Smiles with Myles - Volume 13

Every baby has a birth story. I personally LOVE to hear birth stories! I love hearing how a baby was born, how it came to its mother/father, how everyone was feeling... I love to ask a million questions. I find it so fascinating. It's such a special moment.. one of those really memorable times in life. Whether it goes as planned or spirals out of our control, it is a pivotal moment in life... something that changes you as a person. A new life into the world... it is incredibly moving... supernatural. And I think magnifies the Creator that we serve! I have been wanting to write out Myles' birth story for a while now. And since it is Down syndrome awareness month, I figured this was as good a time as ever. Since I don't hand write anything, I figure this is a great place to save it and it can be a testament for all of you to see... the Hand of God moving to prepare us for little Myles. Grab a cup of coffee if you are going to read... it's like a very long chapter in a book :)

A wonderful place to start any birth story is in Psalm 139.... Read the whole chapter, but here is vs. 13-19:
"You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered! I can’t even count them; they outnumber the grains of sand!   And when I wake up, you are still with me!" We spent A LOT of time here after Myles was born. It became very real to us and very reassuring that any child, special needs or not, is not a mistake... God is there in the formation of that little body, and while it may seem like an "unfortunate" thing to us as a human when a child is born 'incomplete', He is already planning and preparing a way to bring glory to himself through this new life. We live in a fallen world, and things are not perfect, even our bodies and minds. But that is no obstacle to God. He uses these weaknesses to show His strength -- all of this is to bring him praise. I hope this story points you to Him... the Creator and Maker of ALL things. The Sustainer of the universe... the giver of life... the One who sent Jesus to save us!

Some of you may remember that Myles was born 10 days early - June 30 instead of July 9. The week I delivered, we were actually in the middle of selling J's car and buying another car off eBay. The new car was in Cleveland... we wanted to fly him one way there to pick it up, but he would have been gone for about about 36 hours, and we just weren't sure this was a good idea so close to my due date. So we opted out. Thank you Lord for giving us a push to NOT do that. My water broke the night he would have stayed over night in Cleveland! That was the first thing I said as I got back in bed around 3:30am after googling what it's like to have your water break (I thought I might have just peed the bed...??). "Jonathan!! (kick, shove, kick, shove) My water broke! I can't believe it... you could have been in Cleveland tonight. I'm so glad you're here!!"

I went back to bed b/c I felt fine and figured I'd just call the doc in the morning. Slept until about 7am. Got up. Again, the Lord was gracious... it was Jonathan's very first day off contract. (As a principal, he is technically not on contract for most of the month of July... June 30th was his first day off). So he felt "free" and it was so great not to have work hanging over us. It was a beautiful morning. Jonathan took the boys out to breakfast then dropped them off at the Berry's. I took the morning to get ready, shower, etc. Still no contractions and it was around 9am. I called the nurse and she said come on in when we were ready so they could check and confirm that the water really broke. Ok, cool. We got our bags in the car - and had to borrow one of the Berry's cars. We drove separately to the Driver's Bureau. The lady who had bought J's Mazda was actually supposed to meet J that day to transfer the title. So we had to leave the car in the parking lot, and drive the Berry's car since we were down a car and they needed the van. It got a little confusing, but it all worked out.

When J was in the BMV, I called my friend Pam to tell her I was going to the hospital! A little earlier than planned... I remember her asking me how I was feeling. And I can still remember exactly how I was sitting and the warmth of the sun in the car. I said something like, "I feel good, excited... always a little reserved before going into labor b/c even though you aren't expecting something to go wrong, you always know it is very possible." I don't believe it was any premonition, b/c I honestly have felt that way before every labor. We've had a variety of special needs children in my immediate family, and it's been ingrained in me for a long time that it is truly a miracle to have a healthy baby. There are so many intricacies, that it's amazing a baby comes out completely fine!

