What a difference four months can make…

If only I could go back to that hospital room, the Gardenia Suite I believe it was called. Where two brand new parents heard the words Down Syndrome for the first time, at least as it pertained to their child.  To a time so full of despair and disappointment that no one knew what to say. To a day that was supposed to be reserved for excitement and joy. What would I tell THAT me? I would say, “Just wait. One day soon, you will be surrounded with so much love and joy and promise for the future that those words won’t even sting. You won’t wish that anything was different, not one single thing or chromosome.”

That day was Sunday.


We baptized Lila McCarly Milburn at Grace Episcopal Church on April 15th at 10:45 am. At Grace, the baptisms are held in the middle of the regular service. And everyone who wants to be a part of the ceremony gets up and gathers around the baptismal font. This is what they could see.

But the amazing part is what I saw. Every time I looked up from this happy baby I held in my arms, I saw another person in the crowd who loves her. Family, friends, co-workers. You name it, they were all there smiling over Lila, many with tears in their eyes.  She wore a dress made just for her by a great family friend and the bonnet her Daddy wore when he was baptized in this same church. She had three godparents standing behind her who will always love her. She had four grandparents who are literally ready to fight each other for a chance to hold her. She had two parents who think she hung the moon. And we have her.

The day before the baptism, Susan Butler, the Reverend who performed the ceremony, asked us to come to the church and talk about the meaning of the service. She told us about her colicky baby who slept through the night for the first time after he was baptized. Then, she asked us what this milestone meant to us as new parents. And I told her about this overwhelming feeling that had made its way into my life. It started the Sunday before, as we sat in church with Lila for the first time on Easter Sunday.

It was gratefulness. Gratefulness for this little girl who came into our lives and taught us how to love. For a baby who forgave us for crying the first day we met her. For Lila.

So to me, this baptism was a turning point. It was a moment where I can start letting go of my fear for the future and just be thankful for my baby and all she brings to my life, Down Syndrome or not.

And as I looked into the faces of all the people straining to see Holy Water poured over Lila’s head, I knew they were grateful for her, too. I knew they saw in her, what I do, pure joy and strength and awesomeness. Pure Lila.

And after the service was over, we came back to our house and celebrated our girl, with burgers, bluegrass, and flowers and pom poms you hang from the ceiling.

Lila’s cousins sang her a song, with 50 of our closest family and friends gathered ’round.

Their words… “Girl, you’re amazing, just the way you are.”

So, if I could travel back in time and tell my post-childbirth, hormonal, weepy self what the next four months of my life were going to be like, I would tell her that they include some of the lowest lows. But more often than not, you are on the other side. Your heart won’t break. In fact, it will grow. It will be amazing.


Have no envy, no fear…

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When were so desperately trying to get pregnant, the only place I could cry was the shower.  Charlie had already left for work, the house was quiet except for the music I always blasted.  Over and over again, I would listen to a song by Joshua Radin called, “No Envy, No Fear,” while I sat in the floor of the shower and cried like a little girl.

(A little background music, for your reading experience)

The same way I once cried when I fell off my bike and skinned my knee.  Or the first time I remember spending the night away from my Mom.  But now, instead of physical pain or loneliness, I was crying because of the unfairness of life.  I wanted a baby so badly, and all around me it seemed like all anyone else had to do was blink their eyes and tap their shoes together three times, and there was a plus sign on a pregnancy test.  But for me, months and months had gone by and no plus sign, no baby.  I cried because it was the one thing I couldn’t control, no matter how hard I tried.  And I cried because of how guilty it made me feel.  I was full of jealousy in every ounce of my being.  I ENVIED everyone else who had one.  I FEARED the chance that I may never find mine.  I didn’t want to do either, but it was all I could do.

