Love/Hate Relationship
Words will never be enough to explain the fear my husband & I faced for the first 2 weeks of our daughter's life. The day after she was born, the neonatal doctor covering at our hospital knew something wasn't right. When he first mentioned the word syndrome, the only thing that came to mind was Down's Syndrome and they already told us she didn't have that. What other syndrome was there? He explained there a so many rare syndromes out there, and that they will do a genetics test to determine what specific syndrome Arianna has.
In the NICU, they threw more than one syndrome at us. It felt as if the Residents had bets going on who was going to diagnose her correctly. It felt like a dream. We kept telling them why we didn't think she had a syndrome. I mean, she's our baby. Those things only happen in movies--this is just a dream isn't it? But there's no coincidences in medicine they say.
They told me not to google. But how could I not.
There are so many syndromes out there.
Finally, a long two weeks later, the Genetics Doctor came to Arianna's bedside. He examined her for himself. Verified information that we already knew (eating problems, webbed toes, hearing loss). It seemed like he talked and talked and talked. Finally, he gave us the name of the syndrome.
2q37 Deletion Syndrome.
What? How am I going to remember that? What does it even mean? Is it common? Will she live a normal life? Is she going to live? Will things be ok? What happened; why us; we were supposed to have a healthy baby....
2q37 Deletion Syndrome. Oh how I HATE you.
You are the reason why my daughter needs a feeding tube. Why it takes so much more work to be able to lift up her head. Why she can't hear us. Why she isn't "babbling". Why her lip droops when she cries. Why we have more appointments than most families. Why I needed to learn all these medical terms and how to work nicely with insurance companies. Why I needed to go from being a manager to a teller. Why our baby girl needs hand splints and a helmet.
You're the reason why I can't sleep at night. Why I have horrible thoughts going through my mind. Why did you have to take away our happily ever after? Why us? What did we do? Didn't my husband and I experience enough pain?
2q37 Deletion Syndrome. Oh how I LOVE you.
You may have "taken" so much from our baby girl, but you left enough for us. You're the reason we smile for the smallest reasons. You're the reason why we learned not to take things for granted. Why we've become so educated on reflexes and reaction. You've increased my tolerance for things I never thought I could handle.
You're the reason we have met some of the most amazing people we know. You're the reason we smile at strangers. You're the reason why I can spend time with my daughter, rather than having some one else be with her all day. You're the reason I can truly find the good in everything.
You've taught us unconditional love. You've taught us patience. You've taught us how strong and brave our baby girl is. You've taught us who we can count on, and who we can't. You've made our baby girl who she is. And we love you for that.
Everyone tells you that having a baby is going to change your life.
But for everyone, it's a little bit different.
We were prepared for our lives to change.
We weren't prepared for them to be flipped upside down and have everything we've ever known tested.
It was an adjustment. I remember sitting in her nursery bawling my eyes out. I couldn't wrap my head around any of this.
It gets easier. It's amazing to see her grow and flourish.
Not everyday is a walk in the park. The smallest set back can unravel me.
Just the other day I didn't think my husband would be home anytime soon. The poor man walked in and could hear me crying in the shower.
All it took was a hug for him to put me back together.
I couldn't imagine doing this on my own. All the extra responsibilities (the meds, the schedules, the exercises, the appointments, the equipment) can take a toll on us, but he's my rock.
It's like we share a mind sometimes. People make comments that other people don't pick up on, but we notice it. I can be upset and he knows just what to say to make me feel better.
Thank goodness for my mom too. Man, without her, we would be in big trouble.
A lot of the doctors tell me at the end of appointments to make sure that we make time for ourselves. As a married couple.
Besides two weddings we've attended without the baby, we've been on one date night since she was born. And that was when she was about 6 weeks old.
The only reason I even say that is because it makes me that much more proud of our marriage.
2q37--and all the other syndromes and diagnoses out there--you guys do a good job at ruining marriages. Not us though.
You've brought us closer together. You've shown us just how strong we need to be. You've shown us that life doesn't go the way you plan, and that's absolutely ok. You've taught us how to adapt.
I'm sure that without there being "anything wrong" with Arianna, we would still love her unconditionally, but this adds something special to her.
