Month: June 2014

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!

IMG_0881 IMG_0882 DSC_0093 DSC_0048 DSC_0056 DSC_0067 DSC_0074 IMG_0904 IMG_0905

IMG_0907 IMG_0914 IMG_0472

 

 

 

 

 

 

 

Advertisements

Potty Training – Number 2

IMG_1003 IMG_1005 IMG_1004 IMG_1006 IMG_0999

 

I mean, PART 2!  We’re still working on “Number 2”…

My last post chronicled the start of our Potty Training adventure and every day it’s getting better!  In fact, not even a minute after I hit Publish Will informed me he NEEDS TO GO POTTY and that’s exactly what he did!  Progress.. Ahhhhh!

When we’re at home, he’s not in a diaper.  There have been some accidents here and there and tears were shed when the Mickey Mouse undies were peed on but overall we’re chugging along.  It’s pretty amazing to see Will’s development and growth in only a couple of days.  I think, as parents, we often underestimate our children’s abilities for many reasons.  A big on for us is accepting the fact that our little boy is growing up!  I mean, he’s not even three years old yet but it really feels like he was just born sometimes.  I also think I am a little overreactive and celebrate the littlest things about milestones because Paige has taught me to do that.  This Blog has mostly followed her adventures with Lissencephaly but also has documented the lessons and the shift of our thoughts on LIFE as a result of the diagnosis.

Did I ever think I would blog about Potty Training?  Heck, no!  But it’s a nice break from hospital stays and setbacks.  It may be a skill everybody learns and it may not be a big deal, but it also represents growth, development, and another thing we can CELEBRATE!  We’ve certainly learned to do that a lot more around here!

Birthday/Baptism post is almost finished.. coming soon!

Potty Training. Here We Go!

IMG_0988

 

The time has come.  I’ve been dreading it and putting it off for a few months but it’s time.  Time to potty train, that is.  The reason I’ve kind of been “conveniently forgetting” to start is because I know it’s going to suck.  It’s going to be messy.  And it’s going to be frustrating.  With everything that’s gone on with Paige the last year I really just didn’t want to be stressed if I didn’t have to be.  Since things have been pretty routine (knock on wood) and it’s summer, I think it’s time to give it a go.  Also, Will seems to be ready!  Well, ready-ish.

I’ve been reading about the “3 Day Method” and “Naked Potty Training” and it basically entails letting Will run around all day naked or in underpants and placing them on the potty every 20-30 minutes.  The goal is to camp out in the house for a few days to learn their cues and when they have to go.  For instance, some kids hide to go to the bathroom, some squirm or cross their legs, others will cry, etc.  Eventually, they will realize that they will get wet (or squishy) when they soil themselves, it will be uncomfortable, and when a diaper isn’t an option, the potty really is the way to go!  If your child responds to a reward system, you can throw that in there too.  Sounds easy right?

Hah!  Nothing is ever reeeallly that simple.  At least not for my toddler.

Will is a great kid!  He’s active, he’s smart, he’s aware of his surroundings, and he’s the funniest and most caring child.  He also really likes his diaper.  He’d probably go to Kindergarten in a diaper if I let him.  Okay, not really, but let’s just say he knows that he doesn’t have to stop dancing to The Wiggles to go to the bathroom if he has one on his bum.  So what’s my plan?

I… ummm.. don’t really have one.  I guess I’m sort of doing the Naked Method because he’s currently naked as a jaybird but I’m not camping out all day for 3 days.  I think I’ve said this before, but I get the WORST cabin fever and it’s summer!  However, I keep reminding myself that Will is turning 3 at the end of the summer and we must start somewhere.

Here’s my recap of the past day and a half:

Yesterday, after wakeup, I slipped a fresh pair of Mickey Mouse underwear on Will.  He loved them!  Like, strutted around wanting to FaceTime all of our family members loved them.  He was super pumped about them until.. uh oh – HE PEED!  Ev-er-y-where!  It’s okay, though!  It’s actually a good thing and to be expected.  His bum felt wet and gross and it triggered (I’m hoping) something in his noggin that says I don’t like this and it will kickstart the Potty is Good feeling.  After cleaning up, we tried to sit on the potty every 20-30 minutes, as recommended.  Nothing.  I gave him some water and after a few swigs Will actually told me he had to go!  YES!  MY KID’S A GENIUS!  However, after about 10 minutes of sitting, nothing again.  Shoot.  Oh well.  

