mom blog

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!

 

 

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.

Hello, Internets!

I’ve started a blog!  That’s right, ANOTHER mom blog!  I endearingly call this the one-million-and-fourth mom blog on the Internet but I haven’t really looked up a correct number.  They are EV-ERY-WHERE and I can’t go on Facebook or Pinterest without seeing an article from a mother who knows it all about something.  I find most to be extremely annoying and would rather read celebrity smut over a vaccine debate.

So, why did I decide to start a blog?

To be honest, I’m not really sure.  I can not offer you hair and make up tutorials.  I am not an expert photographer.  I am not particularly fashionable or trendy.  I chew my nails like no other so nail art is out.  I don’t cook organically and I am the world’s absolute worst baker.  My organizational skills are severely lacking and I’ve lived in my house for four years and have very minimal decorations.  I’m not well-versed in anything except, previously said, celebrity smut and maybe crocheting.  Actually, I’d only consider myself an Intermediate level crocheter so that might be out too.

Anywho, I guess I wanted to start a blog because, if you read my About section, my daughter was diagnosed with Lissencephaly and I wanted to try to reach out and find people in similar situations.  Also, friends, family, and acquaintances have been asking about our family and there is never a short answer to give so this could be a way to communicate to the curious.

I’ve thought pretty long and hard about starting a blog because I didn’t know if I really wanted to put everything out there for everyone to see and I didn’t know how much time I would honestly dedicate to it.  I’m also not really sure if people would care!  But, ultimately I’m doing this for me and my family.  I would love to document family milestones and reach out to the very small Lissencephaly and Anycephaly communities out there.  I really want to keep this blog as real and honest as possible but also keep a positive outlook.  I will not be using the names of doctors, therapists, medical staff, and exact locations for privacy and safety reasons.  As life happens, I’ll take the good with the bad and find a way to push through and I promise not to obnoxiously use the word ‘journey’.