So let’s have some real talk. Having a newborn in the house is tough and anyone that says anything different is either lying or trying to sell you something.
I called a lot of my friends who have kids and asked them, “is it supposed to be this tough?”
One friend said she hates parenting a newborn. I’m sworn to secrecy on which friend said that, so just take it as fact and move on.
Another mom said she liked to scream into her pillow and cry. Followed by another friend who had enough one day and put her baby in the crib, shut the door, went into her room and shut her bedroom door. “If they are crying, they are breathing.”
The other day, Reagan just cried and I held her and cried too. That put her right to sleep. Note to self: if I want my daughter to sleep, I should get to complete exhaustion and tears, she’ll go right to sleep as my tears hit her face and I’ll be a total wreck. Perfect.
So when my dentist apt appeared on my schedule, I kept telling Rob how excited I was.
“Rob, I have a dentist apt. on Wednesday and I am NOT changing it.”
Rob’s all, “Umm…OK, I can be here with Reagan it’s not a problem.”
I counted down the days…and then, it was here.
I had a nice drive to the dentist, called a few friends to exchange baby horror stories and I felt like a human being again. It was good to know that I wasn’t alone in my feelings that this is hard. A friend of mine said, “no one can prepare you for what you will go through b/c you can’t understand it unless you go through it.”
She’s right. Operating on three hours of sleep and trying to soothe a crying baby in your arms is difficult. And, EVERYONE goes through it. I think that’s why I’m frustrated with those moms who tell you everything is perfect, their baby doesn’t cry and they also made origami crafts while their baby slept all day. How productive and perfect!! Seriously, get away from me.
Back to the Dentist…I walk in and they all knew I was adopting, so they wanted to see pictures. I showed them pictures of Reagan and they just showered praises on how cute she was.
She is cute!
I don’t think I’ll ever get tired of people telling me she looks like a doll and that she’s gorgeous, and while I had nothing to do with any of her features, I agree that she is beautiful.
The girls in the office asked how I was doing and if I was getting any sleep.
I just laugh…”HA, yeah, I’ve been looking forward to this apt b/c I plan to take a nap once you put the nitrous oxide on.”
We all had a chuckle.
And then, it was my turn to get my teeth all cleaned and to get a nice 30 minute rest.
You might think, “she’s crazy, she gets laughing gas to get her teeth cleaned,” and I could honestly care less what anyone thinks of that. I can tell you I have sensitive teeth and gums (which I do) and I could tell you that I’m tired and I want to have a relaxing dentist visit (which is also true).
And so I did, and my dentist apt did not disappoint.
It was the kind of news that is etched into your memory forever. Like watching your child being born, except the complete opposite of emotions. Perhaps it is more like remembering where you were and what you were doing when the attacks on 9/11 happened. Because that’s what it felt like, and that’s what it was, an attack.
An attack on our 4-day old daughter’s health and future. An attack on my wife and I and the joy we had waited four long years to be a part of.
And there was nothing I could do…
It was a normal sunny Saturday afternoon to the rest of the world. But for us, this was our first Saturday with our new daughter. And this was her first Saturday, ever.
There had been a lot of firsts for me that amazing week. First time watching a childbirth; first time cutting an umbilical cord; first time laying my eyes on my new daughter; first time changing a diaper; first time feeding a baby…first time after first time, but mainly, our first child had arrived as promised for our adoption.
Promised not only by the birthmother that had selected Anne-Marie and I from hundreds of other prospective parents, but a child that had been promised by God. The path to this promise wasn’t exactly how Anne-Marie and I had pictured years ago when we first started dreaming of starting a family, but it was exactly how God had planned it all along.
Finding that path wasn’t easy. Following that path wasn’t easy. But for some reason, I thought that path would eventually begin to ease. I couldn’t have been more wrong.
That Saturday afternoon, my wife received a text from our daughter’s birthmother. The message was vague, but said enough to make the both of us start to worry.