The day was beautiful, sunny, we walked around the hospital... water had been broke for over 12 hours and I was feeling great! Not even a tiny contraction. So they decided to start a tiny bit of petocin around 4pm. And that worked. I think by 5:30ish he was out! Very easy... hardly had to push he was so small. Just 6lbs 9oz. His red hair was the first thing I noticed! And I also noticed the fact that he was very quiet. He let out a slight whimper, and I asked the doctor if he was OK b/c he was so quiet. They said, yes, yes, he's fine! No one had any inkling that anything was abnormal. My doctor has been delivering babies for over 30 years so I had no reason to doubt him.

Somewhere in that time frame we had visitors. My mom/dad/sister I think. They made it into town and were in with us visiting and holding the baby when a nurse came into to do a 'nursery' check. She was doing all of the measurements, etc. She made all of her final notes and then said, COMPLETELY casually, "Everything looks great. He is very healthy. The only thing a little abnormal is that he has a simian crease on one of his hands, that's when the line doesn't break... it goes straight across. That's a marker for Down syndrome. But nothing else appears to be pointing in that direction, so I think it's just a fluke. But I'll mark it in his chart." And then she left. The strange thing too is that she said it with guests in the room. I can't remember if we even discussed it then. I don't think we did. I think we were like... umm... OK.

We had more visitors, and I think the first time we were alone was around 11pm. Like all parents, we were inspecting him, and thoroughly enjoying his little body all to ourselves. Jonathan said, "Did you hear that nurse earlier? That was kind of weird." I said, "Yes... but he doesn't have Down syndrome. Don't you think we'd be able to tell or the doctor would have said something?" He said, "Yeah, but look at his neck. It is kind of short. Isn't that one of the characteristics?" I think I smacked him at that point and just laughed... but I did think to myself, weird... he does kind of have a short neck. But never mind... he's fine!!  We went to sleep and never thought anything else about it.

The next morning all the routine stuff was being done. Our pediatrician, who we love, was in Spain and just getting back. So her partner was in and was coming to see Myles until she got back the next day. He is a nice older gentleman, but has a very thick Indian accent that I find extremely difficult to understand. He took him out and did the check... which our doc never does, she always checks the baby in the room with us. But oh well. He came back in without the baby. He said, in his VERY thick accent (and he is very LOUD), "Your baby is lovely. He is doing well, and appears to be healthy. He has slight features of a baby with Down syndrome. Slanted eyes, fold on the neck, simian crease on the hand, and hypotonia (low muscle tone). You know, babies can have all of this and not have Down syndrome, but just to be sure we are going to run blood work on him. It will take 2-3 days. He is a lovely baby, lovely baby! Any questions before I go?" I, for the life of me, cannot remember if we asked any questions. If anyone did, it was probably Jonathan. I'm fairly certain I was just trying to process what the heck he just said. He left and the head nurse from the nursery brought Myles back to us. By then, I just wanted to get him in my arms. It's strange what frightening news will do to you when it involves your child. For me, it made me want to touch him, hold him, keep him to myself. And not let him go.

The nurse was very kind. She basically re-explained everything the doctor saw. She said, "You know, typically when we see newborns with Down syndrome, it is so plain and clear you know the minute they come out. With Myles, it's not been that obvious and so I think a lot of us are baffled." Ok. She was very helpful, and our room nurse that day was Edith. She was so, so wonderful. Older, and extremely helpful as we were working through all of the information. As soon as the room was quiet again, J and I started processing... ok, who do we know with Down syndrome? Um, no one personally. Corky. That was all we could come up with. Oh, and one kid in J's building last year who was in preschool. Of course, we googled Down syndrome and looked at all of the characteristics. Then we are looking at Myles and comparing. It was all so gray... he kind of had slanted eyes, kind of didn't. Kind of had a short neck, but don't all newborns?

