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.

Because He Lives- Henry Fisher.

So many times a day, I look at my son laying in his baby hospital bed in the NICU and wonder to myself, how did we get here? Wasn't I just pregnant a few days ago with a baby safe and sound inside of me? Many of you who knew we were planning a home birth might be thinking the same thing. NICU? Hospital? How did this all happen?

Being 42 weeks pregnant, it was necessary to be induced because of certain state regulations. To be honest, I was beyond ready to meet this baby, so the thought of induction didn't worry me a bit! We checked into the hospital Tuesday morning, and sweet Henry was born Wednesday night. It was a long, hard labor, but holding that baby on my chest and hearing his first tiny, squeaky cry made it all worth it.

The next 24 hours seemed to be a giant spiral of bad news and worry. Henry had low blood sugar. He wasn't eating well. His muscle tone was poor. The nurses came in every two hours with updates like this until the last one came early on Thursday: a helicopter is coming to take him to the NICU at a different hospital. As James and I waited to be discharged, we hit our breaking point. We started questioning everything we'd done up to this point. What did we do wrong? What should we have changed?

Now, it's 1 am Saturday morning and James and I are hunkered down into our reclining chairs in Henry's hospital room. This has been the most encouraging day of progress so far. Henry has been eating and regulating his own blood sugar which allowed him to be taken off of the IV line that was put in through his umbilical cord. We've been visited by friends and family and so many have been praying for us and giving us encouragement. But there still lingers that feeling of sadness as I wonder how this all  happened and what part I played in it all.

It's now that I'm reminded of a blog post I was going to write after Henry was born. I planned it all out almost as soon as I found out I was pregnant. It was going to be full of happiness and perfection as I wrote about how sweet it was to have a great, easy labor at home and be able to hold my perfectly healthy son as I typed in my living room the very next day. It was going to be a post based on the  old song, Because He Lives. As I've been thinking about that song while tearing up in this recliner, I've realized that song is much more appropriate for this post.

"How sweet to hold a newborn baby and feel the pride and joy he gives. But sweeter still the calm assurance this child can face uncertain days because He lives."

This verse would not have felt so real and encouraging in the "perfect" post I had imagined writing. Only in this scenario, this real-life moment, could I so deeply understand the truth in those words. These past few days have, indeed been uncertain. The next few are sure to be as well. But, it the midst of this doubt, worry and chaos, Jesus lives. And because He lives, I can face tomorrow. Fear is gone, because I know He holds the future. And that is exactly what makes these hard, scary, heavy-hearted moments worth living. He lives.

A dear friend encouraged us by pointing out that these early moments are part of Henry's testimony. I pray that God would use this testimony in amazing ways, and that many would come to understand the worth of living life because of a Savior that has risen from the dead, and who offers hope in life by His merciful death.

Waiting - And Waiting

Well, our due date has come and gone, and our little baby is still snuggled up inside. I'm not exactly surprised by this. Most of the first-timers I know have been 1-2 weeks late with their babies, so that's basically what I've been expecting. Until a few days ago, I was prepared to meet our son at least a full week (or more) after his due date.

Monday night, however, I started having contractions. They were light, and irregular, but definitely there! I timed a few before I told James, not wanting to give him a false alarm. 3-5 minutes apart, lasting 30 seconds to 1 minute! If there was ever a night we couldn't sleep, that was it! James and I finally decided to just get out of bed at 5:45 and go for a walk, hoping that would speed things up. I had timed almost 200 contractions throughout the day when our midwife decided to come and check things out for herself. Apparently, there's this thing called prodromal labor. Not Braxton Hick's, but not really labor either, just... labor that's not labor. The upside is that those contractions help toward real labor (maybe even making the real thing faster...?), but the downside is that after almost a full 24 hours of contractions, we still have no baby! Gonna be honest here, I definitely cried after our midwife left. I've never been more disappointed in my life!

The next day, James and I basically did everything we could to naturally induce labor. We had been so close just the day before, he just needed a little push, right? It was near the end of the day that we realized something: we've been doing everything we could think of, everything we've heard would work, and this kid still wouldn't budge. Could it mean that his time just wasn't here yet? Did we really have to start believing what we've been saying these past nine months and trust God and His timing? The answer, of course, was quite obvious.

As anxious as we are to meet our little baby, that little prodromal diversion made me realize how sweet that moment really will be. For now, we'll keep waiting. We'll continue to cherish the kicks, the rubbing of this giant belly, and knowing that everything will come exactly when it needs to, according to God's perfect plan for our dear little son's life! See you soon, you little cutie.

A Happy Place - Nursery

Well, everyone, we moved. It's a beautiful little place with two little bedrooms and a whole lot of love. In the first few days of our being here, I unpacked almost every box... almost. You know when you have things that you know you'll need but don't necessarily know where to put any of it?  I have about three boxes of that stuff. The kitchen was the easy part; you need to cook? You need plates to eat off of? Better put it all away where it goes. Secretly, I'm tempted to just throw these last boxes away without even looking in them. If I haven't needed them yet, I don't need them at all... right? Maybe just a few more days of seeing them lurking in the corner will bring me to action.

One room in the house that has not been difficult to fix up is the nursery. I absolutely love spending time there. Sometimes during the day, I'll just go and sit in the cozy glider that James' parents gave to us, and bask in all the hopes and dreams that the room holds. Someday I'll be sitting in this chair, watching my darling little son play on the floor. Or I'll be rocking in this chair and reading a book for the third time in a row; his heavy, sweaty head sliding slowly into the crook of my arm as he falls asleep. Or I'll be sneaking in to check on him during his nap time only to find that he's not sleeping at all, but has climbed out of his crib and begun tearing down all his clothes from the cubby. This room will hold so many sweet moments as this little boy begins his life here in the world, and I almost can't wait to get started!

There's still a few weeks to go, however, so I'm left here to dream. In the meantime, I suppose I'll work on these silly boxes. After all, we can't have this kid know his mom's been sitting in his room this whole time not getting anything done around the house!