Baby Noah...one year ago. It was love at first site.
That video was shot exactly one year ago today. New Years Eve 2010. Wow. What a year this has been…!
As I type this, there’s only 30 minutes left of 2011 and I’ve been thinking about this last blog post of the year all week. There’s a million things I want to say, but I’m having a difficult time trying to put them all into words. I want to publish one last post in 2011 so I’m going to postpone the other ideas I had for this post (for now) and just try to sum up how I feel tonight; exactly one year from when I recorded the video above.
Baby Noah...one year ago. It was love at first sight.
Edit: This post ends up being really long. I didn’t mean for it to, but it did. If you don’t have time to read this entire post, let me just it all up for you:
I’m in awe of God’s grace and kindness towards our family this year. In complete awe.
Ok, feel free to go and eat some blacked eyed peas now if you’d like. 🙂
On Dec 31, 2010 my wife and I just celebrated Noah’s 2 week birthday. It was a wonderful, joyful day…but we were more scared than we had every been about anything in our life. Ever. Let me explain.
We learned that our son was born with Down syndrome four hours after he was born. We never saw it coming. We were completely blindsided. A few days after Noah’s birth my wife and I walked back into the through the same door we had walked out of just a few days previous as we headed to the hospital to welcome Noah into the world. Never in a million years would we have thought we’d be walking back into our home with our new son…..who also happened to be born with Down syndrome. Talk about the surprise of your life. 🙂But it was ok. We loved Noah with every once of our being. We were excited. We were nervous. We were scared. We were confused. We were hurting. We were joyful. It was as if we were injected with every single emotion a person could feel (and some I didn’t even know existed.) It was a very odd feeling. But out of all the emotions we were experiencing, there were two that always rose to the top: love and pride.
We loved Noah. And we were proud of him.
Noah's getting some Face Time grandparent love!
About a week after coming home from the hospital with Noah, and as we started to catch our breath, we received a call from Noah’s pediatrician. She said we needed to come to her office right away to discuss something that had come back on Noah’s newborn screen. As we rushed out the door my wife, a pediatrician, assured me it was no big deal, and it was probably just an issue with his thyroid. When we arrive at the pediatrician’s office we’re told that Noah’s newborn screen had come back positive for Glutaric acidemia, type 1 (GA-1) a rare genetic disorder that has nothing to do with Down syndrome and can be deadly! (In fact we were told that if Noah had both Down syndrome, and GA-1 that he would likely be the first child ever to have both. Just great.)
We were told it would take about 90 days to know for sure, and during that time they would need to run a series of tests on our son….one of which being a DNA sequence. (You can read more about everything on my personal blog.) My wife made me promise not to google GA-1, and I didn’t. I was to scared (and I had no idea how to spell it!) But later that night she sat me and my in-laws down and gave us a packet of information…..and it was scary. Very scary. (At the time I didn’t have this blog, but wrote about it on my personal blog.) As you can imagine we were overwhelmed. First Down syndrome,and now this. Talk about kicking a guy while he’d down (pun intended!) 🙂
We wept that night. That week. That month. We were scared for our son. We just had our first Christmas with our first child, and we were about to have our first New Years Eve celebration with him…this was supposed to be a time of great joy in our life, and it was…but boy was there also a lot of pain as well. The doctor told us to “try not to worry about this” and to “just try to relax until we get all the tests back…”
Easier said than done.
