kitchen Floor

It's been a long time since I've written a blog post. I don't even know if blog posts are "in" anymore. Today, I found myself thinking about our time in our city and feeling grateful. I started to write in my journal but stopped. These things are too good. Our King is too good. These things need to be shared. I hope this is an encouragement. I hope it spurs you on. I hope it opens your eyes to the kindness and majesty of our King! He has done great things! In October of 2021, I found myself in a state of deep overwhelm. I had a 6-year-old with special needs, a 4-year-old, and a 5-month-old, and we had just moved back to our home in S. Asia. Every so often, I would be doing dishes thinking of all the things on my plate, then abruptly turn off the water, slump down to the floor, and take a second to cry. A journal entry from that season reads: "'If I make my bed in the depths, You are there.' You are there, and so here we are. Deep beneath the muck of busyness, where I'm afraid I'll stay for a while. Yet, not without You. Not without pleasure and wondrous joys throughout the day. Not without seeing, feeling, hearing, smelling, and tasting that You are good. Stay with me. Lead me on. Meet me at Home and say to me, "Well done," not on my merit, but that of Your Son!" Those were desperate times. In a recent meeting with a friend, I reviewed the list of stressors during that season. The city (which is a big, over-arching category for everything from traffic, being stared at, to ketchup instead of pizza sauce). Post-partum adjustments. Adjusting back to life in our country (which, if you've ever lived the expat life, you know, is different from that first category). Visa runs. Moving to a new flat. Losing a suitcase full of many beloved items in that move. It all happened then. "And you lost an aunt, too, right?" My friend added. Yes. My parents' close friend and the only non-relative I ever called "aunt" had unexpectedly passed away. My sweet Aunt Christy with the sparkling, joy-filled blue eyes and tender, gentle, laugh-filled voice. I hadn't seen her in years, but I cried more that day than for any other friend or relative's death. I remember thinking it was strange that I would be so affected by her death. It felt like I had lost my own mother. In part, it was because of the woman that Aunt Christy was, but it was also, surely, due in part to the other little things that had been adding up. That was the first six months after our second return to our city.

In that season, I posted pictures of my growing baby and beautiful boys and talked about all the good happening around us. It wasn't fake. It wasn't ignoring reality. It wasn't all hard and bad (which, by the way, are not the same thing). There was so much beauty and goodness in that season. I thank my King for the grace He gave me to see it. That even then, in my hardest moments, I was able to come to Him. To cling to my Shepherd. To see and feel His goodness. To realize that He was at work. To trust Him. In the words of Brother Lawrence, "If I fail not, then I give G*d thanks, acknowledging that it comes from Him." As much as I failed in that season, I give thanks to Him for revealing those truths to me and sustaining me in them. 

I can't say exactly when things changed. Some of them didn't. That restaurant (from which we will never order again) still makes their pizza with ketchup instead of tomato sauce. It still sometimes takes 30 minutes to travel less than a mile. My kids still eat food. But somewhere along the way, it got easier. 

Our schedule normalized, as did my post-baby hormones. Our kids grew up, learned to play together, and no longer forget to sit on the potty when they have to go. I started enjoying doing the dishes (a miracle I consider to be on the same scale as the parting of the Red Sea!). All of these little changes have ushered us into a new season. Not to say hard things never happen. It's just different.

So, as I did the dishes recently, hearing the laughter of my family coming from the other room and thinking about His great gifts to our family, I knelt on the floor and cried. It struck me that it had been a while since I'd last been in that position and how vastly different the emotions were that brought me to it this time. Then, I cried more. 

As you see, there's been a lot of crying in the journey we started 3&1/2 years ago. Our faithful One has brought us through them all. He's counted every one of those tears. He's been strong, good, present, and sovereign through it all. And, for the next 3&½ years, until the end of my life when He finally brings me Home, He will remain to be.

I look forward to the ways He'll deepen my understanding of His infinite character in the seasons to come. If anyone ever looks at my life and considers me faithful, let them first consider the majesty, power, worthiness, and faithfulness of the One who kept me so.

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. 

Our Prader-Willi Syndrome Story- Growing

Prader-Willi Syndrome is quite an interesting disorder because of the way it changes as the child grows. For instance, the distinguishing characteristic of people with PWS is their insatiable appetite. They are constantly hungry no matter how much they eat. As infants, though, individuals with PWS often have trouble gaining weight because they don't eat enough.  Henry had such a weak suck as a newborn and was constantly sleeping, so it was difficult for him to wake up long enough to take his whole feeding and for his strength to last that long as well. I remember from our 3+ weeks in the hospital hearing the doctor say, "if he eats he goes home!"day after day during his rounds.  It took a long time for Henry to consistently eat even 2 ounces at each feeding time.