And then one day, a plus sign came.  All the ENVY and FEAR disappeared.  I lived nine months without it.  The absence of them both made me the person I used to be, the real me.  It was the best nine months.  The nursery I had planned in my head for two years was finally a reality.  The name I had whispered to myself for so long was on a wall in pink and black and white.  She was coming.  She had found me.

And soon after I met her, where did I go?  The floor of the shower again with the word Down Syndrome running through my head.  With the music blasting so no one would hear.  Crying so hard I could barely breathe, questioning where my picture of perfection had gone.  Scared to think what the rest of my life would be like without the image I had in my head.  I picked it up again, all that ENVY and FEAR.

In the last four months, I have shed most of it.  Little by little, day by day, I dropped it off and left it behind.  I was getting lighter, not only losing the pounds of pregnancy (thank God for breastfeeding) but the weight of the negativity that had come back to me, dragging me down.  The thoughts that would try to hide what a blessing I had.

But, days like today remind me they are still lurking in the shadows.  My two old friends, ENVY and FEAR.  They can rear their ugly heads at the strangest times.  During the moments that can make me feel the guiltiest.  During someone else’s excitement or shining moment.  Today it was a friend’s pregnancy announcement.  When I should be happy for them, instead I am envious.  Jealous of the easy and smooth road that, in my mind, lies ahead of them and the contrast to my new life.

Maybe it’s because it reminds me of those blissful 9 months.  And the day I thought would be one of the happiest of life, that turned out to be the most conflicted.  The confusion that stole those precious hours from me and fooled me into thinking it was all gone.  The sadness I feel for not taking advantage of every one of my first moments with my little girl.  The weakness that made me question her, and myself and God.

I know that the last thing I should do now is compare.  Because that is truly what brings back these two ugly step-sisters.  Comparing my experience to theirs, my situation to theirs, my baby to theirs.  I don’t want to envy them, and I don’t want to fear the reality of my life.  Sometimes, but not most of the time, I still do.  It’s hard to admit and I wish I didn’t, but I do.

And it makes me feel guilty as a mother who loves her little girl so much.  But, what I have come to realize is that maybe this is all about a flaw in me, and not one in her.  Because every single mother has to overcome their own obstacle.  And whatever the size, to them, it feels like a mountain they can’t pass.

I have a friend that, from the outside, seems to have the perfect life.  Two healthy and typically developing children.  A job she took a leap to find.  A beautiful home and loving husband.  And not too long ago, she posted on Facebook that every night for the past two years, her daughter screamed and cried and threw a tantrum. EVERY SINGLE NIGHT.  I can’t imagine how she must have felt.  Pulling your hair out doesn’t begin to cover it.  A glimpse into her world was a gift to me that day. A reminder that she has her battle (in fact everyone does), and this is mine.

The road that WE must travel is full of physical therapists and delayed timelines and doctor’s appointments.  The ENVY I have now is for babies who hold their head up one day simply because they want to.  They don’t have to work for hours to build up the strength.  The FEAR that lives inside me is for the first time someone will call my child a name.

But then again, Lila started sleeping through the night at seven weeks old.  She loves to eat and to smile

Imageand to dance around the living room.

ImageShe loves her brother Tigger already.  And slowly, I am letting go of MY envy and fear.  Because if I don’t, one day it will become her’s.  And that will NOT be what my daughter gets from me.

Today was a hard day, but not every one is.  Some are much better.  In fact, most are very close to perfection.


“Have No Envy, No Fear”

Some are reaching few are there, wandering from a heros chair, some are scared to fly so high, well this is how we have to try

Have no envy and no fear, have no envy, no fear

Brother brother we all see, your hiding out so painfully, see yourself come out to play, a lovers rain will wash away

You envy and you fear, so have no envy, no fear

When your sister turns to leave, only when she’s most in need, take away the cause of pain, by showing her were all the same.

Have no envy and no fear, have no envy and no fear

And every day we try to find, we search our hearts and our minds, the place we used to call our home, can’t be found when were alone

So have no envy, no fear, have no envy and no fear