Love

The Bouncing King.

When I put my four year old to bed every night we read a book and say our prayers and it is a time I truly cherish.  I look forward to this time of day because it’s fascinating to relive the day through a little kid’s eyes and even on the most stressful days I find he always reiterates the good things that I’ve overlooked.

On a good night, we snuggle, talk about our day, read a book or two, and then say our prays before I tuck him in for the night.  Lately, due to illness and activities, it’s been the shortest book in his room, a quick prayer, and a kiss before it’s lights out.  Last night was one of those nights.

The book I picked was called The Bouncing King and I’ve read it dozens of times but never really paid attention to it.  However, when I was reading I stopped in my tracks and found that this silly little story oddly, and profoundly, struck a cord with me.

The story is about a happy, jovial king who loved to bounce at the simplest things.  Bees buzzing and lambs skipping, to be specific.  The people loved him in the kingdom.  There is also a prime minister who writes VERY IMPORTANT LAWS.  (That part is capitalized in the book).  For some reason, only gremlins could stop the king from bouncing and they live in the castle attic.

One day, the king bounces so high he goes through the ceiling and falls to the ground with a gremlin on his back, landing on the prime minister.  The gremlin whispers in his ear that he is not a king because he is not sensible and wise because of his childish bouncing.  The king is sad and wears heavy boots so he will no longer bounce so he could be a sensible king.  He makes a law that no one in the kingdom is allowed to bounce and everyone is dark and gloomy.

The prime minister is puzzled because he cannot see or hear this gremlin but he reads about them and understands why the king made his new law.  He takes matters into his hands and grabs the king and takes off his heavy boots.  The prime minister takes the king on a walk and the king feels lighter without the weight of his heavy boots.  The kingdom is happy to see him smiling again and the king sees the flowers growing, bees buzzing, and lambs skipping again.  The king feels a “spring in his step” and bounces higher than he’s ever bounced before and the gremlin falls off of his shoulder and the lambs squash him flat.

The story ends with the king bouncing everywhere again and he changed his VERY IMPORTANT LAW and now, every week, the people must go and watch the lambs to remind them to keep bouncing and be happy.

I got to thinking about the gremlins in my life that seems to sit on my shoulder.  You can read about some of them here, and while some of them have resolved, they have a tendency to pop up when I’m “bouncing”.

Lissencephaly has changed my perspective on a lot of things.  On one hand, I have new eyes for the simple pleasures in life.  I appreciate the good times a lot more than I used to and, as Andrew and I have said before, it’s brought our family a lot closer and we love a lot harder.  On the other, it’s exposed me to what CAN happen.  With the good, there’s always a look over the shoulder to see if the CAN happens WILL happen.  Is the good that is around me going to come crashing down in devastation again?  That, is my biggest gremlin.  The cause for me to put on my heavy boots and see things that might be darker than they really are.

Thankfully, I have a lot of prime ministers in my life taking my boots off for me and lambs to remind me to be happy.

I have my Will during our time to unwind to remind me of all of the little-big things that passed me by.  He helps me truly appreciate things from a child’s perspective.  One that doesn’t know or fear what’s ahead.  He lives in the moment and he reminds me every day to do the  same.

I have my good husband, Andrew, who is so patient with me and is there to talk about the struggles of being a special needs parent.  He is the only other person who knows exactly how it feels every day.  While he may not understand everything I go through, he “reads about my gremlins” and is always a calming voice with nothing but love and support.

Paige shows me that we can overcome so much more than is expected of us and she is happy to just be herself.  She makes everyone around her better simply because she’s Paige and that’s really beautiful.

Baby Jay shows me hope and healing every day.  I watch him grow and I’m in awe of the simplest things he does.  I take nothing for granted anymore and he reminds me to give thanks and love.  Babies are good at that!

I’m learning that I don’t have to wear the weight of the past.  I’ve realized I don’t like those heavy boots and I will make a daily decision to leave them in the closet, however, if I ever find I have them on, I have my prime minister and little lambs to help me take them off.  I’ll bounce to that!

 

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!

 

 

Anxietyville, Population:1

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This probably won’t be my most fun post and I’m really on the fence about posting it but I feel like it’s something a lot of people, especially special needs parents, go through and it might help someone else or help me find some solidarity in the situation.

For the past year, I have been struggling with anxiety/PTSD and I’m currently having a bit of a bad week with it.

Little back story.  I remember when Paige was around 2 months old one of the first inclinations something was off was her vision.  She wasn’t tracking objects and not really all that smiley.  Physically, she was too young to worry about any milestones but the vision stuck out and we were referred to a pediatric opthamolotogist.  The eye evaluation turned into an MRI which turned into a Lissencephaly diagnosis.  The feeling of being utterly blindsided is forever burned into my memory and took a major toll on my mental health.  Luckily and thankfully, I knew myself enough to know that such a huge change in my life would require a little extra help.  I found a counselor that specializes in navigating grief and loss and it didn’t take long until we started tackling how to process the pain of being a new special needs parent and all the ins and out of what that entails.  What I didn’t expect was just how many layers and ugly heads grief and trauma can have.  The hardest and ugliest, so far, has been the post traumatic stress that erupted about a 9 months after I first heard the word Lissencephaly.

