Saturday, May 3, 2014

through her eyes

{The moccasins Lily is wearing in this post were specially designed and named after her by HelloMoccs. You can purchase The Lily Mocc at


Sometimes life presents us instances where we can view our past self through the filter of our present circumstances, and when we realize the person we've become... the change is so drastic, we are almost unrecognizable.

Have you ever been there ?

Have you ever relived a moment - had a deja vu experience - only to realize that this time you got it right ? Where once you might have viewed a situation as unfortunate or unredeemable, this time you saw through the eyes of experience ?

I had a moment like that this week... a deja vu, been-there-done-that moment... only this time I saw the truth for what it was.

Ten years ago, I was part of an email group for large families. Members of this group exchanged emails filled with suggestions on everything from camping with lots of small children, to shopping and sticking to a budget when feeding a crowd, to ideas and opinions on birth control.  I enjoyed the email discussions and gleaned many ideas over the course of several years of reading. I felt like I got to know some of these families pretty well - this was in the days before blogging and Instagram existed, so most of the emails were heavy on words and light on photos. 

There was one photo however, included in the batch of emails grouped together one particular week, that is forever etched in my mind.

A family in the group had just welcomed another baby into the world... he was their eighth child. I was pregnant with Noah (my eighth) at the time, so I felt a sort of kinship with this family. They had several children who shared our children's names, and the ages of all our little ones coincided as well.

During this time, a marker for Down syndrome had shown up on Noah's ultrasound; I waited eight long weeks for a follow up ultrasound to see if it remained. I had opted out of an amnio, and those seemingly eternal weeks of waiting brought me to a place of prayer and surrender that I had never gone through during previous pregnancies. When our follow up scan revealed a clean bill of health (no markers as far as the doctor could see) I admittedly breathed a huge sigh of relief. I remember hanging up the phone and feeling as if a hundred pounds had been lifted off my shoulders. I called Sam crying, and told him our baby looked "perfectly normal."

So a few weeks later, when I opened the email that contained a photo of a brand new baby in our group of large families ... my heart sank. Although nothing was said in their birth announcement, it was obvious from the baby's tiny features that he had Down syndrome. His tiny closed eyes were tilted upwards at the corners, his little rosebud were lips pulled down slightly at the edges, and his sweet little button nose was very clearly lacking any prominent bridge at the top. He lay softly in his mommy's arms, and while he slept, all of his siblings leaned in, gazing down adoringly at his angelic face. The smile on his parents' faces looked genuine, and the words printed beneath the photo spoke of pride and joy at the birth of their son.

But in my mind, I thought they had to be hurting.

Of course they loved their son, and I had no doubt that they would spend the rest of their lives caring for him with willing and thankful hearts - they seemed to be such a kind family, I had no reason to think otherwise.

But after receiving the news that my own baby was "perfectly normal", I couldn't help but feel sad that this family had somehow been dealt a blow. It appeared that the diagnosis of Down syndrome had come as a surprise - either that, or they had never thought it an important enough detail to include in any of their previous emails. Either way, I felt such a heaviness and even a little bit of guilt for several days, knowing that very well could have been me.

Because underneath my sadness and angst for this family, was perhaps secret relief - I knew I would love and treasure a baby with Down syndrome, but in all honesty I prayed that this would never happen to me.

I truly did have genuine pity for this family, and I wondered at their reaction to the birth of their son. I knew they loved him - but in my naivety I believed they loved him in spite of his Down syndrome. He was their own - he shared the same white blond hair that his siblings all had, and it was clear that he resembled a few of his older brothers, despite the features that pointed to an added chromosome. But in my mind, this family was somewhat heroic- they were choosing to look past his differences and were somehow sacrificially loving their baby in spite of his diagnosis.

How wrong I was.

Fast forward to this morning, when I read a comment on one of my photos of Lily on Instagram.

I had captioned my photo "Did you know princess can have Down syndrome too ? #truestory."

Among the many sweet comments on Lily's photo was this one :
"I cannot WAIT to meet my princess !!!! 3 weeks or less"

And this is where I had a do-over moment.

Because instead of feeling a moment of sadness for this first time mama... instead of wondering how she bravely put on a good face in spite of everything ... instead of thinking what a sweet and heroic thing that was for a parent expecting a baby with Down syndrome to say ...

... I felt her joy.

I knew beyond a shadow of a doubt that this mommy was beyond excited to welcome her little girl into the world - designer genes and all.

And even though she hasn't yet experienced what we have - joy unspeakable and full of glory - she has a taste of it. She loves her daughter fiercely , and it isn't an "in-spite-of" kind of love. She loves her baby with the same love that every mama feels- an unconditional, easy-as-breathing, proud and happy and over-the-moon love - and she can't wait to meet her.

I know this because of the eyes I've been given ... the beautiful, star-studded, almond-shaped eyes of my tenth baby. I see clearly now, because I view life through the perfect filter of truth.

I don't love Lily in-spite-of. I don't love Lily because it's the right thing to do. I don't have to conjure up emotions for my daughter, forcing down a feeling of regret or shame or what-might-have-been.

My love for Lily is genuine and deep and rich, and no different than my love for any of my ten other children.

It's so easy to love this girl.

If you know her, you know what I mean...

