Some 1 Year Thoughts

The past few days I haven't had much time to think about this "anniversary" for us.  It's Lillian's birthday, but it's also our Birth Day, and a year from the day our lives changed forever.  Yeah yeah, of course anyone that has a baby has a life changing experience, but what I'm talking about is the way PWS has changed our lives forever. 

When Lillian was born she was very lethargic.  She had a weak little cry, and sounded more like a newborn kitten "meowing" than a baby crying out for the first time.  We heard it once when she was born, and then for the second time 3 or 4 days later.  When she was born she was taken immediately to the special care nursery to be observed over time to see if she just needed to "wake up" from the traumatic birth experience (aka forceps delivery).  After 2 days of being in the special care nursery, her pediatrician came to our room and explained to us there was nothing more they could do for her.  She would have to be flown by helicopter to the children's hospital about an hour away.  That was the worst day of my life. It was officially the day we knew something was very wrong.  That was the day we lost our baby.

I have a hard time writing this, because I know there are people out there who have lost their child physically.  They lost a child that they can never hold again, never see again, never touch again.  But there's no other way to describe what we went through other than saying we lost our child.  We lost the child we dreamed about.  The child we talked to for 41 weeks inside my belly.  We lost the dreams we had for her.  I grieve the child I thought I gave birth to.  The little girl we were expecting for 9 months.  We wondered what she would look like, what her favorite subject in school would be, what college she would go to, who she would go to prom and homecoming with.  What her children would look like.  What colors would be in her wedding, and if she would let me help her plan it or elope to some exotic island with the love of her life.  We lost that baby.

Having Lillian in our lives has blessed us more than we could ever imagine.  I remember wondering if we would ever be happy again.  If Lillian would be alive for her first birthday.  I wondered if she would ever hit her milestones or know who we were.  We didn't have a diagnosis.  Nobody could tell us what to expect. 

The day they took her from the hospital I birthed her in and separated us was the worst day of my life.  After they took her from us we were numb. We must have looked like zombies when Phil wheeled me out of the nursery and back into my postpartum room.  Once we got there we just closed the door and sobbed.  We both just broke down and sobbed on my hospital bed.  I don't know how long it lasted, but we had to wait hours before I could be dismissed from the hospital to be with Lillian in the NICU at the children's hospital.  I remember numbly walking into our empty house to collect some extra clothes for our stay, not knowing how long we should pack for.  Feeling like I was in the twilight zone after carrying a baby past full term in my body, and then suddenly being completely alone in our house. No baby in my belly, no baby in the carseat, no baby in the house.  Just empty. 

Tomorrow, one year from that date, we're having a party.  We're celebrating life.  And were celebrating BIG.  Because this life we were given, this new life, a new baby, a baby we didn't plan on having... She makes us happy. And it's a damn good life.

She might not look 100% like us, she might not meet every milestone on time or make honor roll in high school.  She might not have a wedding or elope with the love of her life one day, but she will have a good life.  We will all have a good life.

Psalm 139:13-16
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  1. Happy Birthday Lillian!!! Hope you have a wonderful birthday!!!!

  2. I truly love this post, for SO many reasons. Mostly, I can really relate to that feeling of loss (both physically losing a baby, and of the idea of a 'healthy' baby.) I can relate to not being sure we'd make it to one year, and I can relate to not being sure if I want to grieve or celebrate. But you're right.. we'll celebrate, because our children are going to have great lives.

  3. Your post brought tears to my eyes. You are such an amazing mommy! Happy Birthday Lillian!!

  4. This post has me crying. I think Lillian and all of you already have a great life even though it doesn't look like what you thought it would. Lillian is one amazing girl and I'm sure she'll continue to surprise you.

  5. Happy Birthday Lillian! You are going to have an amazing life because you have amazing parents!

    PS- You so look 100% like your Mom & Dad, so don't listen to your Mom on that one :)

  6. Beautiful post. This post made me cry. You are an amazing woman and mom and you are giving her the best life possible. Like Melissa said, she will continue to surprise you because of all of the love and dedication you have given her.

  7. I am a special education teacher and just happened across your blog. I work with children with cognitive disabilities, and actually have quite a bit of experience with PWS. I currently have a kindergarten student who carries a P-W diagnosis, and have worked with individuals from 5 yo through 27 yo with PWS. I can attest that kids with PWS may live a different life than other children with different challenges, but it is a life filled with so much happiness as well. My student with PWS currently is the complete light of my classroom, and is known by EVERYONE in school (staff, students, parents, etc.) because he's so incredibly friendly, sweet, and sociable. While academics aren't his strong suit, he makes up for that with his ability to make peope smile, include every child as a friend, the absolute cutest little face, and an incredibly sincere interest in being with those around him. I hope you've read the poem "Welcome to Holland" because it beautifully describes the grieving needed through diagnosis of a disability, and then the moving on into realization that a child with a disability still has so many lovely things to offer. (The poem can be read here: http://www.our-kids.org/Archives/Holland.html) Congratulations on your beautiful baby, and congratulations on being a clearly awesome advocate for all her special needs. I always say there is no mistake that my students are born to the parents they are... Niel (janieljohnston@comcast.net)

  8. Sarah, wonderfully worded. It's hard to capture for people why that Day is not always easy to be 100% happy about and just celebrate, because it was a HARD day. But there is a lot to be celebrating now. I know you feel the same way, but we feel like we hit the lottery with Dean.

    Niel, thanks for sharing your experience with kids with PWS! Praying our sweet Dean has a teacher like you here and there along the road. :)

  9. I love this post...thanks for your honesty! When O was born we were advised to get grief counseling but I couldn't figure out what we were grieving...Yes, I was devastated and scared, but I just didn't think I could call it grief since he was alive.

    Happy Birthday to Lillian..and keep enjoying her. Oscar is definitely a well-loved kid and I don't think as much about all those lost dreams. He's making up his own, and they are just as good if not better than mine.



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