“Doctor called about baby…worried about some test results…his #…please call me”
Questions immediately began to swirl in my mind, and I’m certain my wife’s. What doctor? Why did they call her? What tests were we waiting for results on? What could be wrong from those tests? Why would we call you (the birthmother) when we have the doctor’s number?
Anne-Marie immediately dialed the doctor’s phone number as she walked into another room as I stayed to watch our daughter meet her grandmother for the first time. There was so much joy in the room that I stayed behind in, but I could tell that the joy was being sucked out of the room my wife had gone into as she spoke with the doctor and his nurses.
Why did I stay behind? I need to be with my wife. She needs me to be there by her side. My daughter needs me to be there by my wife’s side and not next to her, even if Reagan doesn’t know it yet.
I left the calmness and joy of my daughter, and began to walk into the next room. There was heaviness in the air as I walked closer to my wife as she furiously took notes on whatever the person she was speaking to was saying. She glanced at me as I was trying to read the notes she was taking. The glance said it all, something wasn’t right. Something wasn’t right with our daughter.
A cry from our daughter came from the other room, and I looked back. Everything was ok there, but it wasn’t where I stood. I began to wonder, what could be wrong? How serious is this? She had just been tested the previous day for a heart murmur that had been cleared. Her EKG and echocardiogram both showed everything was ok. What more could there be?
Never ask that question. Whether it’s good or bad, there can always be more.
When her conversation finished and Anne-Marie had hung up the phone, she began to explain to me what the doctors had told her. She did a great job trying to relay the information she had just been told back to me, but I couldn’t understand what she was saying. It wasn’t because she was speaking unclearly or hadn’t taken good enough notes, but to me what she was saying all sounded like a foreign language.
The news was that my new 4-day old perfect daughter had been diagnosed with a rare genetic disorder called Glutaric Acidemia Type 1. After Anne-Marie explained the basics of the science behind the disorder, she then began to speak about the risks and possible outcomes.
Terrified. Easily the most frightened I had been up unto that point in life.
Angry. How could this happen? To us? To her? After all my wife and I had been through up unto this point, why? Why, why, WHY?
After putting our adoption story out there for the world, as well as our daughter’s diagnosis of GA-1, we received tons of emails, texts and phone calls. The outpouring of love was amazing and Rob and I were truly touched by it all.
So many people had those initial feelings that Rob and I did of, “this is not fair” and “why is this happening to you guys after all you’ve been through?” Rob and I put the video and blog out when we were ready…I told him, “we’re going to end up consoling people b/c they are going to have the same feelings we had initially…” b/c it’s a shock. However, there were more sentiments of “you guys are so faithful…what a testimony, God is using you, we are blessed to call you friends, we can’t wait to see Reagan’s story unfold.”
I definitely feel like God is using us…I don’t know quite in what way (lean not on your own understanding), but I get that he’s handpicked Reagan and us for something special. Rob and I were talking, and we agreed that it’s weird for people to call us faithful. Many times in the past few weeks, we’ve felt totally faithless.
For instance, sometimes I want Reagan to be two years old…b/c if you can get through the first two years without any major health scares with this disorder, it’s a huge hurdle overcome, reason being is that in the first two years, there’s so much development happening cognitively as well as physically, emotionally, and socially.
And then I want Reagan to be five or six and starting school. B/c once you’re that age, you will have a better idea what, if any effects, the disorder will or has had. By school age, the culmination of her social and motor skills, and all skills needed to attend school will be present. We’ll be able to see our deck of cards more clearly.
I’ve also caught myself looking online at stories from families who have a child with this disorder and it makes me so upset. While most children can fight an ear infection, cold, virus or fever on their own…they can spell disaster for Reagan. The reason we have to be vigilant at the first sign of sickness is b/c when you get sick, your body starts to break down proteins…well, she can’t break them down like everyone else and instead, acid will begin to build up and it can attack the brain. Everyone’s story is different and Rob reminds me that the stories I read online are not our story…we only have Reagan’s story and it’s still unfolding.
