Friday, February 26, 2010

Timing is everything

Finding out my newborn daughter had Down syndrome was probably the hardest thing I've ever gone through.  And it's all because of the TIMING.  The diagnosis is usually given before you've even had a chance to bond and get to know your baby . . . either prenatally or moments after your child is born.    The only thing you do know about your baby is that she has Down syndrome.  Not that she's going to love dancing, jumping, coloring, being a sister, smiling, be a fighter, and melt your heart every time she says, "I love you mommy!" 

Just imagine if moments after you gave birth, your doctor put your precious infant baby in your arms and went on to tell you about all of the upcoming challenges for your child.  "Here's your new baby boy.  He's going to be diagnosed with Asthma when he is 2 years old.  He'll never be able to be around dogs because of his severe asthma but he'll beg you for a dog and ask you, almost daily, if he can have one when he dies and goes to heaven.  He will have multiple trips by ambulance to the hospital where you aren't sure if he's going to make it or not.  Oh, there's no reason to cry.  He'll surprise you with all he is able to do even with his Asthma.  Just try to enjoy your new baby."  I use this example because it happens to be one of the challenges my son faces but it could be anything . . . Autism, Diabetes, Seizures, Drug addiction, ADHD, speech delays, learning disability, etc.  Every child has their own obstacles and challenges they each face.  

Luckily the majority of our children's challenges come after we already know them and it does not define who they are, but it's not that way with Down syndrome.   After Morgan was born all I could think about was the Down syndrome.  I knew she was a baby first but my initial focus and worries were on Down syndrome more than the baby.  It was in the NICU when I noticed all of the nurses, doctors and literature referring to Morgan as "the baby with Down syndrome".  It seemed like a mouth full.  Why not just say "Down's baby"?  When Morgan was one day old in the NICU, Gavin said something that included "down's baby" in his sentence.  I told him how the doctors and nurses were saying "baby WITH Down syndrome" and how I thought that seemed like such a long way to say the same thing. He said he liked their way and it didn't matter if it took longer.  It was how we should phrase it too.  From that moment forward we've always tried to use "People-first language  (emphasising they are people first, not a disability).  I try to explain it like this to my friends -- We don't say Ryan is Asthma;  Ryder is Diabetes. So why would I say Morgan is Down syndrome or a Down's child?

This past week we found out our baby-- not such a baby anymore-- Mia, like her older brother, has Asthma.  She was struggling and laboring to breathe on Monday.  I took her to the pediatrician's office and she responded to Albuterol treatments.  She has been on oral steroids and inhalers this past week and is still wheezing but not laboring like she was those first few days.  It breaks your heart to find out your child is going to have challenges with something as crucial as breathing.  But it doesn't change who Mia is or my love for her.  She's still the same adorable baby girl that she was the day before she was diagnosed, now she just has asthma.  Just like Morgan is still my feisty, loving daughter who happens to have Down syndrome.

   
The goods--pulse oximeter, inhaler and steroids


She fights like crazy when it is time for her inhaler.  But it's all fun and games when she's the one in control.








My favorite picture of Morgan and Mia together

24 comments:

Katy said...

I loved reading this and you articulated it perfectly. If Down syndrome were something diagnosed several months/years down the line, acceptance of it would be much different.

Instead, it's something that hits you over the head the moment you meet them. Many people (including my husband and I) describe as feeling like the child you thought you would have died. That's where a lot of mourning and grieving over the diagnosis comes from.

We look back on those days and those many early tears and just laugh now. If we could have only been given a picture of Grant now or glimpse into one day with him would really be like (full of happiness and laughter), we would have quickly dried our tears and realized what joy and immense love - despite the challenges - was awaiting us.

heather said...

Katy--I definitely mourned the child I thought I was going to have. And honestly, I think those first few days were harder than if my baby had died. I was scared to ever admit that until I started hearing other moms saying the same thing. I was trying to describe it one time to someone and said, "I mourned the girl who I thought I was getting." And she said, "Oh so Morgan is a boy." :) Not quite understanding. It would be so nice if we didn't have to know right after they are born and had time to fall in love with them and not worry about a diagnosis and fears of the unknown. In my subsequent pregnancies I used to smile during the ultrasound just thinking about that baby dancing around on the screen having Down syndrome like Morgan. It didn't scare me anymore. It wasn't an unknown journey anymore.

Tracy said...

You are so right about that.......I knew Rachel had Down syndrome before she was born and it was all I could focus on. You are so right in stating that no child comes into this world without some challenges. Some just have challenges that are a little more noticeable than others.

Vennesa said...

You put it so well Heather! And they are such cuties. Love those pictures.

My name is Sarah said...

I love that picture of Morgan and Mia:) Two beautiful sisters!!

Rebecca said...

That was such a touching post. My one daughter had ADD and luckily I knew her first not her ADD. YOu are a wonderful writer! Love the picture of your girls, it is breathtaking!!

Monica Crumley said...

Such beautiful girls! I'm so happy Mia doesn't seem to mind the treatments. I agree with you on the timing. We had no chance to bond with JM, baby turns purple and is whisked away and then the news that changes your life forever. Thank you for your beautiful post.

Tammy said...

Beautifully written.

And those kids of yours.......beautiful too.

Tammy and Parker
www.prayingforparker.com
@ParkerMama on Twitter

Lisa said...

Such gorgeous girls.