It was time for circumcision and my OB came in to do that. I love my OB. He is so great and I have enjoyed every pregnancy b/c I love getting to see him and his nurse. He came back after the circumcision, and apparently our nurse had pulled him aside and told all that was going on. He is Italian and has a strong accent too. He was fired up... saying, "This baby does not have Down syndrome. I have delivered thousands of babies, I would know it if he did. I know the minute they are delivered." He went on to give us more reasons why... After he left, we felt more like, Ok, crap. Who do we believe here? We had this feeling we were becoming the talk of the floor. And I started to feel claustrophobic... like I just had to get OUT of the building with my child and run away! Thankfully I had Jonathan... who was seriously so calm. He was like, "Michelle, even if he has Down syndrome, it's OK. Nothing changes. He's ours either way and we're already in love with him. It's OK. God makes no mistakes. This is no surprise to Him."

I knew he was right. Even though I loved my OB and trusted him fully, I knew deep down that he is not a pediatrician, kids aren't his thing. He might see them when they come out, but he's not the one examining them. We started doing some more googling, watched a few segments of Life Goes On so we could refresh our memory of Corky, and joked around like we always do b/c we love to laugh and cry at the same time. It's so much better than just crying... There is nothing like laughing, and then going right into a deep gut-wrenching cry... and then laughing again with tears just running out. So, that's just what we did. And it was good.

The day unfolded... that night they took Myles to the nursery to do some stuff and Jonathan fell asleep and didn't go with them. They said they'd have him back in 5 minutes... 20 minutes later he wasn't back yet so I started to pace. I walked out in the hallway and they had him under some machine... apparently he was crying and started turning blue which meant his oxygen levels were going down. I was very frustrated and even more upset with J b/c he was just sleeping through all of it! :) When they finally brought him back, I wanted to punch the nurse. But I kept praying and saying, "Lord, no one here means any ill-intent. They are just doing their job. Please help me be gracious." And He did. Thankfully. B/c I'm sure I would have been moved to a whole new floor if I would have punched her :) But after this episode and how vague the nurse was, I knew something was up.

The next day we wanted to go home, but they wouldn't release us until we saw our pediatrician. Thankfully she was back. She called me and said, "Michelle, I wanted to come up earlier today, but I wouldn't have had enough time to spend with you. I'm coming at 5pm so I can spend as much time as we need. I also ordered an EEG and an EKG and am having the cardiologist meet us. He's out golfing, but I begged him to come and he said he would meet me here. He's the best. You'll love him." Click. What? Right after we hung up, my OB walked in. He was going out of town for the wknd (It was now Friday, July 2nd... going into the holiday wknd). He hugged me and I cried. He said, "Listen, I really don't think anything is wrong with him. His heart is strong, he is going to be fine. I'm going to watch them do the EKG and EEG. It's Ok. They're just following protocol." Shortly after that, the nurse brought us down a packet of info that they have on Down syndrome. "Just in case... you can start flipping through some of this information." she said.

By this time, we could have been, and probably should have been, very confused. However, I think the Lord was breaking it to us easy... we knew deep down the direction this was all headed. And it was better to plan in that direction, and be told in the end that he was fine, then to spend time denying the possibility of the diagnosis. So that's what we did. While they were doing a bunch of tests, we asked if we could be released from the floor so we could go walk outside. Wow, that was good. We really needed the break away from the floor. I called my sister... Meagan, and it was so good to hear her voice. I gave her the newest info. And I think J and I just started imagining what this was going to be like.

The only thing we could come up with was... wow... the Lord would choose US to give a special needs baby to? What a big responsibility. What an opportunity. What an impact this will have on Henry and Wyatt as they grow. What an impact this will have on our church. What an impact this will have on our families. What an avenue this will open up for us to interact with a community of people that we otherwise might never cross paths with. I can't think of once that we ever felt devastated... of course, you grieve, I think more for the child, the fact that life might present more challenges along the way. And the fact that Down syndrome... in a way... is an 'imperfection' in the world's eyes. But never did we feel sorry for ourselves or our kids or wonder why we had to be the ones? Neither of us felt a "loss" or a "let down" or a "wish we could take it back" or "what did we do to cause this" type of feeling. I'm not sure how else to explain it other than the Lord's grace in our lives... the confidence we could find in Him that He makes no mistakes... that He creates in the womb... He forms... how could we deny that what He allowed to be created in my womb was good? How could we deny that if we are in Him, all things work together for our good and His glory? To us, Myles was perfect. And He was going to be perfect for our family. We were certain of that.