Another characteristic of babies with PWS is their low muscle tone. In my very minimal understanding, "low muscle tone" means that Henry's muscle fibers don't overlap like mine do, and because of that, his movements need to be almost exaggerated in order to get the same response out of his body that a small movement of mine would. And that just kind of slows everything down, like trying to lift and swing a bat that weighs 20 pounds. Even sucking is a large feat for babies with PWS. They are often sent home from the hospital with a G-Tube in their stomachs and are fed liquids through that for months before being able to suck and swallow well enough to gain weight by eating orally. While we are thankful that Henry never needed one, I try to remember that he has many friends in his PWS community who do.

Henry being "floppy" was just about the first thing anyone noticed about him when he was born.  It sounds cute, because of Peter Rabbit's sister (you know... flopsy...), but it isn't. Well, it is cute because it's a baby, but it's not cute because it's so unnatural. I recently held the one-month-old son of some sweet friends, and I. was. shocked at the way little Ashton held his head up and straightened his back when he was uncomfortable. I remember thinking, "oh so this is what it's supposed to feel like!"

So, what do we do to combat this low muscle tone? Well, for starters, lot's of physical therapy!

This is Niki. We met her through an organization in Greeley that connects families and children with special needs to specialists in all kinds of different types of therapy. She comes once a week and works with Henry for an hour on rolling, sitting up, tummy time and a number of other things. Today, we had a meeting with our case manager, something we do every three months to talk about whether or not Henry has met his "playtime goals" that we as a group had set for him at our previous meeting. The goals? Rolling over and reaching for a toy while on his tummy. Sounds easy, right?

At almost 10 months, Henry can sit up for about a minute by
 himself, less if he's being challenged to turn his head or raise
his hands.

If there's one thing I've learned from Henry's PWS, it's that it is a stinking miracle that ANY baby develops the way they're supposed to! Watching Henry struggle with things like raising his arms to eye level or looking from side to side while sitting up has put me in a state of complete awe when I see other babies do those things without even thinking about it. The steps it takes to roll over - all the muscles that have to be engaged for that one quick motion is incredible! Did you even know that when a baby rolls from their tummy to their back, that they are tucking their chin, pushing off with one leg, swinging up the other and contracting their abs and back muscles? All without really knowing what to do or how to do it. They just do! The first time Henry even attempted rolling off of his tummy (for a while there he would just lay limply on the floor like a rag doll!), he jerked his head back and gave a little twist, as if the leverage of his big, heavy brain would get him where he wanted to be. Now, after almost 7 months of P.T. with Niki, Henry can tuck, push, swing, and contract with the rest of them! Praise God!

As Henry grows, so will the list of things he'll need help doing. The organization that connected us with Niki will also connect us with Occupational Therapy, Speech Therapy, and any other services Henry might need as he develops! Maybe it's because I've never had a reason to until now, but I have never been more thankful for science and people who are interested in learning about the body when it works like it should, and who are brilliant enough to find a way to help when it doesn't.

A new adventure we will be starting with Henry on Monday is the daily administration of Growth Hormone! Some children with PWS are born with a deficiency of their body's natural Human Growth Hormone, and others aren't deficient, but need a little extra to get things going. In Henry's case, his body makes about half the amount of HGH as is usual in kids his age. In either case, though, administering HGH has been very successful in patients with Prader-Willi Syndrome! Not only will these treatments help strengthen Henry's low muscle tone, but it will also help him grow in height to the average level, make his veins less flimsy, and has even been shown to aid in cognitive ability as Henry gets older.  We are so excited about the effects adding this to our routine will have on Henry's development, and can't wait to see how he takes off after Monday! I remember the way my heart lurched and the careful way the Endocrinologist spoke when he said the word, "injection" together with the words, "you" and "do". But, like the countless other things we never thought we'd need to learn, this will soon become easy. Besides, the good that this one thing will do far outweighs my fear of doing it. 

If you have any specific questions about Prader-Willi syndrome or Henry's growth, please feel free to comment or message me! And you can always go to fpwr.org or pwsausa.org to find information from actual experts if you're into that. As always, thank you so much for following along, loving and supporting us as we walk along this road!