I remember taking Will to his first gymnastics class last year and it was his very first activity that didn’t involve me being right there with him.  He was a new 3 year old with a ton of energy and absolutely loved the class.  For some reason, I was a nervous wreck about it and completely analyzing his behavior in the class.  I counted the number of times he needed to be redirected, made sure he was following directions, and didn’t take my eyes off of him for a second.  I knew my behavior was a little quirky but I chalked it up to not having control of the situation.  Then, that threw me off because never in my life have I been a control freak.  I knew something was different but couldn’t really pin down what it was.  I just knew I was anxious and couldn’t stop it.  He started preschool shortly after and it was another activity where he wasn’t in my care, but unlike gymnastics, I couldn’t be there with him to peep in.  Talk about stressful for me!

My anxiety continued monitoring and tracking Will’s development.  Almost everything he did I analyzed.  Thoughts of how Paige didn’t meet milestones before her diagnosis flooded back to me.  Thoughts of how I would run to her pediatrician and pour all of my observations out to them only to be told it was too early to worry.  I KNEW something was wrong with Paige very early but I didn’t know what.  And even though I knew something was up never in a million years did I think it was as severe as it turned out to be.  I always remembered this feeling when Will did something like get out of line, miss a turn, or needed to be redirected, I thought it meant something.  If he recited a movie line or walked on his tip toes, I ran and did an online evaluation for Autism.  I had that same gut feeling about Paige before but now I had it with Will.  I just KNEW something was going to be wrong, or off, or diagnosable.  Frankly, it turned into a debilitating fear that recent history was quickly repeating and my anxiety spiraled.  To cope, I bugged Andrew, my mom, and others incessantly over whether or not I thought Will was okay.  I would ask his teachers about how he was doing and if I heard something that wasn’t absolute perfection I’d freak out.  Even if all of those people told me a million times he was perfectly fine and thriving I just didn’t believe it.  Something incredibly rare happened once it could happen again, right?!

After lots of analyzing myself and help from lots of people, my grief counselor suggested I have PTSD from the diagnosis and the trauma was causing me to take out my fears elsewhere, in my case.. Will.

As a person, I felt relieved it was more than anxiety but as a mother, I felt absolutely terrible.  Here i have these two beautiful children.  One who is able to do many things and one who can’t do anything.  It’s like parenting on two different planets.  I felt like a monster but my grief counselor helped me realize that due to the trauma and stress, my instincts were not reliable at the moment because I was always going back to the worst day of my life.  She and Andrew both have described it like a veteran returning from war and hitting the deck when they see or hear a firework going off.  A typical person would see beauty in the sky but to the veteran it takes them back to a place of fear and fighting.  That’s how I felt when I was analyzing Will.  A typical person would see a child learning and growing joyfully.  Some areas faster than others but on a good and healthy track.  I saw future fear and panic of someone telling me he wasn’t doing things age appropriate and needed an evaluation, no matter what the activity was.

At that time, I was unable to look past the trauma and i was fearing fear!  I got a prescription of Zoloft and it helped tremendously.  I saw the fog lift and my rational thoughts were slowly coming back.  When an anxious thought came in my head I was able to talk myself off the ledge and realize it wasn’t me but the trauma that was making me feel that way.

One thing I promised myself was that I wouldn’t let fear dictate my life.  Andrew and I always wanted a big family and I wasn’t going to let my fear get in the way of that.  With the help from my doctors, I successfully weaned off my SSRI and was confident in my coping skills to get me through an unmedicated pregnancy.  I actually have been pretty good this pregnancy and have been staying positive.  Sure, I’ve had super anxious moments about the baby boy coming in January, but we’ve gotten good reports so far.

Now, when I reread what I’ve written it looks like my life was completely dire but, the funny thing was, it wasn’t.  I was/am cognizant enough to not let Will pick up on my insecurities.  Sure, I bother the hell out of Andrew and my mother, but I’m still able to enjoy life and have special moments with Will and Paige.  Even when I look back at that point in my life last year when I was really struggling, I remember the best things about Will and Paige.  That’s the funny thing about anxiety.  It’s not always there but it has the potential to always be there.

Unfortunately, this past week I’ve been thrown into Anxietyville, Population:1, again.  I’ve been dealing with a lot of the same insecurities.  Will had a speech evaluation that everyone gets at his preschool and it spiraled me back to the eye exam that led to so much more.  I fear this evaluation means a bigger diagnosis and his future will be riddled with therapy like Paige’s is.  Again, I’m fearing fear!  This time, I know that it’s not me and I can’t really trust my instincts at this time and I have to rely on those who are more rational around me.  And I know, whatever happens we are perfectly able to handle and deal with it.  And also, Will is the coolest kid ever and he’ll be just fine!

Frankly, it’s a sucky feeling to not be in control of your emotions and rampant thoughts.  I’m learning grief, trauma, and its recovery isn’t a straight line and I’m constantly picking myself back up.  I hope it evolves into a more natural place, but until then, it’s a struggle.  Currently, I’m able to rationalize but the anxious feeling in my gut just won’t go away and it’s like it’s a constant reminder of my negative thoughts.  Being hormonal and pregnant doesn’t help, either.

Throughout my struggle, I’ve met so many people who are going through a very similar situation and that’s helpful.  Many Liss parents I’ve met throughout our journey are going through with the same thoughts and grief.  Still, people don’t talk about issues like anxiety and PTSD because there is a stigma.  In my case, I don’t want to talk about it because it’s just not a fun conversation.  Also, I don’t want it to be my identifier.  All I know is that at my worst, I desperately wanted to talk to someone who understood how I felt and if this post makes someone feel less alone, than it’s worth it.