On December 27, 2010 (the night we found out about all of this) at 12:59 a.m. I sat alone in Noah’s nursery weeping. I was afraid. I was scared. I felt helpless (I was.) I felt like no one in the world could relate to what I was going through. As I wept, I wrote the following words (which I’ve never shared with anyone, until now) in my journal (yes, I keep a journal, so what…) 🙂
…I’m more scared than I’ve ever been. I am nervous, anxious, and many more things. I want to know my son. I want to teach him about God. I wonder if I’ll ever get to do that now. I’m scared of Noah dying. GA-1 looks very scary. What will we do if he has this? Will there ever be happy days again? Will worry overcome me? Will life ever be normal again? Will my wife be sad forever? Will I? I feel so alone. So worried. The only thing I know to do is pray. I believe God is on His throne watching everything. This is no shock to Him, or to Noah. Today I am fasting. I’m not even sure why. I just want God to know I’m serious. Reggie, his wife, and Brandon are fasting with me. We are begging God for a false positive for the GA-1 test. We will praise God either way, but a false positive sure would be nice. I love Noah more than I every thought you could love someone. I feel like my heart is going to explode it is so full. I’m also in deep pain because I can’t “fix” my son. I can do nothing but pray, which is actually the best thing to do. Father, give me peace. Have mercy on Noah, and to us. Please give us a long time to enjoy Noah. He is my son. As a Father your understand the pain of loosing a son. But Father would you spare us that pain! I know we don’t “deserve” that are son get better any more more than any other parents praying this same prayer tonight, but Lord I beg you. I feel like if he has this, my heart will be sad forever. I feel like I’ll worry forever. Although I know you can, and do, give peace to us when we go through something difficult, I don’t want it to be this way. Please God, answer our prayer. Please give Noah a false positive for this test. Either way Lord, please give us peace to walk through this. We are your children, and we are afraid. Please God show your glory through this (which you will do no matter what the outcome.) Lord give me the strength to say ‘thy will be done,’ and the strength to commit my son to you. He is yours, but Lord we love him. Thank you for all of our blessings, and please give us peace and rest.
Wow. Just typing that out brought back a rush of emotions. I remember weeping so hard as I penned those words that I had to stop writing a few times. I remember never being more scared about anything in my life before. I remember never crying so hard about anything in my life before. I also remember never praying so hard about anything in my life before. I remember just being honest to God about how I felt, and pleading with Him of behalf of my little 2 week old son. If Noah did have GA-1 I knew that God was the only One in the world capable of healing him, and the only thing I knew to do was pray…..ask every other Christian I knew to pray with me as well. And we prayed hard. Every single day.
I believe in the power of prayer. I believe prayer changes things. I remember constantly begging God to answer one prayer for me. It was a prayer I never dreamed in a million years I’d be praying. I prayed
“Dear God please just let my son have Down syndrome…please.”
I never thought in a million years I’d be begging God to just let my son have Down syndrome. But I was.
I was scared. GA-1 can be deadly. Down syndrome isn’t. GA-1 is a big deal. Down syndrome isn’t. And every night I would asked God to, “please just let Noah have Down syndrome.” This time last year this is what I did: I prayed. And waited. And I waited. Prayed. Wept. Hugged my wife. Played with Noah. Wept. Laughed. Hugged Noah. Prayed. Worried. Prayed. Worried. Prayed. Held Noah. And waited……
And that is what was gong on in our life this time last year. Heavy stuff huh? In fact we were at the hospital on New Years Eve last year as we watched our 2 week old baby scream as lab technicians stuck him with needles over and over again while they tried to find a tiny, new born vein on him that big enough to allow them to draw blood. After the tests were finished we came home, and I recorded the video I posted above. And we went to sleep scared. Anxious. Worried, and madly in love with a two week old boy. We would just hold him tight and wish that our little boy would just have Down syndrome.
And that’s what was going on in our life one year ago today. Pretty crazy way to ring in the New Year, huh?
Wanna know what happened? Well…after running all of the tests (including a DNA sequence) we received the results early. And guess what….
This text message was epic!
…it turned out Noah didn’t have GA-1, and the original test was a false positive! (At least that’s what the Doctor’s say…..me on the other hand….? I think God answered my prayer request that my son would just have Down syndrome. 🙂 Guess I’ll have to wait to find out if I was right.
It's a year later, and I'm even more in love with this kid!