Today I'm thanking God for the gift of Lily.

I'm thanking Him for opening my eyes to see the truth of what that family knew so many years ago ... their baby was not a burden or a tragedy to be endured. He was a miracle and a blessing and a gift sent straight from Heaven. He arrived in a package that looked different than his siblings, but he was no less a miracle or cause for celebration than those other babies before him.

I know the love his family felt for him was real - because I'm experiencing it every day.


Anonymous said...

Until having Jake, I'd always wondered if I love Abby differently than other parents love their kids... It really is a fierce, unexplainable mama bear kind of love. The "I will fight for you from the second you were born until the day I die" kind of love. I've learned it IS different from how I love my new lil boy who has 46 chromosomes. Not more or less love, but different. Perhaps just more intense.

And I went to that picture on IG so I could go welcome that new mama to the best club on the planet but I couldn't find it... so if she's reading this, i want her to know that I am just exploding with joy for her! I wish everyone could have a kid with Down syndrome.

Kelly Marin said...

Lily is the easiest to love I think all in my household would agree!! You feel like you hit the jackpot if your the one chosen to be able hold her!!! Of course we love all of you too;)

Kathy McElhaney said...

I love these kind of posts! I'm the youngest of four, my brother who was 13 months older than me was born with hemophilia. So while our circumstances were not identical to yours, we didn't have a "normal" family either. But I have learned that what is normal for the spider is chaos for the fly ;)

"Special" kids bring special blessings to their families. They also teach the other children to love in a different way. We met children with other challenges - blindness, deafness, cerebral palsy - in our journey with my brother and I was always fascinated with how amazing each of them were. I think my Mom would have loved blogging if it had been available 50 years ago!

Hugs to your girl, she's an adorable flower child!

crystalkupper said...

Oh dear Lord, is that girl SO stinkin' cute! A true Oregon girl right there. And your words are beautiful.

Emma said...

I love how your last two posts are about joy - just after I've heard that topic at a conference!

cara said...

I am sure I have told you this before, but I thought Mary had Down Syndrome when she was born. She truly seemed to have the characteristics. I researched it and talked to the dr., etc. The Dr. kept saying she didn't. But I thought she did. She doesn't have it for sure. But I was really happy when I was for sure she didn't have it. And I was always relieved when my tests would come back negative for a baby I was carrying. It breaks my heart now!!! I am glad I didn't know Benji had it before we had him. I would have known that he would be a gift, but I probably would have been devastated on the inside by the news. Being able to hold my little gift and have so much love for him without having the label was such a blessing for me because I didn't want to change a thing about him when we suspected it. Now, it just breaks my heart to see what I would be missing without this amazing child with DS in our lives. He is such a blessing!!!! I love him to pieces!! He is perfect in every way with that extra chromosome. :) :) Thanks for posting Patti! You are always so transparent.

These pictures of Lily are just gorgeous!!!! I just know she and Benji would have a ball playing. xoxo

Meriah said...

I really loved this post - I read it on Feedly last night and have been trying to remind myself ALL DAY to come back and comment on how much I loved it. (yay! I did it! I remembered!!)

But seriously, fantastic post Patti and those photos are fabulous. xoxo

Unknown said...

Absolutely beautiful post, Patti! I just have my Owen and I truly love him just as he is. I have never looked at him and seen Down syndrome. I just see Owen....the goofy, funny, sweet, stubborn, fast as lightning little boy that he is.

Tommie said...

This is so beautiful, so very truthful. My younger daughter has a rare chromosomal syndrome call 5p-. She is absolutely perfect in my eyes and my husband's eyes. Her older sister sees her as just another annoying little sister. I would never, ever want anyone to feel sorry for me. I feel lucky to be Olivia's mom, to get to watch her conquer the world one day at a time.

Naomi said...

oh my word these pictures are to DIE for!!!

shayneswife said...

This really hits home Patti. My first child didn't survive. I lost him at 13 weeks. (I just know he was a boy. His name was Theron.). The doctor actually told me that the miscarriage was a mystery but, "the baby probably had a chromosomal abnormality, like Down syndrome." He wanted to ease my pain. He wanted to justify my loss. Make me feel better because the baby may have been less than perfect. Well, as we know, three typical kids later, I was expecting again.... Number four. And boy, did she rock my world. My Stefi is perfect, she is life. She is smart, feisty, bossy and just absolutely precious. I mourn my loss more. I think about my son daily. I wish people knew the truth. All I know is that that OB office received 10 copies of Down syndrome Pregnancy and they actually gave them to patients. My friend , Melissa (mom of Kian) got one and my midwife called me to talk to an expecting mom and let her know the real truth. Us moms, yah, people think we are delusional, but I know we are spot on. This is some sort of eye opening blessing bestowed by none other than my God! I can't wait to see what our kiddos do! Thanks for this post. I needed it.

Grammi Faith said...

When I see the love Lily's siblings shower upon her my heart hurts. My heart bursts with pride and love for them. They show the same love for Hayden, each little one is showered with love and attention. They have always shown that special sibling love for each baby and as they grow older their love for each other manifests itself is so many mature ways. But the kissing, hugging, tickling, holding, snuggling that goes into the little ones is absolutely heart warming.