I know bad things will happen and I’ll get hard news at some other point in my life, but I know that the wave will pass and I’ll also get GOOD news and GOOD things will happen too.

You’ll Never Walk Alone

In a eulogy I recently delivered at my Grandfather’s funeral, I encouraged everyone in the audience to take time to reflect on, and be thankful for, all of the good things we have in our lives. Since I have previously been told (in a nice way, of course) that my writings on this blog have been a little on the “downer” side of things, I decided it was time to take my own advice! While my prior posts were totally honest and reflective of how I felt at the time (and still feel, to a degree), there are so many positives that our daughter’s health situation has brought to our family, both directly and indirectly. I wanted to take the time to highlight one particular way that Paige’s health has brought my family even closer together than we already were, and how our wonderful daughter has shown us what truly matters in life.

As Steph and I have both discussed extensively, we were completely blindsided upon receiving Paige’s diagnosis in December 2013. One of the first people we were referred to as a result of her condition was a vision therapist. When we initially met with this therapist about a week or so after her diagnosis, I was about as low as low could be. I had spent the whole week prior fighting just to drag myself out of bed in the morning. I had barely eaten anything, couldn’t sleep, and felt like I was living life in a daze. I didn’t understand how this absolutely perfect, beautiful child we had could have possibly received such a dire, life threatening diagnosis.

And then this therapist showed up at our house, and provided us hope when we had absolutely none. He was very empathetic and took the time to understand our situation and our feelings associated with it. But he also made it very clear that our daughter wasn’t going to be defined by a medical diagnosis, and that he would do everything in his power to get Paige as far along as her little body and mind would let her. He got me to look forward and think about all of the things I could do to help my daughter, as opposed to looking backwards and feeling sorry for myself. I will be forever grateful to this therapist and all of the assistance he’s provided Paige with, in addition to being there for my family and I during a very difficult time in our lives.

Anyway, this therapist recommended a few activities to help stimulate Paige’s vision, as her brain does not properly process the sights her eyes take in. One of the things he recommended was watching certain kinds of sports on television in HD, as the bright colors on things like hockey and soccer can be particularly attractive to any young child with a vision issue. If you knew me at all during the first 30 years of my life, you’d know that I thought the hockey thing was great, and the soccer thing, well not so much. But this was about Paige, and not me in the least, and I was willing to try anything within the realm of possible to help my daughter.

One of the first sporting events I put on the TV for her happened to be a Liverpool FC soccer game. If you don’t know anything about soccer (and I didn’t until about 6 months ago) Liverpool is one of the most popular and successful soccer clubs in England, all of Europe, and really, the entire world. And for whatever reason, Paige was immediately glued to the TV and fixated on it for the entire game. We’ll never know for sure, but I assume she was attracted to the bright red home jerseys Liverpool wears contrasting against the green soccer field they play on.

Interestingly enough, the “anthem” for Liverpool FC is a song called “You’ll Never Walk Alone,” which was originally featured in the 1945 Rodgers and Hammerstein musical “Carousel.” The song has been covered by many notable artists and bands, and part of it is even featured in a Pink Floyd recording titled “Fearless.” It officially became the anthem for Liverpool FC in the early 1960’s upon a commercially successful covered release of the song, and the phrase “You’ll Never Walk Alone” is even featured within Liverpool’s logo. One of the greatest spectacles you will ever see in all of sports is 45,000 Liverpool fans singing this song, completely in unison, during warm-ups for every home game. The words go like this:

When you walk

Through a storm

Hold your head

Up high

And don’t be afraid of the dark

At the end of the storm

Is a golden sky

And the sweet silver song of the lark

Walk on through the wind

Walk on through the rain

Though your dreams be tossed and blown

Walk on, walk on

With hope in your heart

And you’ll never walk alone

You’ll never, walk alone

This song, and the way it unites the Liverpool followers, immediately struck a chord with me. I thought about the words and how they could be applied to my own life. It made me realize that while things didn’t necessarily work out the way Steph and I had envisioned them, that our family has so much love, so much hope, and we weren’t going to let this curveball we were thrown define us. We’ve realized that Paige’s condition may bring us some “downs” in life, but that Paige herself is full of absolutely nothing but ups – joy, love, happiness – the only things that really matter in life.

So fast forward a year, and one of my favorite activities to do with Paige is watch Liverpool soccer games on Saturday and Sunday mornings. Paige may never be able to speak any words, but I can feel the bond between us strengthening every time we watch these games together, and for those 2 hours or so, nothing else matters. Lissencephaly, seizures, and all of the other bad stuff associated with her condition cease to exist, and we just have quality father/daughter time in our own unique way. I can see the love for me that she has in her eyes, and I’m confident she knows how much she is loved by Stephanie, Will, myself, and the rest of our family.

You’ll never walk alone, Paige. You’ll never walk alone.

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Seizure Shenganigans!!

Well, I’ll start off by saying that seizures suck.  I haven’t posted in a while (surprise, surprise) but since my last one we’ve had a few jaunts in the ER due to seizure activity and illness.  In the life of Lissencephaly seizures are almost always present and our situation is no exception.