Today I’m almost in tears as I write again. But this time the tears are tears of joy. Pure joy. Tonight I held my healthy,1 year old son as he fell asleep (actually he isn’t 100% healthy tonight…he has a little cold.) As I held him I thanked God for the faithfulness, grace, and love He demonstrated toward our family his past year. He gave us peace when no one else could. This time last year when we were hurting people brought us gifts, movies, food, you name it….but none of it gave us true peace. Only God could do that. And He did. He gave us peace in the middle of our darkest days.
I could tell you so many stories about how God worked in our lives during that time, but I’ll just say this. We prayed every night for God to give us peace and joy in the middle of all that we were going through, even when it didn’t seem possible to have peace…..and guess what. He did!
A few weeks after I wrote that entry in my journal my wife and I begin to ask each other, “Today was a good day for me, what about you? Did you cry today” and eventually one of us answered back, “Actually no..I didn’t! Wow!” And we realized that God has transformed our hearts. Our fear had 100% been replaced with joy. In fact by the time we received the news that Noah didn’t have GA-1 we were 100% prepared (and ok) with whatever results we got. It sounds crazy. Impossible even. But it’s true.
I can honestly say that I now know, first hand, that in our time of need God will supply us with everything we need to get through it. You’ll never think you’ll be able to get through it before you are in it. In fact you may even say (as I did the night before Noah was born) that you don’t think you can “handle” (fill in the blank with your it.) But guess what…when that it comes, you realize that God is bigger than your it.
And He will amaze you. And He will cause you to fall in love with Him even more. And you’ll come out of you it saying that it was the best thing that ever happened to you because now your faith is a million times stronger. And the next time something difficult (another it) comes your way you’ll be less worried because you’ll be able to remember the time God brought you through your it.
The one tough thing about all of this is that you have to go through your it. There’s no growth, like the growth you experience during hard times. Until you go through something really difficult; I mean something so difficult you’re praying prayers like: “God, I’m scared my son is going to die,” you’ll never fully understand the extent of the growth I’m talking about. It’s when you find yourself at a point of desperation and have no choice but to trust God, it’s there, in that scary place, where the greatest growth and deepest understanding of God’s provision and care for you occur.
God has really worked in this little boy's life this year!
It’s been a year since that all of that happened and here I am on the other side of it; alive and more grateful than ever. This has been the very best year of my life. Without a doubt. I want you to know that no matter what you are going through, in good times and bad, God cares about you. He truly does. It’s more than just a cliché. More than just a saying. It’s the truth. God not only cares about what you are going through, He is productive. He doesn’t just sit there. He can really give you a peace and joy in the middle of what you going though. Trust me, I know. This time last year all I wanted to do was weep. He turned my weeping into joy. And He can do the same for you.
He wants to give you a joy and peace so deep that everyone else in your life looks at you and wonders, “How could they be smiling at a time like this?” Of course, it doesn’t always mean things will turn out the way you want them to. Sometimes we don’t understand the story God is in the middle of telling. And that’s ok because no matter how scary things get, you can always trust in the One that still holds the whole world in His hands. And you can go to sleep at night trusting in the fact that your it is fully, 100% in His hands. That you can cast your cares and burdens onto Him, and He will give you rest. And man….that rest is sweet; trust me.
Wow! it’s almost 5:30 in the morning now, which means it’s 2012. Since it’s the start of a New Year how about I offer you this simple, yet life changing, New Year’s Resolution for 2012: Trust God. That’s it. Instead of worrying night after night about all the “what if’s” and it’s in your life…what would your life be like if you (and I) just start trusting God more. Can you imagine how different your life would be if you and I truly lived our life trusting in the fact that God still holds the whole world in the palm of His hand? Can you imagine how great 2012 could be if we lived each and every day as if that was true? The good news is…it is true!
Let’s start this year off right by committing to trust God in everything this year….even the really scary stuff. Are you willing?
It won’t be easy. But it’ll be worth it.
