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The above is an unpublished post I wrote one month after Henry was born.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.