minnie loops

Welcome, Jay Thomas!!

imageI’m back to blogging!  It’s been a while and thought I’d introduce our new addition!  Jay Thomas Barbour was born on Tuesday, January 12th at 1:36am just moments before a snowstorm in Pittsburgh.  Our big guy weighed 8 pounds even and measured 21 inches long.  He was my largest baby and quickest labor – only FOUR hours!!  He has the biggest eyes and hands and is as sweet as can be!

Because I’m so far behind, he is currently 10 weeks, almost 14 pounds, and 24 1/2 inches long!  His doctor told me our Jaybird, as we call him, is as big as a four month old!

I still wake up in the morning and find it hard to believe we have three children now!  It’s a busy, a bit like herding cats, but it’s been incredibly fun.  I’ve been meaning to update sooner, but by the time I sit down after dinner I’m just about zonked out for the night and I wanted to give a thorough(ish) update.

Jay is two months old now, and it was around this time we noticed Paige wasn’t meeting certain milestones.  Of course, babies develop at different times, but we knew her vision wasn’t what it should be.  As you can imagine, I’m a little hypersensitive about development after what we’ve been through with Paige.  I’m happy to report that Jay is currently right on track and reminds me a lot of our Will as a baby.

It’s honestly very thrilling with a little bittersweetness mixed in to watch him grow.  The first smile, batting at toys, cooing, putting pressure on legs, and grasping items have been so exciting to watch.  I cry all the time when I see Jay doing these things.  At the same time, I’m reminded of the anxiety and worry I felt when Paige wasn’t doing this and it makes me sad because this was the start of our journey to a diagnosis.  I remember how I felt during that time and I look at her now and I’m so proud.  So. Incredibly. Proud.

I’m not going to lie, adding another baby after one with special needs has been difficult, mentally and emotionally.  I’m working on not analyzing Jay like I did with Paige and I’m constantly reminding myself that I don’t need to advocate for him like I did with her.  My husband hit the nail on the head when he said we didn’t grow our family to worry and fuss over what could happen.. we did it because we want a big family and we have love to go around.  It’s been a wave of emotions and it’s scary to let my guard down, but it is truly necessary in order to be the best parent to my three little monkeys!

I’m told it’s a different experience raising other children after having one with special needs.  I was warned it would be a lot of watching, a lot of analyzing, and a lot of mixed emotions.  So far, those sentiments couldn’t be further from the truth.  It IS a lot of all of those things, but once I allow myself the grace of knowing it’s “normal” (I hate that word) then I allow myself to feel joy and present.  I’m embarrassed to admit that I sort of “quiz” Jay on these things and I have to stop myself. With Will, I didn’t really know to look for these things, with Paige, I had to, and with Jay, I know too much.  I have to stop myself from the knowing too much and find a nice middle ground… and I’m working on that.  

Along with the watching and list checking, I was told that the highs would be so much higher and the sweet would be SO much sweeter.  Again, I find that to also be true.  When this little baby looks me in the eye and smiles, I light up.  When I get a little chuckle, it’s heaven.  Even when I hear him cry, I know he needs something and I’m happy to be right there.  

As for the other munchkins, they’ve adjusted amazingly.  It took a few days, but we’re in a good place.  Will was a little emotional and Paige had a few sleepless nights but they caught onto the new lifestyle pretty quickly.  The night we took Jay home from the hospital Will asked if we could bring him back to “his other house” but once he realized his little bro was here to stay he was fine.

Will is currently in preschool and is growing like a weed.  He is starting t-ball soon and he’s really excited about that.  Daddy has also taught him how to play Mario Kart on the Wii U and he recently finished 11/12 in a fierce race.  Haha!

Paige has recently taken a break from Conductive Ed but will be returning next month.  She is becoming more vocal and her expressive language is improving!   She uses an “eh” sound in different pitches and we’ve figured out what they mean.  She responds to “hi” and gets particularly excited when she hears the theme song to certain television shows.  Her seizures have been pretty controlled with an occasional spell here and there.  Another thing about Paige.. she is getting TALL!  I constantly have to get her wheelchair adjusted and her clothes are getting too short around her middle.  It’s particularly noticeable when she is in a standing position or in the bathtub.



Oh!  And Will, Paige, and Jay have a new cousin!  Benjamin Todd Walters was born in December 22nd!  Exactly 3 weeks before Jay!  They all met A few weeks ago and it was precious!




Little Moments


This weekend was spent winding down from the 24 Hour EEG and celebrating the positive news that the ACTHar (injection steroid) did, indeed, control Paige’s Infantile Spasms.  I have to admit, it felt awesome.  Awesome to not be constantly thinking, worrying, waiting, planning, or scheduling.  It felt like a small HUGE victory and a weight off of our shoulders.  Throughout the past month or so, life has felt like a rapid fire of appointments, diagnoses, treatment plans, and acceptance.  Some days it felt like there wasn’t enough of me to go around.  Some days, I felt like considering how fresh everything still was for our family, overall we were doing pretty well.  I’m starting to believe that happiness truly is a choice! Actually, it’s an easy decision to choose when your only other option is defeat.

I would be lying if I said that I didn’t have dark moments where I think of all of the scariness of the “could be’s”.  There are a lot of them and I do go there sometimes.  It’s not productive and it’s something that I’m striving to overcome, daily…

Then there are those moments.  The little occurrences that happen all too often that probably slipped under the radar before.  Like, when I’m rocking Paige to sleep and I look at her fuzzy little head and pouty little lips and realize she is still just a baby.  An eating, sleeping, pooping, peeing, baby.  All she really needs from me in this moment is for me to love her – just like any other baby.  Moments like how she gets excited when I feed her in the big girl high chair and how she grunts, excitedly, for more in between bites.  In that moment, she is thriving and happy – just as she should be.  It’s when she kicks her feet in the bathtub and giggles at her silly brother when he’s playing with her toes and giving her sudsy kisses.  In that moment, I am a mom savoring precious time with my two, little, and beautiful children – just because I can.

There are many of these moments throughout the day and I make sure I am a lot more mindful of them when they happen, and really, that’s such a beautiful thing.  I’m talking taking it all and and running with it!  Talk about blessings in disguise?!

I’ve also been spending a lot of time really watching my two year old, Will.  I watch him climb on a clothes hamper to play “cooking” in my cupboards, jump and roll around in the snow, hide crayons to color on the wall when he thinks I’m not looking, jump across the room from the ottoman to the couch.  I watch him all of the time and don’t take for granted how easy it is for him to do all of these things.  I’m in awe about how eager he is to explore and how he, is so young and, knows he should try to cover his tracks when he’s doing something naughty.  For obvious reasons, I correct his behaviors when they are wrong, but I always take lots of mental photographs because I know they will be such good memories that I’ll hold with me always, especially when he’s older.  And if I’m really quick, I can get actual photographs too!!

“There’s a crack in everything, that’s how the light gets in.” -Leonard Cohen