A few months ago, Paige started a low dose of Keppra after a breakthrough seizure (I’ll get to this in a minute).  Thankfully, there have been no harmful side effects like irritability, mood swings, lethargy, and rage.  In fact, I’d say we have only noticed positive changes in her demeanor since starting.  She’s more alert, cognitive, and has a wider range of emotions.  Sure, she might wail and cry with a little more gusto than before, but on the flip she’s been giggling and laughing with vigor, as well.

Since she’s approaching two years old, I’ve been warned by her neurologist that since she’s growing bigger and more faster we might have to adjust her dosage more frequently.  It really depends on the frequency and amount of breakthrough seizures she’s having.  Coupled with an EEG we might come to find that we need to change or add a completely different medication to fit her type of seizure(s).

The past couple of months I would definitely say we’ve seen a “breakthrough” seizure.  So far, I’ve seen 2 and they’ve been pretty nasty.  The first one happened right before vision therapy and and she was in her Special Tomato chair.  Suddenly, she doubled over and got really rigid.  Her breathing became labored and she grunted and drooled.  Her left arm was raised and trembling.  Most likely, this was a tonic seizure and it clustered on an off for about 25 minutes.  That’s a REALLY long time!!!

During this time I took a video of the activity and called Andrew to come home from work.  We made it to the hospital and was hooked up for a one hour EEG.  Paige didn’t preform for the neurologists and she was stable the entire time.  However, based on the severity of her cluster, Keppra was prescribed.

I’ve honestly really relieved she’s on medication.  Aside from her ACTH, she’s been able to dodge any type of seizure activity and medication for over a year and a half.  It’s a nice security blanket to have and I feel better with the extra help.

Fast forward a few weeks and we have a young Will with a fever and a cold.  His fever was treated with ONE dose of Tylenol and lasted half a day.  A few days later Paige comes down with the same thing and I was hopeful it would be mild like her brother’s.  WRONG!  Paige started throwing up and the next few days were spent trying to get her to eat and drink.  She was limp and her fever was high so I rushed her to CHP where she received 3 bags of fluids, oxygen, and IV antibiotics for a night.  She was incredibly sick and it was so hard to watch.  What’s kind of crazy is that fevers and illness often set off seizures and she had absolutely NONE throughout the whole ordeal.  After a few days of rest she was back to her old self!

And now we come to this past Monday.  This story is going to look a lot like the first because it was during vision therapy (again) and it happened in the Special Tomato chair (again) and it lasted for about 15-20 minutes (you got it.. again).  When she came to she was perfectly pleasant and happy as a clam.  Can you say roller coaster of emotions?!

Off we go to the hospital but this time I refused an EEG because I knew she wouldn’t preform and it would be pointless.  Since she has a seizure disorder and they are going to happen I requested rescue medicine.  I can’t go to the ER every time she has activity so I’m glad to have these around.  She was prescribed Diastat and Kolonopin.

Diastat is pretty hardcore and I have to call the paramedics to monitor her when I administer it.  This will also mean another hospital stay because this drug is essentially Valium and can labor breathing and slow her system down to dangerous levels.  This drug will also knock her out for a day.  I also requested Kolonopin because it is less intense and instead of being out of it for a day, she’ll most likely only sleep for a few hours.  I feel a lot more comfortable with this drug but still hope I don’t have to use it.  Both of these drugs have to be given if her seizure lasts more than 5 minutes and since both of hers lasted a lot longer, the odds that I won’t have to use them are pretty darn low.

I’m actually pretty happy with the way I’ve handled myself during Paige’s seizures.  When I first thought of Paige having one I would get really anxious and get really scared.  But after being there while she experienced one, I was actually really calm and talked to her in a soothing voice while she was struggling.  When it was over, I just did what I thought I had to do and it was over.  I’m not saying that I loved the experience because I hated it, but it wasn’t as scary as I imagined and I’m kind of proud of myself for not freaking out.  Andrew and I made a pretty amazing team throughout and Paige handled everything like a rock star!!

Happily, our little Paige recovered nicely and she’s been having really good days and is working hard in her therapies.  She’s smiley and laughing, scooting around on the floor, and watching her favorite show, Dora and Friends.  Will is loving school and trying to beat cabin fever by building forts and calling people on the phone.

Picture time!

Family Updates (sorry to leave you hanging!)

It’s been a while since I’ve posted and in my last post we were preparing for Paige’s 24 hour EEG and I apologize to have left everyone hanging with the results.

Long story short, there were no changes from her last EEG.  That’s good news!  BUT, after this one, her neurologists recommended putting her on anti-seizure medication.  While no seizures were present, Paige’s EEG showed to have a lot of “seizure like tendencies”.  After talking about the option with Andrew, we initially decided to hold off on the medicine because she wasn’t actually having them.

We’ve noticed some questionable movements from her like squinting her eyes, stiffening her muscles, and holding her breath.  We kept a close eye on them and sent videos to her neurologist asking his advice.  Her neuro called back and told me the movements we were seeing didn’t look convincing to him and he supported our decision to hold off on medication.

A few days later, however, her Occupational Therapist was working with her and noticed the clenching of the fists, holding of breath, squinting, and hunching over all at once.  Before, they were here and there and were very quick.  This time, her activity lasted a half an hour and they were hard to stop.  Paige’s OT was concerned and agreed it definitely looked like something.  We cut the session short and I decided it was time to go to the hospital.  Luckily, Andrew was on his way home  from work and I was able to take her straight to Children’s.