I can say I love her more because of it. At 8 months old, she has faced a lot of adversity, but she will be stronger because of this. We will be stronger because of this.
So do you see how this has become a love/hate relationship between me and 2q37 Deletion Syndrome?
In the NICU, they threw more than one syndrome at us. It felt as if the Residents had bets going on who was going to diagnose her correctly. It felt like a dream. We kept telling them why we didn't think she had a syndrome. I mean, she's our baby. Those things only happen in movies--this is just a dream isn't it? But there's no coincidences in medicine they say.
They told me not to google. But how could I not.
There are so many syndromes out there.
Finally, a long two weeks later, the Genetics Doctor came to Arianna's bedside. He examined her for himself. Verified information that we already knew (eating problems, webbed toes, hearing loss). It seemed like he talked and talked and talked. Finally, he gave us the name of the syndrome.
2q37 Deletion Syndrome.
What? How am I going to remember that? What does it even mean? Is it common? Will she live a normal life? Is she going to live? Will things be ok? What happened; why us; we were supposed to have a healthy baby....
2q37 Deletion Syndrome. Oh how I HATE you.
You are the reason why my daughter needs a feeding tube. Why it takes so much more work to be able to lift up her head. Why she can't hear us. Why she isn't "babbling". Why her lip droops when she cries. Why we have more appointments than most families. Why I needed to learn all these medical terms and how to work nicely with insurance companies. Why I needed to go from being a manager to a teller. Why our baby girl needs hand splints and a helmet.
You're the reason why I can't sleep at night. Why I have horrible thoughts going through my mind. Why did you have to take away our happily ever after? Why us? What did we do? Didn't my husband and I experience enough pain?
2q37 Deletion Syndrome. Oh how I LOVE you.
You may have "taken" so much from our baby girl, but you left enough for us. You're the reason we smile for the smallest reasons. You're the reason why we learned not to take things for granted. Why we've become so educated on reflexes and reaction. You've increased my tolerance for things I never thought I could handle.
You're the reason we have met some of the most amazing people we know. You're the reason we smile at strangers. You're the reason why I can spend time with my daughter, rather than having some one else be with her all day. You're the reason I can truly find the good in everything.
You've taught us unconditional love. You've taught us patience. You've taught us how strong and brave our baby girl is. You've taught us who we can count on, and who we can't. You've made our baby girl who she is. And we love you for that.
Everyone tells you that having a baby is going to change your life.
But for everyone, it's a little bit different.
We were prepared for our lives to change.
We weren't prepared for them to be flipped upside down and have everything we've ever known tested.
It was an adjustment. I remember sitting in her nursery bawling my eyes out. I couldn't wrap my head around any of this.
It gets easier. It's amazing to see her grow and flourish.
Not everyday is a walk in the park. The smallest set back can unravel me.
Just the other day I didn't think my husband would be home anytime soon. The poor man walked in and could hear me crying in the shower.
All it took was a hug for him to put me back together.
I couldn't imagine doing this on my own. All the extra responsibilities (the meds, the schedules, the exercises, the appointments, the equipment) can take a toll on us, but he's my rock.
It's like we share a mind sometimes. People make comments that other people don't pick up on, but we notice it. I can be upset and he knows just what to say to make me feel better.
Thank goodness for my mom too. Man, without her, we would be in big trouble.
A lot of the doctors tell me at the end of appointments to make sure that we make time for ourselves. As a married couple.
Besides two weddings we've attended without the baby, we've been on one date night since she was born. And that was when she was about 6 weeks old.
The only reason I even say that is because it makes me that much more proud of our marriage.
2q37--and all the other syndromes and diagnoses out there--you guys do a good job at ruining marriages. Not us though.
You've brought us closer together. You've shown us just how strong we need to be. You've shown us that life doesn't go the way you plan, and that's absolutely ok. You've taught us how to adapt.
I'm sure that without there being "anything wrong" with Arianna, we would still love her unconditionally, but this adds something special to her.
I can say I love her more because of it. At 8 months old, she has faced a lot of adversity, but she will be stronger because of this. We will be stronger because of this.
So do you see how this has become a love/hate relationship between me and 2q37 Deletion Syndrome?
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