“When his people pray for help, He listens and rescues them from their troubles. The LORD is there to rescue all who are discouraged and have given up hope. The LORD’s people may suffer a lot, but he will always bring them safely through.”
– Psalm 34: 17-19
How about taking a few minutes to pause, and ask God to help you commit all of your worries, fears, and anxieties to Him this year.
Are you up to the challenge? Be sure to let me know in the comments! Here’s to a great 2012!
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Wow. Thank you!! Xx
Thanks I ramble sometimes (all the time). Sorry. :)
Though my 10 month old son doesn't have Down syndrome, I came across your blog when I was trying to find out the average time intervals between crawling, cruising and walking. I read your post about the Leukemia scare and how traumatic it was to hold your little boy down for the blood draw. Perhaps you are familiar with it already, but if he has to have blood drawn routinely, you should consider using Emla cream to numb the area. My little sister has hypoplastic right ventricle, tricuspid and pulmonary atresia and had to have her blood drawn often from the time she was an infant and the Emla cream made it so much less traumatic. (Though at 25 years old, I don't think she uses it anymore:-) ) I too know it's traumatic to the parents...even his vaccines. We have a new pediatrician...we were fired by our old one. she made a crazy misdiagnosis that made no sense (said it was tethered spine, after I took him in because he was falling more and crying when I laid him on his back, despite the fact that he was moving his neck more than ever, crawling, and pulling himself up. It was obvious to me that it was positional rather than postural. She wanted an MRI of his spine, which would require sedation and I felt it an unnecessary risk, so we didn't have it done. Plus, he had just gotten over a cold and I felt it was related.... my father in law is a neurologist, and pulled strings for us to see a pediatric neurologist who agreed the diagnosis made no sense and said it was probably vertigo that would go away on its own and sure enough, it did....She also said at every well check that it's a waste of time to see the pediatric cardiologist for his murmur....that he was fine, despite the family history of congenital heart defects ....finally at our seventh month check up, I said "you have to understand where we are coming from....my sister's pediatrician said the same thing, and had my parents not acted THAT NIGHT she would have died. Lol, our ped quickly brought in the referral form, and it turns out he has mild pulmonic stenosis (which I aoooooo hope never has to be repaired!)...but I later got a letter saying they "have become uncomfortable with our patient-physician relationship." Lol we were uncomfortable too after all that, and we just had fundamental differences in things like breastfeeding and cosleeping, and we already had a new one picked out. I just wish we fired hem before they fired us! Ha!) I'm thankful the new ped lets me nurse him while he gets his shots...I think it's less traumatic....previously we got them done at the health dept and they made him lie on the exam table with his legs pinned between the table and the nurse's body. Of course blood draws are more painful than vaccines and I know many times little kids have to be poked more than once. I never imagined how much it would hurt me to see my baby hurt! Lol not sure why I rambled on!
I love to read your blogs...Brings back so many memories of my fears and the unknowns..And I can tell ya that the love you have for Noah will just keep growing..The bond I have with my son Mathew is amazing!!!Mathew is 18 now and I thank GOD everyday for letting me be his mom.
Thanks for the kind words Tracie. We do indeed love this little boy beyond words.
So glad to here about your son Matthew. You sound like an amazing mom!
:)
By the...you should grab a Gravatar ---> http://en.gravatar.com/
Thanks for your honesty. Trusting God is easy during the good times, but it is most real when we don't know the outcome of our faith. Thanks!
So true Chris!
Hope you have a great New Year!
Thanks again, Noah's Dad! I have appreciated your blogging throughout these months, and may God continue to be honored and glorifed! I understood everything of what you wrote, having gone through the exact same emotions when Candice, my first child, was born. At some point, I would love to share my book with you, FOR THIS CHILD I PRAYED, which was on Amazon for awhile. It is an account of my journey with her, though she is now in Heaven thirty years. (Unbelievable the passage of time when in my heart and mind, it is as fresh as yesterday!) It has been a continual journey, though, as I share my book constantly even now!! Her life still touches hearts, and that is what counts for eternity! I would be thrilled to send you a copy....