I think you make such a good point about timing. I was lucky . . . I didn't know right away that Finn had Ds. He was born at home and I got to bond with him for a full day before we realized anything might be amiss. So I did get to know him and fall in love with him as a baby first. Then there was the frantic trip to the ER and the surgery the day after he was born, and the two-week stay in the NICU, and it was in the midst of all that that we found out he has Ds. I often wonder to this day if finding out he had Ds would have been less devastating had it not been compounded by the surgery and hospital stay - THAT was so traumatic for all of us.

It's funny, too, Michael and I were just talking last night about people-first language. And he was saying that when people say "Down's baby" they don't mean any harm by it, it's just an easier way to say it. Which is true, and maybe it all just boils down to semantics, but the way I see it is when someone says "Down's child" it takes away their humanity.

Kristinn&Thelma said...

I understand what you ara talking about!! I dont like when our physiotherapist is always talkinga bout healthy children and then my son....like he is not healthy?? I look at him as a healthy boy who happends to have down syndrome.

heather said...

Lisa--I'm with Michael on the "people-first language". I definitely appreciate it when people refer to Morgan and her Down syndrome that way but I try to not get offended when they don't use PFL. I've never been that great at being PC myself and it's hard to keep up with what's ok and not ok to say. And before I had Morgan, I didn't know the difference either so it's hard to expect others to know. Hopefully they will catch on as they hear it more and more from my family.

Sharon said...

Mia is adorable. I love the photo of Morgan and Mia together.

kecia said...

OH I LOVE this post!! It is my thoughts exaclty!! I rememebr someone asked Kris (my husband) when Bree was born, about how he was feeling about it all and how he was going to handle it and he said "every child is going to have challenges,...we just know what some of hers are going to be" Anyway thanks agian for a great post and articulating my feelings too! I LOVE that picture of Morgan and Mia!!

Jill Carilli said...

Hi Heather! I saw your comment on my blog and wanted to check out yours. I love this post!!! What an amazing way to explain the aftermath of delivering Morgan. I think the analogy was very creative and I LOVE the Person first language... thanks for sharing.

Jethro said...

My wife and I both felt strongly hat something was wrong before our daughter was born but didn't know what it was. So our experience was different. We were relieved to finaly have a diagnosis of something. That is a unique situation, I know, and we feel fortunate that we had premonitions. With our next two kids, we even hoped that they would have Down syndrome because it has made us better people in so many ways.

Kelle said...

Your family is gorgeous. Just beautiful...touching blog! Now I have to read more!

Greg said...

We found out Megan would have Down syndrome when Corinne was about half way through her pregnancy. Without going into detail, lets just say we were devastated when we found out.

Though still very difficult to deal with at that time, in some ways I think that might have been a little easier in some ways since we had time to think things through and prepare to some extent before she was born.

I guess each circumstance has its own set of challenges and blessings...

Karol said...

so well said, Heather. You really have a way with words. Enjoying your blog all the time!

Cami said...

A Comment! Great post Heather. I learn so much about life when i read your blog. I love your family! Hope Mia gets feeling better with her treatment! Love the pic of Morgan and Mia.

Tausha said...

Great post. I think we all feel so much the same. It was another loss for me as I left a bad marriage 3 months pregnant and placed my little girl up for adoption 5 years prior to having Sam. At his birth I felt the loss for the boy I didn't have and also the loss once again of the girl I lost. I thought I would never see sunshine or feel peace again but it came, slowly but surely and now I cry when I look at Sam because of how much I love him, it just overwhelms me.
On another subject, how did you get your header picture (family picture at the top of your blog) to be bigger?

Summer said...

Heather-
You said it all so perfectly. It really does come down to timing. It was so hard to bond with Jayne when she was first born because she was in the NICU. When we were with her and could hold her, everything was ok. She was just our new little baby. When I was up in my hospital room without her, we were worried and scared for the future and really did mourn for the baby we thought we were going to have. Now, I really can't imagine life being different. I love your blog! So glad we got a chance to visit last week!

iColossus / The Monster said...

Hi there Heather,

Yes, your family is definitely one of the ones I was thinking about, i.e. having a child with DS...and not letting that stop you from going for more! I love that "hope triumphing over experience." So brave and bold. The human spirit is so inspiring.

Your children are beautiful and I love the pic of your header, so sweet. Glad that Morgan is doing better and that Mia's health is being taken care of as well.

BTW, although I'm not Mormon (Buddhist and hubby is Jewish,) I dated a couple of sweet Mormon guys (although not at the same time!) and that was a nice experience of your community. :)

Take care and I'll be back for a visit to your blog!

The Gardener said...

Great post Heather. You explained things so well. It helps me understand.
Thanks for your help the other day. I appreciate you taking the time to answer my question.

JT, Carly, Boston, Jocelyn and Snuggles said...

I found your blog in a very round about way.. so sorry for stalking, but I just had to say I love this post. My son has Asperger's and at times I have felt robbed because they couldn't tell me anything was wrong when he was born. I've felt like we were robbed for a few years thinking he was going to be the quarterback and girls were going to be calling him all the time as a teen. I could have all those dreams for him because their were no boundaries put on him, but with the Asperger's diagnosis I suddenly felt robbed. I was angry for not knowing, but on the other hand I look back fondly on those days where the sky was the limit. Anyway, a great post, and I can really see your point.