Birthday

Paige Patrol Thanks! And other things!

by Andrew Barbour

We have a few updates to discuss since the last time we posted on here, but first and foremost, Stephanie and I wanted to thank everyone, from the bottom of our hearts, who helped us out with our Paige Patrol fundraiser. I am truly humbled, and honestly shocked, at the number of t-shirt purchases and donations that we received. Your outpouring of support means the world to Stephanie and I. There aren’t any words I can use to express our gratitude to everyone, but please know how much your generosity means to my family.

It’s funny, because to be honest, I was kind of a stick in the mud about the whole thing. I remember very clearly saying to Steph “there’s no way in hell 100 people are going to buy these stupid t-shirts” (the way this thing works is, you have to achieve a minimum number of purchases before you receive your donations). Well, turns out I was 100% wrong, as the goal was exceeded within 24 hours of Steph starting the whole thing up. I am still awe-stricken by the amount of support we’ve received throughout our journey, and specifically with regards to this fundraiser.

As I’m sure you can imagine, having a special needs child is not cheap. I have a good job, pretty good health insurance and all the support you could ask for from family and friends, but there are certain things that wouldn’t have been possible without the support from you folks. Steph has done a lot of research on “alternative” therapies and special needs programs, pre-schools, camps, etc., and they are all incredibly expensive. Steph found one school in particular that’s very close to our house, and actually ended up meeting with some people who had sent their special needs children there. We heard nothing but rave reviews, and stories about children that went through this school and ended up able to do things their doctors never thought possible. I’m not going to give you a specific dollar figure, but let’s just say that it wouldn’t have been possible to send her to this school without the proceeds from the Paige Patrol fundraiser.

Because of the generous donations from you Paige Patrol folks, we were able to enroll her in this special needs “camp” at the school right by our house. After a lot of research and asking around, we decided this program would be a good addition to her normal regiment of weekly therapies. I’ll leave the specifics of what exactly they do to Steph when she has time to post about it, but it essentially revolves around muscle memory since Paige’s brain can’t tell her how to do things we wouldn’t normally even think about, like sitting up or rolling over. Despite her limitations, Steph and I swore from day 1 we would do everything in our power to get her little brain and body functioning at their maximum capacity. And we think the work they do with her at this school is going to help her to continue to thrive and excel beyond everyone’s wildest imagination.

On Sunday, June 7th, Paige celebrated her 2nd birthday. This wouldn’t be anything more than balloons and birthday cake for a “normal” 2 year old, but for Paige, every birthday is a milestone. Being that a lot of liss kids don’t even make it to 2 years old, we are honestly lucky that she is doing as well as she is, and thriving at that. We had a party with our family and friends on our deck that weekend, and it was a perfect day to celebrate her. As a result of everything we’ve been through as a family, we don’t take anything for granted, and have learned to appreciate every chance we have to make a memory with her. Her party that day was certainly something we will always cherish in our hearts.

Our summer is going to be crazy, in a good/busy kind of way. We have something on the calendar almost every day of the month through July, from Will’s soccer to Paige’s special needs camp and everything in between. It’s good, because I think as a family, we’re starting to develop a sense of “normal” after so many unknowns over the last year. Steph and I are realistic about what the future holds for Paige and our family, but that doesn’t stop us from appreciating all of the good things we’re experiencing now.

And thanks, one final time, to those of you who contributed to the Paige Patrol fundraiser. We will always be thankful for your generosity and all the good it is doing for Paige.

Pictures from the park, our home, a Pittsburgh Pirate game, Paige’s 2nd Birthday, and Conductive Ed!

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We Have a One Year Old!

 

How fast does a year go?! I’m way late on this post but better late than never!

June 7th was a pretty big day for Little Miss Paige Marie! Not only did it mark her first year birthday but it was also the day of her Baptism! Family members and friends from all over came to celebrate with us and it was such a memorable and special day. It was a CELEBRATION in every sense of the word and it’s a day that we’ll always remember and hold onto.

If you’re a regular reader, in Another Post from Daddy   and Year in Review, you got a sense of our own reflection, experience, and feelings of the last year from Andrew and my perspective.  These posts are from before her birthday and aren’t exactly rosy and they honestly portray how we were feeling at that current time.  Our reflections showed our grief, bittersweet thoughts, and heavy hearts.  It also showed our appreciation and the abundant love we have for our family. It’s clear that although we both process Paige’s diagnosis differently, one BIG thing is certain – together, as a family, we will always focus on hope, love, and progress and we will always CELEBRATE our children and lives together.

Luckily, the only feeling we felt on this day was complete joy!  The day started with her Baptism at noon.  I arranged with my church to have a guest priest to preform the ceremony.  Father Paul has been in contact with me since we found out about Paige’s diagnosis and has been a great support system for me.  I was honored that he agreed to do the Baptism and made the whole event that much more special and personal.  I am an avid crocheter and I made Paige’s dress and I couldn’t be happier with this first-generation heirloom!

After the Baptism, family and friends convened our favorite local restaurant for a barbecue.  I didn’t mention this, but Paige wasn’t feeling so hot and was up all the previous night with a fever.  Right after lunch and an outfit change, she got sick in her high chair right before cake.  After a short barroom bath in the sink and a shot of Tylenol,she was good to go with the rest of her party.  Will had the time of his life because all of his closest buddies and playmates were there and they happily played with their gift bags.

It’s always nice to get all of our family together and we’re so excited everyone took time to come and celebrate with us.  Those who couldn’t make it also made her birthday special with cards, Facebook messages, calls, and texts.  Andrew and I can’t thank everyone enough.  We know that Paige means so much to so many people and from the bottom of our hearts, we thank you for keeping Paige and our family in your thoughts and prayers this past year.  We look forward to giving you more updates and we toast to this year being a good one with, you guessed it, progress and celebration!

 

 

Pictures are very random!  I’ll edit these later!

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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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