May the New Year unfold with many new discoveries with Noah, and our God Who makes no mistakes..."As for God, His way is perfect."
Praying for you and your dear wife,
Judy
@Judy,
Thanks so much for your kind words. It's great to hear of your life for your daughter. You sound like a great mommy! :)
Thanks for the book offer, it sounds like a great book. I'm not sure I'm ready to read it yet though. I'm still sort of new to all of this. :)
By the way...you should grab a Gravatar.... -----> http://en.gravatar.com/
Thank you for sharing your story! I truly believe God had a hand in your story and in all of our lives! I know he has blessed us tremendously and helped us through many difficult times!
@Gayle,
Thank you so much for the encouraging words. It's been our honor getting to know your family as well. I look forward to getting to know you guys even more in 2012!
I hope you guys had a great New Year!
By the way....you should grab a Gravatar..It makes commenting more fun: ) ----> http://en.gravatar.com/
Thank you for giving us the gift of your story, your faithful walk, and the encouragement through Christ. I read your entries, comments, and video posts daily, and it continues to be a serious and thorough resource as our family raises a wonderful precious son who happens to have DS. On June 14th, this was the furtherest path from our lives On June 15th, 2011, it is our only path and one that I wouldn't change for anything. Praise God and Thank You!
@Carol
Thank you so much for those kind words. It's great to know that all of the work we put into this website is encouraging people. It's so much fun getting to meet all of these new parents that are around the same age as Noah. I can't wait for us all to meet up somewhere! (Maybe we should all try to plan a fun vacation together some day!) ha,ha..wouldn't that be fun!
I hope you guys have the best year ever this year!
You should grab a Gravatar as well! It's fun! ----> http://en.gravatar.com/
This is a hard one for me. Honestly.. this has really challenged me!! I love your posts it helps me through the bad times and encourages me and my husband to know our Poppy-India will be just fine. I admire your faith. I pray that one day I too will have my faith back in such buckets. But this is a real challenge.. one that I was not expecting... To give all your worries and fears over to god?? .......But, I AM UP FOR IT! Thanks for hitting me over the head with this word. Who would of thought a family thousands of miles away could kick me up the butt so hard! thank you from the bottom of my heart. xxxx
@Tracy,
Thanks of the kind words, and for sharing with everyone. I just prayed for you and your family. I hope you know that God is ready to make this the best year you've ever had in regard to your relationship with Him. Seriously. He's been ready!
Let me know if we can ever help, or pray for you guys!
I hope 2012 is the best year yet for your family, and your relationship with God!
By the way...grab a Gravatar ----> http://en.gravatar.com/
I agree, it is much easier to have faith when all is going according to (our) plan. The true test? Having that faith to guide you through His Plan.
Enjoy the New Year!
Thanks for sharing your story. I find great inspiration in your posts.
Thanks Shelley, I really appreciate the kind words.
Here's to hoping and praying that 2012 is packed full of us having the kind of faith that trusts God's plans in everything. :)
I hope you had a great New Years, and for the encouraging words!
Wow. This post brought tears to my eyes. Thank you for your honesty. I can only imagine the fear you and your wife felt while waiting for the GA-1 test results. Praise God that Noah "just has Down syndrome". Happy New Year to you and your family!
Thanks Anna! We are to. Talk about a load off our shoulders.
This New Year was much more calm than last year'!
Happy New Year to your and your family as well!
By the way...your our 3rd most popular commenter...you should have a Gravatar! ----> http://en.gravatar.com/ :)
Thank you for that post! God is so good and has a perfect plan, which is often hard to see. I love hearing stories about how it's all unfolding. And the power of prayer! Happy New Year!
Thank you very much! I really appreciate the encouragement.
His plan is good....always. Even when we can't seem to find the 'good' in it. :)
Happy New Year to you and your family!