When we got there, Paige’s activity was still present and the neuros on call requested a 1 hour EEG.  While they were asking me questions and getting ready to start, Paige started clenching, held her breath, and definitely stiffened up.  Of course, while I hate to see this, I was relieved the neuros saw it in person.  Right then and there, we decided it couldn’t hurt to start the medicine.  Her doctors agreed she was stable enough to go home and we left with a prescription for Keppra.  The medication works on a number of seizures and has very little side effects so I was happy about that.

Paige’s regular neurologist called back a week later and said that he read over both of her recent EEGs and told me that no seizures showed up and she was NOT having them.  Again, GREAT NEWS, but it still didn’t explain her questionable movements.

Funny thing is, the medicine seems to be working in different ways!  Her “seizure like activity” has definitely lessened and she seems to be more cognizant.  When she’s mad, she’s M.A.D!  When she’s happy she laughs more.  A wider range of emotion is present and we’ve started to notice more communication from her.

Before we do anything with her, we talk to her about it and ask her questions.  Often, we know exactly how she feels about it.  She loves her bath and when we ask if she wants one, she gets noticeably excited.  When we ask her if she’s hungry she grunts and we know that means ‘yes’.  When she SEES her stander she SCREAMS!  We know she hates that.  Paige obviously gets excited over bath, food, car rides, shopping trips, and when Dora the Explorer comes on.  She does NOT like her stander, toys with loud bells and whistles, and getting her diaper changed.

This may be a pretty big goal, but I’m going to try to ‘potty train’ her soon.  I know that she’ll always be in a diaper, but I’m going to start to sit her on the potty to get her used to the feeling.  Maybe some day she’ll learn to hold it or wait till she gets the potty cue to actually go in it.  Paige constantly shows us she’s more capable of doing things we didn’t think are possible  so it’s worth a try.

Paige’s big bro, Will, is also doing well.  He got completely spoiled over Christmas and is still loving his toys.  He loves school and playing with his buds.  He’s super creative and has a wonderful imagination!  Paw Patrol and Ninja Turtles reign supreme in our house and he loves to play X-Box (using a fake controller) with his daddy.  He’s also very excited about taking ice skating lessons in March!

Next month, Andrew and I will be celebrating our 8 year ‘dating anniversary’ on a Gateway Clipper dinner cruise and will thoroughly enjoy our date night!

November Thanks

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It’s November and social media is abuzz with daily thankful posts to commemorate the Thanksgiving season.  Many people find these posts annoying, as we should be thankful year round, but I happen to love the posts.  I love the positivity and insight on my friend’s lives and it’s a nice break from political memes and Huffington Post articles.  While, it’s true, often times these posts are predictable and trite (Day 1:  I’m thankful for my mom and dad because … Day 2:  I’m thankful for my husband because… Day 3:  I’m thankful for my job, house, Diet Coke, friends, whatever else) it’s nice to reflect on the gifts and blessings you have.  Now that I’m 29 and far from my college days, my feed is filled more with weddings and babies than parties and apartment lounging — ahhh I miss those days!  

With that goes this one thankful post I probably see the most:

Day XX:  I’m thankful for my healthy children.

Before last year I would have never thought twice about this one.  I probably would have posted, if I did the 30 Days of Thanks, something very similar myself.  However, this year it stings.  When I see it I literally wince (and yes, I’m using the word ‘literally’ correctly.  I can upload a video if you need proof) and I get a little sad.  The word ‘healthy’ just rings in my ear and it’s hard to shake.  Until today.

Today, I came across one of these posts while I was eating lunch with my kids at the table.  Before I got to feel my heart sink, Paige kicked her feeding chair and gave me THE. BIGGEST. GRIN.  In that moment, I realized that I’m thankful for my unhealthy child.  I am thankful that she’s HERE.

My child that has a brain malformation that she did not ask for.  My child that will struggle for every “inchstone” she reaches.  Our family will have to carry her and tend to her needs the rest of her life.  Statistically, my child isn’t supposed to survive childhood.  While she’s not currently “sick” she is considered “terminal” and that’s a lot of weight on the heart already.  My child might not be considered “healthy” but she’s here.

She’s here.

SHE’S HERE!

If I were to write a thankful post for my children it would be this:

Day Every:  I am thankful I get to hold you both physically and in my heart.  I am thankful that I get to be your mother and carry you in any way you need me.  I’m thankful that you are with me and are exactly the person you are.  I am thankful for the things you can do and also the things you can not do.  I am thankful that you are here.

From here on out there will be no more literal wincing or sunken hearts.  I am thankful for both of my children, healthy or unhealthy.  And given the chance, I’d do it over again and again and again and I’ll always be thankful that they’re in my world.


It’s been a while! Navigating my way through parenting.

I haven’t updated in close to a month and that’s really far too long.  Quite a bit has happened and we’ve had some new and exciting beginnings!

First, on August 30th our Will turned THREE!  It’s taking me a while to actually believe he is now a preschooler but he is and he couldn’t be more excited about it.  Having a late August birthday makes starting activities and school a little trickier because he will either be one of the very youngest or one of the very oldest.  After weighing the pros and cons of both we decided to place him in the 2-3 year preschool program at a little church down the street.  It is a one day a week class and Will absolutely loves it!  He’s in a classroom with 3 of his friends and he is one of the oldest in the class.  A regular morning (which is 2.5 hours) consists of play time, story time, guided areas, songs, and snack time.  When school is over, the parents meet the kids at the door and I’m always greeted with a smiling Will who proudly hands me his “to-go” folder with art.  When we go home the art is promptly tacked up on our sliding door for all to see.  He’s officially a big kid now!