When we got back to the room, it was about time for Dr. Seiler, our pediatrician to come. She showed up around 5pm. She took Myles from us, unwrapped him, undressed him. All the while, she is just caressing him, and kissing him, holding him... telling us about her trip to Spain, how the girls were, how her husband was... then she just smiles, and as the tears started to run down her face, she says, "You are going to love this journey you are about to embark on. Myles is so precious, and God has chosen you to have him. What a gift. Don't be scared of what is to come. We are going to walk the road together, I will be with you all the way, and God will be with all of us." So I said, "You mean you think he has Down syndrome? I mean, that's the way you are talking." She looked at me and smiled through tears, "I'm certain of it."

Big tears came to the surface... and I started to feel a little like I couldn't breathe. I couldn't look at J. We knew we had one more consultation to make it through. The cardiologist arrived. He was wonderful. Truly, truly wonderful. He looked over all of Myles' test and said Myles looked great. Basically, he needed a few things re-checked, but for now, we could go home, enjoy the wknd and he would see us back the next week. All in all, the major things he was looking for that are so very common in babies with Down syndrome were absent, and we needed to follow up on a few minor issues only. This was HUGE. About 60% of babies have major heart defects. He said, "I will say one thing before I leave you today. My patients with Down syndrome are by far my favorite. As a whole, they are the most happy and pleasant individuals. Myles will enrich your lives beyond your dreams... You are going to love this baby more than you ever thought you could." With that, he left. Dr. Seiler said we could be released, she hugged us, and she left. And when the room was empty, the floodgates opened wide. We cried so hard and hugged so long out of thankfulness that his heart was healthy, he was ours to keep, and we could go home. We felt relieved and at the same time, filled with wonder as to why he should even be this healthy upon birth... so many others suffer more. We were so grateful. We couldn't wait to take him home with us.

The next morning, the Berry's brought the boys home. I do remember my eyes that day being so puffy and they hurt. I was so happy to see Henry and Wyatt. Funny how our kids can fill a hole in our heart... they don't even know it. It was so good to have them with us again. And of course, so good to be with the Berry's. To laugh with them (they will tolerate our sarcasm!), to cry with them, to have them there when Dr. Seiler called to say the blood work did confirm Trisomy 21. What a journey... that first month we rented the first season of Life Goes On. It was fun to watch Corky in a whole new light now... it might sound strange that we did that. But it was actually really good for us and made us smile.

The Lord brings much encouragement through his Word in difficult and uncertain times. It is true that it's many times through suffering when pieces of His Word become more alive and real to us. He is a refuge to those who run to Him... His very name is a strong tower... the righteous run into it and they are safe. Thank you Lord for saving us, for giving us Henry, Wyatt, and Myles, for letting our hope be in you and not the diagnosis!!! What an awesome God He is! And all in this, through the many trials and joys we go through with all three boys, He is preparing a way to make his Name be glorified -- it's not about us, but about Him. I pray that we will always remember that.

I Peter 1:3-7 says, "All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus Christ from the dead. Now we live with great expectation, and we have a priceless inheritance—an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. And through your faith, God is protecting you by his power until you receive this salvation, which is ready to be revealed on the last day for all to see. So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world." In that first part, it says that if we are born again in Christ, we live with GREAT EXPECTATION and we have an inheritance that is priceless... beyond the reach of change or decay. What an awesome, awesome truth.We are so thankful for Myles. So thankful for everyone that has encouraged us along the way. We have learned so much and know that there is much more to come.