Year in Review

It’s hard to believe that, in 5 days, Paige will be one year old!  The past few weeks I’ve spent a lot of time reflecting, rejoicing, preparing, and even grieving.  Reflecting on what we’ve been through and how far we’ve come.  Rejoicing that she’s here, happy, and as of right now, healthy.  Preparing for her Baptism and Birthday party (as well as special needs equipment we’ll need for the year to come.)  And finally, grieving the visions and experience I should be having with Paige.  Visions of mothering a daughter that Lissencephaly took away from me.

I had a little bit of a meltdown during one of Paige’s recent Occupational Therapy sessions.  Paige reached for a toy, held it, and put it to her mouth.  This is a pretty big thing and a HUGE milestone for her.  I was elated and gave her a hug and celebrated like I would for any other childhood milestone.  And then I cried.  A lot.  Like, an embarrassing, ugly cry in front of the Therapist.

It wasn’t supposed to be like this.  This is the time where she should be taking her first steps.  She should be playing in my cupboards like Will did.  I should be pulling my hair out chasing two toddlers around the house.  I could name a million more coulda, shoulda, wouldas but you get the picture.  Bottom line, I’m grieving all of the things I can’t do with my daughter that I started picturing the second the Ultrasound Technician told us we were having a girl.  It’s hard and it sucks.

After my mini-celebration-turned-sobfest I picked up my Sweet P and felt something completely different.  A whooole lot of guilt.  Through my puffy eyes I saw that she was HAPPY!  People ask me all of the time how she is doing and I always say that she is absolutely the best baby ever.  She’s constantly smiling, eats like a champ, and sleeps pretty consistently through the night.  All things considered, and especially with this diagnosis, she’s doing amazing.  She’s here with me and I get to hold her.  I felt guilty because I never want her to think I’m sad because of her, because it’s NOT her!  She is wonderful and is such a light in our lives.  Every good thing she does will alway and forever far outweigh the bad and will forever be our Angel on Earth.  Andrew and I have always said that we don’t care weather she runs a marathon or never takes a step but the sad reality is, there is an ache that will never go away.  Again, to be clear, it has nothing to do with Paige and everything to do with Lissencephaly.  There are still days where I ask myself “Why? How?!” and others where I feel like acceptance is on the horizon.  The truth is, these emotions will probably reoccur throughout all stages of life.  Like preschool, Kindergarten, proms, graduation, weddings – you name it!  There will always be something to think about.

Thankfully, I have a close group of family and friends to help us navigate these seasons of life and we will find a new normal over and over again.  I really try to face negativity head on and refuse to have animosity in my heart – I even try not to hate Lissencephaly, believe it or not!  Looking for the good is not always easy but I’ve found that the world doesn’t stop for your grief and much prefer looking for hope and happiness over laying on the couch all day.  I’ve learned that sadness will happen but I have people around me to help pick me up and KEEP GOING!

Paige’s birthday this year might not be what I imagined, but it will be amazing. We are having her Baptism on her birthday this Saturday and it will be followed by a catered party at a local restaurant with family and friends. I still got to fulfill some of my mother/daughter dreams in the process, too! I crocheted her Baptism dress and ordered her a cupcake party dress and got her the girliest, cutest, and a-little-on-the-obnoxious-side headband to match! Like we always have, we will celebrate her here and now and for EXACTLY the person she is! We love her to bits an that will never, ever change!

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  1. You are so very strong and brave and a wonderful mother. Don’t be too hard on yourself that you rob yourself of your right to the whole process of grief and acceptance. Good, bad, or ugly. I haven’t seen you for many years, but I have been following and cheering for you all and crying with you through these posts. I know it sounds empty but really if you ever need to vent or anything please reach out. I don’t pretend to know but I certainly can imagine how difficult it must be. It would be wonderful to see you. I’m Rooting for you,all of you, however small that may seem please know it is sincere and heart felt. All the best – Lisa

  2. Your daughter is precious, and will blossom! My Marilyn Marie was diagnosed with lissencephaly at 18month’s old. She is five and a wonderful, beautiful little princess. We didn’t have and wasn’t given a good outlook when given the diagnosis, was devastated actually. She has been in a special class since she was three, therapy is included even before her diagnosis and until this day. She is starting to get out a few more words, and man can she run jump and play. Don’t let anything hold you back! Best wishes and good luck!

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