His next big activity is a gymnastics class.  Will is one of the youngest kids in this class but he loves it!  The class is great because they work with what three year olds love like running, jumping, dancing, somersaulting, and more.  It’s also a pretty structured class and the teacher is sure to keep them on task.  There are a lot of multiple directives, stations, and steps that help the kids focus while playing at the same time.  I’m pretty impressed with the program but more impressed with the teachers that can wrangle a group of small children for close to a whole hour!

My goals for Will in preschool and gymnastics are to learn to play in groups, take direction from adults other than Andrew or I, and learn and grow in his own way AWAY from me.  Most importantly though, I want him to have fun!  If I were being honest, and I am, I have to say that I’ve had a little bit of a hard time letting go of the reigns.  He’s only really ever been with me during the day.  I was the one to be responsible for his schedule and social life and now I’m not the one to do it all of the time.  It’s a hard thing to just hand your kid over to someone you don’t know and not know what’s going on.  I often wonder if he’s behaving himself?  Do his teachers see what a great kid he is like I do?  Am I missing any developmental red flags that they’ll blindside me with?  Is he on track?  Am I being overbearing? Is he having FUN?!

It’s funny, if I was not a parent of a profoundly disabled child, I’m not sure so many anxieties would run through my mind.  With Paige, we knew something was off in her early months but the actual diagnosis felt like we were hit by a bus that we didn’t see coming.  I guess a lot of my fears with Will going to school and the vulnerabilities of other people “analyzing” my child kick my senses into overdrive and I fear the worst.  A fear that I’m going to be told something is wrong with my typical child.  I honestly never thought about how Paige’s Lissencephaly diagnosis might affect how I parent my other child and I’m learning that parenting the two have to be completely different.  Because THEY are completely different.

Someone put to me like this.  As a mother, I have a toolbox I use for my children.  When Paige was developmentally delayed and we tried to reach for answers, I had to use a hammer to get them.  My hammer was nagging doctors, doing personal research, and basically demanding an answer as to why Paige wasn’t acting like a typical baby her age.  We KNEW something was off and we pounded away and got validation in the form of her diagnosis.  I had to use the hammer because she needed me to advocate for her in that way.  In Will’s case, I’m having trouble putting my hammer away.  If I get a school report that he’s not playing with other kids or not sticking to a play area the designated time, my emotions go to CODE RED!  If he doesn’t follow the exact procedure or goes astray, I feel the need to bring out my hammer again.  In my head, I go back to the way I felt with Paige.  I think because something doesn’t go completely “on course” something must be wrong.  In my head, if Will doesn’t do something he’s supposed to, there must be a reason for it and I want validation.

The only difference is… Will doesn’t need me to advocate for him the way Paige needs me to.  What he is doing is perfectly normal for a child his age to do.  He’s developmentally appropriate for a typical three year old and, bottom line, he doesn’t need me to use the hammer.  He needs me in a different way.  He needs me to not expect perfection because nobody is and I’m far from it, myself.  He needs me to trust that his father and I have prepared him for a setting that doesn’t include us.  He needs me to trust that he’ll be fine! Mostly, he needs me to be his support and biggest darn cheerleader in the world.  I know my kid.  I know he’s fun-loving, smart, active, curious, hilarious, affectionate, inquisitive, and an absolute joy.  He’s got the best qualities and I have to let go of my fears that the other shoe is going to drop.  For the past year, we’ve gotten used to and accepted that Paige is on her own path and unlike any other’s.  What I’m now finding is that navigating my typical child’s growth isn’t in the same world.  BUT.. I’m getting there!

I wonder if any other family has felt this way?

In other news, Paige is showing growing leaps and bounds in her own development! She is putting more pressure on her legs, playing with toys in both hands, and even starting to feed herself with a spoon! She’s continually happy and is the most easygoing kid. She’s incredible!

Dad, again!

Before another post from my husband, I want to take the time to make a bit of a retraction about a statement I made in one of my very first posts.  I’ve been meaning to do this for a while but I got the perfect opportunity to do so when Andrew emailed me this blog post.  After weeks of sadness and extreme darkness and grief, we had a few moments of light where we laughed.  We enjoyed the day, we smiled, we functioned.  Almost like we did before we got a diagnosis.  I was on a high and felt ‘good’ for the first time in a long time.  In that post, I believe I used the word ‘promise’.  I ‘promised’ that life would go on and some sort of acceptance and a new normalcy would occur.  I was wrong to do that.  As much as I would like to think that happens, it’s not my place to even say that.  Not one experience is the same and there’s no one who can tell you how you’ll feel or even how TO feel,  for that matter.  I think I already knew that, even at that time, but I wanted desperately to feel ‘normal’ again.  What I want for this blog is to share our experience and our journey but also shed some hope, if any, can be found.  We’re less than a year into this journey but we feel the need to document it all and the beginning was a whirlwind.  One day, I hope to look back and reflect on how far we’ve come but the truth is, I really don’t know.  These experiences are our ‘here and now’ and we can only continue to take things day-by-day and stay as optimistic and hopeful as we can in the process.