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! 

Parenthood-The Land of Unknowns

We knew even before we got pregnant that we'd have no idea how to be parents. Sure, we knew the general ideas, but not the nitty, gritty, dirty, confusing, scary stuff. So many times during my pregnancy I googled different words trying to describe what I was feeling inside of me for hopes of finding out that those feelings were "normal".  Praise the Lord, they all were. Little did we know, even a normal, perfect, "picture of health" pregnancy doesn't always translate to a normal, perfectly healthy baby.

I've been trying to write this post for a while. I have about 4 different drafts of posts about different aspects of the past 3 months, but they all revolve around the same theme; I have no idea what I'm doing. Those earlier drafts are hopeless, you can feel the sadness in the words written there. This post, though, is going to be quite different than the drafts I'd written. Why? Because, now I know it's okay. No, not just "know".  Now I believe it's okay.

I recently watched a show (during Henry's nap of course... as if there aren't more important things to do during that hour) where some doctors had to tell a family that their newborn babies were sick. The camera zoomed in on the parents' faces as their worst nightmare - no, something they couldn't have even dreamed - was coming true. Right then and there (I was standing in the kitchen doing dishes... see? I do do stuff during Henry's nap. Ah, the glories of multitasking) it hit me. I actually understood what those parents were feeling. Not just like, "Oh, ya, I understand... poor parents" but an actual, agonizing pain in my heart as I remembered the morning a nurse came in and delivered similar news to me. And that morning wasn't a tv show. It wasn't two actors playing characters and reading lines. There was a real nurse who was actually telling me that a helicopter was coming to pick up my son and take him to a different hospital because they couldn't treat him where we were. The unknowns swirled in my head as we watched the helivac team take our son away before I was even discharged. What could be wrong with our sweet baby boy? Was this a result of something I did or didn't do during pregnancy? Was this our fault because we got our dates wrong and induced the labor of a baby who wasn't yet full-term? I remember being held in the strong arms of my husband waiting for the doctor to discharge me. Just like a scene from that dumb show, I can see us standing silently in front of that sunny window, my arms not even able to lift around my husbands waist; just hanging there as the weight of the world - our world - tied them down.

Our sweet guy while we were in the hospital.

The next few days turned into weeks that came in waves of good news and bad news. We were transferred to yet another hospital where we ultimately received news of our son's diagnosis; a syndrome that we hadn't even heard of before. So many people told us that our baby was lucky to have us as parents. That our faith and trust in our Creator made us the perfect candidates to raise Henry. I can't say that I always agreed with them. Surely there was a couple out there somewhere who was just a bit older, more mature, maybe even slightly more prepared to take on such an unexpected challenge. There were so many times that I told people that what was happening was okay. That I trusted God and His plan for our son's life. As much as I knew that God really was trustworthy, and that His plan really was best, I often struggled to believe it. Struggled to lay every hurt, worry and tear on that fact. Honestly, I'd never struggled between emotions as much as I did in the first month - make that the first two months - of Henry's life. I would go from truly being at peace with the situation to begin a complete mess with worry and doubt in a matter of seconds.

I write this now, feeling like a soldier after a long, gruesome battle. Weary and dirty, standing among the carnage of sorrow and doubt, but knowing that now there is peace. The worry is gone. The fight is over.

So, what changed? What has brought me from a place of "knowing" to "believing"? Well, quite honestly, a good cry with a dear friend, and a long, hard conversation with my husband. The cry helped me to realize that I was still sad. The conversation carried me past that sadness. For too long, I had focused on what happened, forgetting to let the happiness of "now" shine through. Now I no longer have to just say, "It's going to be okay", because I know that it's already been okay. We've been through a lot, and we survived with God's help. Now, my Thomas-like heart can believe it. Jesus told His doubting disciple, "Blessed are those who have not seen and still believe." So, having seen my fault, and knowing there will be so many more situations where I will battle between knowing and believing, I cry, "I do believe; help my unbelief!"

So, I guess I'm back where I started; not knowing anything. Of course, I know more than I did when I was pregnant. I certainly know more than I did way back before I was pregnant! Like, for instance, what 3 am feels like, and how not to freak out when a baby doesn't poop for 3 days (who knew breast milk was so easily digestible!). But, there are still so many unknowns that we will come to as a family. So, we start trusting God now for future unknowns. That way, when we get there, we can say, "Oh, there you are, I've been waiting for you." And we can let our Shepherd take over from there.