But what is her story? What is the outcome? I want to know.
The video I made was done with the purpose to tell the beginning of her story, but it’s also to remind me of those verses, it’s just as helpful for me to watch it…it’s like my very own pep talk to myself.
Even though I want a full disclosure from God and I want it now, I’m not going to get it. I can’t control everything…a life lesson I am learning at every corner. Only God is in control of her story, and I pray that her story is a beacon of light.
A little secret I’ll share with you…during the first two weeks Reagan was home, when we kept this diagnosis close to the vest, several things happened. Our photographer posted online about a local family in Central Florida who went in for a 36-week ultrasound, and the heartbeat was gone. I couldn’t even imagine. The day we arrived at the hospital for Reagan’s birth, I had so much anticipation for the monitors to be hooked up to our birthmom. I’d never heard Reagan’s heartbeat, until the day she was born. It was such a HUGE relief, and an even bigger relief when she cried. She was carried nine months in the womb of a stranger whose world God selected to collide with ours.
Not only did I read this woman’s blog of her infant loss, I’d heard of another woman that gave birth at a local hospital whose baby never took a breath. Heartbreaking, again.
But, there’s a third story; from a friend of mine I went to college with. She entered my life for only a season and made a HUGE impact on my life back in 2001. She is one of the few people that God used to totally change the trajectory of my life. I can think of a handful of people that God placed around me in college to pull me close to him and draw me away from the life I was living.
My friend was nine months pregnant and I remember looking at her FB page and seeing all the encouraging posts, “we can’t wait until she gets here!” and “you’re doing great!”…
A few days go by, and I go back to check her page out and it is filled with condolences; she lost the baby. She gave birth at home to a 10 lb baby, but the baby wasn’t breathing. My friend had also lost a lot of blood and both mom and baby were rushed to the hospital. The baby never made it.
How could this happen three times in the course of two weeks and I hear about each of these stories? In those first raw moments of digesting Reagan’s diagnosis and going through emotions I never thought existed, I would see these stories on social media (among other stories of suffering from people I don’t know that would, seemingly randomly, appear on my wall). Seeing other people’s suffering and comparing it to mine, I felt like our deck of cards was not so bad.
But why did I need to compare our deck to someone else’s?
What I began to realize in those first two weeks is that we all have suffering…that’s part of the deal when you’re on this side of Heaven. We live in an imperfect world. Instead of worrying about “what are people going to think” I just started to lean on God…not on my own understanding. What else can you do when you can’t understand the plan? It’s not my plan, it’s God’s plan, and I’m just walking along.
I know that might be construed as faithfulness, but like I said, there were times I just wanted to fast forward to the future, or hit the rewind button b/c I felt like we were living a nightmare. When I look online at other stories from children with GA-1, those nightmare feelings re-surface…I have fear, so much fear for the future. And then I remember that FEAR is a LIAR.
Instead of giving in to the fear, Rob and I make conscious decisions to enjoy what God has given and blessed us with, right now. Even though I want glimpses of the future, I want to enjoy and savor this stage. It’s a dichotomy. She’s the cutest teeniest tiny baby…and I know this stage goes by so fast and everyone says to savor it, so we are. We love those big eyes looking right up at ours when we feed her and change her…and we love watching her sleep…and in the light of day, we even love the midnight feedings, or 3 a.m., 4 a.m. and 5 a.m. (aren’t you full yet?) feedings.
We both try not to think about the disorder and I feel like we’re getting into our groove as parents. I say that as if we’re pros…we’re just a month in.
Rob and I truly appreciate your prayers, texts, calls, FB messages, etc. We are taking things one day at a time…one test result to the next and trying to rely on God for each moment.
*Praise Report – Reagan’s first test results came back after being on the diet and her Lysine levels were low. This is good, they prefer them to be low vs. high…but b/c they are low, the dietician is upping her protein intake. It’s way too early to say, but maybe Reagan will be more tolerant of proteins as she gets older. In addition, ALL of her amino acid levels were perfect!