-Steph

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One of the primary reasons we started this blog in the first place was to provide hope to a family out there who just received a lissencephaly diagnosis for their child. The day that we learned about the severity of my daughter’s condition was the most gut wrenching day of my life, and if we can help somebody else navigate their way through such a day, and subsequent days, then we want to make that happen. When we got this news at the end of last December, I couldn’t eat for days. I felt like there were two twenty pound weights strapped to my shoulders when I tried to roll out of bed in the morning. I don’t think that any words I could use would describe the feeling I had back then, but it was basically like living in a movie – a really, really long and depressing movie. I’m lucky that my boss / employer were very understanding of the situation and gave me some time off, as I could barely bring myself to get out of the house, let alone focus at work. Steph and I felt like we were on an island. The two doctors in my family, AND our pediatrician had never even heard of this syndrome before, which tells you how rare this diagnosis truly is. The internet provided nothing but more painful news. Everybody was as “there” for us as they could have possibly been, but there’s nothing anybody can do or say to make you feel any better. I obviously very much appreciated all of the support we received from family and friends, but my point is that you cannot possibly understand what Steph and I went through, unless you’ve been through something similar yourself.

We had so many dreams. Steph always talked about singing and dancing around the house with her little girl. I envisioned dropping her off at college one day (I, of course, assumed she would go to Pitt) and lecturing her about what pigs men are until they’re about 25 years old. We talked about all kinds of family vacations and activities that we wanted to partake in, and pictured a world where Paige and Will would always be playing, running, and throwing blocks at each other. And all it took was one hour at a doctor’s appointment to feel like lissencephaly had robbed us of all of this.

If you take nothing else away from this post, or this blog in general, just hold on to this one thing: having a child with a lissencephaly diagnosis doesn’t mean that your dreams will be crushed or eliminated. You may have to “tweak” or “adjust” your dreams a bit, but this absolutely will not make them any worse. It’s going to take time – probably more time than anybody would like – but, I can say from our experience (and that of many others we’ve met on this journey) that we’ve gotten to a point where we accept this and the things that happen as a result of lissencephaly, and it’s just becoming a part of our normal daily routine. And we realize that all of the things we were worried about “losing” aren’t really lost after all. Let me put it this way – just because we might have to take our kid to Sesame Street Live in a wheelchair will not take anything away from that wonderful memory with our children.  We feel there is light at the end of the tunnel, even when we feel like we’re at our worst in coping with this situation.

I’m not trying to sit here and act like I’m the world-renowned expert on dealing with a liss child. We only got this news 8 months ago. But I feel like enough time has passed that my perspective on this situation is relevant. And I want to state, for the record, that my family and I are in as good of a place as we can possibly be with this. I’m also not trying to fool anyone here – there are going to be days that suck. Our daughter has responded to this condition as well as she possibly could have to this point, but we still have days that suck. But let me assure you of one thing – you will have many more good days than bad. Your child is not defined by lissencephaly or his/her “shortcomings,” and there will be plenty of opportunities to make wonderful memories with your son or daughter. As I mentioned in an earlier post, if you spend all of your time worrying about negative things that lissencephaly can lead to, then you’ll miss out on a world of opportunities to make lasting memories with your family.

Having a Liss child will help you to appreciate the “little things” more and really put life in perspective for you.  At least, it has for us.  When I hear about “problems” that other parents are experiencing with their children, I just have to chuckle, because they don’t know what real problems are. Please understand, however, that I am not resentful towards them – I understand that, in their world, these things that are downright petty to me seem like a big deal to them. That’s the world they live in, and that’s perfectly fine. To be honest, having gone through what we have, I am happy for these families that have perfectly healthy children to worry about, and that’s the truth. But when you’re told your child is likely to experience massive seizures that will eventually lead to her death, color coordinating outfits for a family photo shoot suddenly becomes irrelevant nonsense. Again, there is no resentment here – I just have a different perspective on things than most parents would, and would like to think it’s made me a better person/father/husband.

Even though our child may not be able to do a lot of the things we envisioned when Paige was born, we find a way to replace these things we’ve dreamed of with equally good moments and memories. For instance: our son Will loves to play basketball in the hall with me. We always pull Paige over in her little tumbleform chair so she can play along with us. Will always makes sure to “pass” her the ball a few times, and she enjoys watching us take turns running up and down the hall shooting airballs. So, while she may not be able to physically shoot the basketball, she is a part of it. She’s there, she’s present, she’s included, and it makes her happy. And as a parent, there is nothing more you can wish for from your child than happiness, and I already have wonderful memories of our family basketball nights.

When you are constantly reminded of what your child cannot do, it makes you that much prouder when they achieve something that every doctor in the world told you she wouldn’t be able to do. At 14 months, most parents are trying to child proof their house and keep their kid from destroying very expensive electronic equipment (as was our experience with Will). For Paige, the fact that she is gripping on to and shaking a rattle is a monumental achievement for her, and I couldn’t possibly be any prouder. I am as proud of Paige for being able to use a rattle and eat solid foods as a “normal” parent would be of their child achieving a 4.4 GPA and getting into Harvard. The point of this post, and this blog in general, is that there is hope. Appreciate your child for who he or she is, and their so-called “shortcomings” will not even be relevant. And their achievements, against all odds, will make you prouder as a parent than you ever dreamed you could be.

My daughter is wonderful, she’s an angel, she’s a warrior. And most importantly, she’s my daughter.