Will is naked at this point and I’m keeping him close by.  I suppose this is part of the Learning the Cues portion of our training.  Remember that water I gave him? The cup is empty now and I knew he had to go and he did.  This time, it was a tiny squirt on the floor.  Will prefers the “big boy potty” but I keep the “kiddie potty” in the living room for such instances.  I place Will on the “kiddie” and he’s upset because he peed on the floor.  Again, good sign of readiness!  Much to my dismay, no pee, again.

Break time.  I decide I’m already tired of potty training so I call my cousin.  We talked for about 10 minutes and Will tells me he has to go.  I (half pay attention) and just plop him on the “big boy” and keep talking.  Then it happened.  That twinkle sound!  AHHHHHHHH! Praise the Lord, he did it!  As you can imagine, jumping and cheering ensued and I gave Will “The Chocoholic” a mini Twix bar.  Will was so proud and it was the cutest thing.  Me, being the “smother” I am, hovered over the poor kid the first half of the morning.  When I backed off, it happened!  Isn’t that always the way?

The rest of the day was spent running errands so I thought it would be wise to end training day #1 on a good note and wait until tomorrow to try again.

And here is is..  My recap of this morning:

From everything I’ve ready, day 2 is supposed to be the hardest.  The excitement wears off and the kids (and parents) just don’t find the whole hullabaloo as intriguing.  It makes sense!  Kids have the attention span of.. well kids, so I expected this.  So far, day 2 has been very fitting of it’s description.

Every single attempt to sit on the “big boy” was brief.  Will is no dummy and when he sits, he’ll try to trick me by making a hissing sound (like pee hitting water) and clap for himself only to demand for a Peppermint Patty.  Ugh, that’s not how it works kid.  And by the way, this is why rewards aren’t a good idea.  

This happened all morning with absolutely nothing to show for it except for tears and meltdowns for being denied chocolate.  Oh!  And nap time started promptly after he threw one of Paige’s shoes in the toilet.  Deep breath.

More potty training will resume this afternoon and I’ll recap tomorrow.  One (of the millions) of tips I got is to be patient.  I think when he wakes up we’ll share a bowl of ice cream and just chill.  He can’t really go to Kindergarten in a diaper, can he?

Paige’s Baptism/Birthday party post coming soon!!

Another Post from Daddy

Having been an avid sports fan for as long as I can remember, I’ve always paid very close attention to statistics (the sports kind only, not the scholastic kind). Moneyball is my bible. Professional baseball organizations who don’t use statistical research to assemble their teams drive me insane. I can quote you random football player’s statistics from 10 years ago. The point is, I’ve always paid very close attention to numbers when it comes to sports.

Never in my wildest dreams did I think I’d need to be concerned with numbers when it came to my children. That all changed with Paige’s lissencephaly diagnosis. There’s one number, almost 6 months later, than I’m still having trouble accepting:

IMG_20140604_145009_353

This represents the odds of a child being born with Lissencephaly.

We won the wrong lottery.

Lissencephaly occurs in 11.7 per one million births in the United States, according to The Cortical Foundation. In other words, 1 in every 85,470 children are born with this disorder. As Steph mentioned in an earlier entry, there was nothing that could or could not have been done to prevent Paige’s condition. We recently found out the genetic mutation that caused her condition was NOT due to a trait that Steph or I carried. This is obviously good news for our future family planning purposes, as the odds of having a second child with liss, when the parents don’t carry the traits that cause it, shoot up to 1 in several million. But none of this helps Paige, and I continue to struggle with the fact that we defied the odds in such a catastrophically negative way.

It goes without saying that our disappointment/resentment rests with lissencephaly, and not our wonderful daughter. Paige is an angel. There’s nothing in the world that makes me happier than seeing her smile. She’s made a lot of progress with her therapy, is almost able to roll over on her own and is starting to reach for things. That might not sound like much to parents of a healthy child, but for us, it’s borderline earth-shattering. Remember, 6 months ago we were told to expect her to basically be a vegetable for the rest of her life. So the fact that she’s made as much progress as she has (in such a short period of time) means the world to Steph and I. We (in conjunction with our doctors and the truly wonderful folks with Pennsylvania’s early intervention program) continue to provide her with the best care, treatment and therapy available, and we’re fortunate to not have had any major setbacks at this point. Most importantly, and I can see it in her eyes, I know, that she knows, she’s loved.

As Paige’s first birthday nears, Steph and I have spent a lot of time reflecting. Reflecting on how our lives are now drastically different than we pictured when we got married four years ago, or even when we were expecting Paige at this time last year. Reflecting on all the good memories we’ve made as a family, as well as the not so good ones (like being holed up in a hospital for a week in January). What I think about, and am the most thankful for, however, is the way our families and friends have rallied around us to support Steph, Will and I in whatever fashion possible. My brother and sister have both spent hours keeping an eye on Will while Steph and/or myself had to be at the hospital with Paige. Steph’s family, although 3 hours away, has traveled out to Pittsburgh at the drop of a hat, with no questions asked, when we’ve been in need of assistance. (I know how important Steph’s family is to her, and I am thankful that they’re able to be as involved as they are despite the distance between us). My parents have spent many Saturday nights watching our kids, just so Steph and I could get out of the house. We’ve also received cards and donations from people we’ve never met in our lives. I admittedly have a somewhat jaded view of the world as a result of everything we’ve been through, but the multitude of kind gestures and notes we’ve received from folks near and far has restored my faith in humanity a bit.

We’ve met several families in the area who have a child with the same condition as Paige, and have basically formed our own support group. We’ve shared advice and positive memories, as well as stories of setbacks, heartbreaks, and obstacles that everyone has encountered. Based on everything I’ve heard from families who have a child with this condition, we are fortunate that Paige is doing as well as she is. Many children with liss need to have a permanent feeding tube inserted into their throat or stomach, as they have trouble swallowing. Paige eats like a cow, with no issues, and is gradually taking on more and more solid food. Aside from the infantile spasms she experienced a few months back, she hasn’t had any relapses with seizure-related activity. She has made chartable progress with all three forms of her therapy – physical, occupational and visual, and is very conscious about what’s going on around her.

We are realistic, however, and understand this could all change in a heartbeat. The toughest thing to come to grips with is the fact that there is literally no positive outcomes to this situation, as far as her long term health is concerned. Lissencephaly isn’t a disease, like cancer, that has a chance to be cured. When you google lissencephaly, you’ll see phrases like “no treatment,” “incurable,” “severe mental retardation,” “shortened life expectancy,” and “increasing seizure activity to the point of death.” If there is one thing I’d tell the parents of a newly diagnosed lissencephaly child, it would be to stay off the internet. Because you won’t find a shred of good news. I’m not saying you need to kid yourself about the realty of caring for a liss child, but if you spend all day scouring the internet looking for bad news, you’ll miss out on the opportunities for good times you have with your child. And as Steph and I have found, those good times are aplenty – regardless of what your child is or is not able to do. As we’ve said a hundred times, Steph and I are focused on the things we can do to help Paige, and all the joy she brings us. We are not, and never will be, concerned with her “shortcomings” that nobody has any control over.

In addition to the families we’ve met locally dealing with the same struggle, Steph is part of a large online network for parents of children with brain malformations. We all have a connection, because there are very few people on the face of the planet who know what it feels like to experience the pain we have. Steph has told me dozens of stories about liss children who have suffered major setbacks, or even passed on. It absolutely crushes me every time I hear one of these stories, whether or not we’ve actually met the family involved. And selfishly, part of that crushing feeling overtaking me is knowing that we’re likely to deal with the same setbacks someday, probably sooner rather than later. I’ve been able to keep it together, for the most part, throughout this ordeal, but I broke down sobbing a few weeks ago on the way home from work. Steph was telling me about a liss child who had been otherwise healthy, but suffered a massive seizure out of nowhere and passed away. This child’s family, despite what had to be unfathomable grief, managed to find some of the nicest ways to honor their daughter that I had ever heard of. There are certain days when the magnitude of our situation smacks me right in the face, and that happened to be one of those days. Because we know, with near 100% certainty, that we will someday feel the same grief as that little girl’s family.

I don’t like, or rely on, statistics as much as I used to.

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!

IMG_0620 IMG_0678 IMG_0738 IMG_0732 IMG_0755 IMG_0818 IMG_0815