Milestones, Summer Recap, and Pics!

It’s the middle of August and can’t believe summer is almost over!  I have to admit, I am a little ready to slow down but we’ve had so much fun moving and grooving all summer that I’ll be sad when it comes to an end.  Also, at the end of this month, we will have a THREE YEAR OLD and we’re certainly having a hard time with that.  How did that even happen?!  Where did the time go?!  Didn’t I just have that little tornado of fun we call Will??

Last summer, I had an almost two year old and a newborn and I remember joyfully thinking ahead to this summer and what it would be like having two toddlers.  I envisioned them playing together, arguing over toys, sharing snacks and juice after a trip to the park, wresting them to take naps, and a huge mess in the bathtub before I got them ready for bed.  As hectic as this sounds, it was something I really looked forward to.  I actually enjoy the chaos that comes with kids and I think it’s the purest labor of love and something that makes me incredibly happy.

Fast forward to what this summer actually is.  Well, let’s see.  Things certainly are… different.  But at the same time, in many ways it’s not!  While I technically have do have two toddlers, it feels like I have one toddler and one baby.  While that sometimes makes me sad, it’s really not at all!

It’s. Just. Different.

Sure, my kids might not pass a ball back and forth or play with blocks together.  But, when I see how Will talks to Paige and the look on her face when he rolls her on the floor, I melt.  When they’re in the bath (which is one of Paige’s favorite things) she annoys Will by kicking and splashing water in his face. And, that’s their version of fighting!  When Will get feeds Paige her pureed food and tells her “Good Job!” as he wipes her mouth with a spoon, I feel like we did something right.  It might not be what I envisioned but it’s still pretty amazing.

The plus sides to our new normal are that Paige is perfectly content to hang out anywhere.  She’s good in her car seat, a stroller, my Ergo 360, a feeding chair, or on the floor… I mean it when I say ANYWHERE!  I only really have one toddler to chase around.  I still feel like I can truly give all of my attention to both at the same time.  (I know that doesn’t seem like it makes sense, but I don’t feel like I’m stretched too thin.  Um, most of the time!) I can strap Paige in her carrier and chase Will at the park.  I can do therapy with Paige and talk about shapes and numbers with Will.  Since Paige only complains when she’s hungry, I only really have one whiny kid at a time.  Since Paige is super easygoing I don’t get stressed out if she doesn’t nap like I do with Will.  At doctor’s appointments I only have to entertain one child and I don’t have to ration iPad time with two wiggly and impatient children.  We can still go out to eat as a family, travel to visit family, go to a movie, and make day trips.  We can still have fun!  We are doing everything I envisioned we would but it’s just in a different way.  It might need a few more gadgets and extra planning but we’re doing it!  We are doing it!

Another reason that we’ve been on-the-go this summer is because we can.  With Lissencephaly, you just don’t know what will happen from one day to the next.  Right now, she’s doing really well and it’s thrilling to watch everything that she does. However, we do have this little voice in our heads reminding us that one seizure or illness can change this.  One day, she might need more help, more equipment, more medicine, and more care that will make things even more difficult.  Knowing that, in a way, helps us to live more in the moment and more apt to do the things we want because, right now, we can.  You know what though?  That sentiment could go for anybody.

This summer meant a lot to me for many different reasons. It was certainly a lot different than I ever planned but it was still absolutely incredible! One of the very first things Andrew said after we got a Lissencephaly diagnosis what that it will not make our lives any worse, it will just make them different. And that is the truest thing that I’ve ever heard.

Like I said before,  Will is turning 3 and he will be going to preschool and start gymnastics in September.  Between both of those activities, I’m hoping he learns, burns some energy, and has a blast.  This will also be the first time he’s in activity where I’m not in the room. (Okay, maybe the second.  I had jury duty for a week when I was pregnant with Paige and Will had to go to a daycare for a week but I don’t really count that!)  I’m actually really excited for him and hopes that he takes turns, shares, and plays with his friends and listens to his teachers.  He’s a great kid and it’s awesome to see him grow!

As for Miss Paige, she has had a huge burst in development and we couldn’t be more thankful!  Since her birthday, four teeth have popped through, her hair is getting super fuzzy, and her motor skills are.. well.. motoring!  Paige is a thumb sucker and it’s so cute to see.  She plays with her hair to self-soothe and she is starting to reach more and play with toys.  She shook a rattle for 40 seconds and she did it purposefully!  She uses her feet as feelers, which I’m told is a bad habit, but I’m thrilled that she even has a bad habit!  Her physical therapist thinks she’s super close to sitting up but needs more trunk support but we can tell that she’s getting a lot stronger week by week.  Paige now eats 3 full 6 ounce homemade pureed meals a day and she’ll hopefully be drinking whole milk over formula soon.  She can chew bananas, pears, avocados and today she had 20+ baby puffs!  We go for an evaluation at the Children’s Institute at the end of the month to look for possible equipment Paige might need in the future to make all of our lives easier.  She’s pretty freaking amazing for doing all of this but she’d be pretty freaking amazing even if she couldn’t.  She’s a delight and we’re thankful she’s ours.

Paige has another eye appointment at the end of the month to check on a sty she has on her left eye.  Her pediatrician thinks she might need a simple surgery on her tear ducts but we won’t know until we see how the antibiotic works on it.  I’ll keep you posted and Happy End-of-Summer!

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