Enjoying the Season

I’ve been slacking off with my blogging again and I’m going to at least partially blame it on the beautiful weather we’ve still been enjoying, at least considering that we’re halfway through November. Maybe my memory is just so terrible that I forget the weather from year to year, but this year seems warmer than usual for this time. And I’ll take it!

This lengthened stretch of favorable weather has added more adventure time to our calendar. We were able to squeeze in a nice fall mountain hike in hotter temps than we anticipated, took an extra post-Labor Day camping trip, and even managed to make a second trip to Acadia National Park for the year, thanks to an old friend’s wedding.

A few weeks ago we took an entire day to just drive around and check out the foliage and scenery. We stopped at a few sites we hadn’t been to before and took time to stop and take pictures along the way whenever we thought we found a good spot for it. It was wonderful! No schedule, no real plan, just the family and a full tank of gas in the car. Of course, no weekend trip would be complete without some good food, so we stopped at a wonderful brick oven buffet spot.

Many people have a favorite season but I’m not sure I can pick. Even winter holds a special place in my heart. If I had to choose, I think I would have to pick autumn. The colors on the trees are beautiful, fresh fruits and vegetables are everywhere, and the air is so crisp it feels like your lungs are waking up.

Another thing we’ve been making into a tradition of sorts is apple picking. Unfortunately, we only got to go once this year, but it was great! Picking apples is so fun and can be done very quickly, if necessary. The orchard also makes a great place for picture taking so don’t forget the camera. I like to make a few pots of applesauce and a pie or crisp of course!

In New England, we know what is coming our way soon. Just around the corner is snow, ice, and months of freezing temperatures. Let’s make the most of what we have left of fall!

And then this evening, I was reminded of another season that is now upon us – the holiday season. This time of year means many different things to different people. It means many things to me also but tonight, above all else, it reminded me to be thankful.

I went into Walmart to grab a few things and they already have an angel tree up with Christmas requests from area children. There were many requests from youngsters wanting the newest video game or superhero toy, but another one caught my eye. A fourteen-year-old had requested a set of flannel sheets. Many tags had a second choice ‘or’ option, but this one did not. All this boy wanted was a set of warm, new, clean sheets. Presumably, he also needed them. It made me wonder what his home life is even like. Does he have enough food? Does he have clothes that fit?

We all have struggles. I dare you to show me someone with a perfect life. It’s easy to get caught up in our own problems. But it can always be worse, and we don’t know the things those around us are dealing with.

This holiday season, and every day: be thankful, be giving, be kind.

I Feel Free!

Today we told the world, or at least the Facebook world, all about our dear son’s struggles. The cystic PVL, the cerebral palsy, all of it. Of course, I still put my positive spin on it, but it’s out there. And now that it is, I feel free! Only a few of our close family and friends knew before this morning.

I thought this would feel like a weight had been lifted, but that is an understatement. It feels like we’ve been keeping this big secret for so long. For what reason? We’ve accepted it, we’ve even embraced it! I guess we’ve continued making excuses for so long to protect everyone else. Why?

Maybe we’ve been afraid of the sympathy – the looks, the not knowing what to say. We don’t want that. We just want everyone to continue treating M like they have been. He’s still the same little boy he was before everyone knew. Of course, we are getting lots of support and well wishes, but what I’m really looking forward to is fewer questions (hopefully).

The advantage of sharing this news with the Facebook world first is that I didn’t have to see people’s reactions as they received the news. Selfish? Maybe. I’m an easy crier and I hate it. If I can avoid having a teary conversation with someone, awesome.

Why today? I’m not totally sure about that either. M and I were having a great morning together while Daddy was out hunting. It just felt right. Most of the time I don’t think about his ‘disabilities’, I just see him for the amazing little child that he is. And that’s all I want – for everyone to just see him for that.

If you’re holding a secret for the protection of others, let it out. I bet you’ll feel better too!

Speech Evaluation Day

After a laid back weekend of taking in the beautiful colors off the season, it was back to reality for us this morning. M had his first speech therapy appointment to have an evaluation done. I pretty much knew what we were going to be told, it’s obvious he is behind, even for his ‘adjusted’ age (due to prematurity).

We have been extremely fortunate in that we have all liked almost all of M’s providers right from the start. His new speech therapist/pathologist was no exception. She was friendly and welcoming from the moment she saw M and me sitting in the waiting room. The attitude and first impressions of people go SO far! I’ve met a few providers that I hoped to never see again but largely, our experiences have been positive thus far.

For the next hour, we discussed M’s vocabulary, the noises he does and doesn’t make, his eating habits, and so much more. I struggled with some of the questions. Does he use the ‘ca’ sound? I think so……. Does he understand ‘no’? I think so…………… (if looking at me, smiling, then continuing to do what I asked him not to do is understanding, than yes, he gets ‘no’ to a tee! J) Although I ‘converse’ with him daily, I hadn’t thought a lot about the specific sounds he was and wasn’t making. I called to mind most of the words that he knows but not each specific sound. Does anyone else have a hard time answering some of the doctor/therapist evaluation questions? Even at our regular checkups sometimes I really have to stop and think about it.

The therapist concluded that M was behind, just as we knew, but she is pleased to see him trying and getting frustrated at times, seemingly due at least partially to a lack of communication. We’re all hoping the frustration will help motivate him to learn new things. She’s encouraging us to add in signs (more, done, play, etc.) along with our words to help while M works on enlarging his vocabulary. She also noted that oftentimes, kids like M, especially with cerebral palsy, are already working so hard on their motor function that the speech takes a back seat. I can definitely see this with my son. You can tell that it is physically taxing for him to sit up and concentrate on anything for more than a minute or two. I’m sure that adding more speech while he’s in that position is overwhelming.

It breaks my heart to see my M struggle with doing all of this, but I know we have to keep pushing him to find new ways to communicate and play. Sometimes I wonder how much good speech therapy (and PT and OT for that matter) does, but it’s worth a try, right? I think that it is worthwhile to have outside opinions and ideas. We’ll try anything to give M every opportunity we can!

Kind of along these lines, a friend posted a link the other day to a great blog post. My child still has a ways to go before being four years old, but I feel the article rings true for any age. http://www.huffingtonpost.com/alicia-bayer-/what-should-a-4-year-old-know_b_3931921.html. We put our children through enough without comparing them to other kids and ‘standards’. What is ‘normal’ anyway?! It’s important to remember that all children learn at different paces, it doesn’t necessarily make them more or less intelligent.

Have a great week!

Bullying – Everyone’s Responsibility

It’s September. Leaves are starting to turn from summer green to rusty orange and brilliant red; the temperatures are slowly falling; and children are headed back to school for another year of fun and learning. Unfortunately, this isn’t how many of our children experience school anymore thanks to bullying.

I remember when I was in school, longer ago than I’d like to admit, there were issues with bullying here and there. Stacey pulled Jenn’s hair because it was red and not brown, Josh told Ken he smelled funny, and Lily ignored Ben because his teeth were crooked. Unkind words were exchanged but life went on. I remember very few true ‘fights’ – and that wasn’t until high school. Bullying nowadays seems very different. Just a couple of days ago I read a tragic story of a nine-year-old that took his own life after being bullied continuously. NINE! Something needs to be done!

School has been back in session around here for almost three weeks. Already, I have an extended family member that has not once, but twice, complained about the bullying treatment her children have been the victims of at school. These aren’t high school kids, or even middle-schoolers. They are both in ELEMENTARY SCHOOL! One was called ‘fat’ and threatened to be slapped in the face because she wouldn’t give another girl one of HER things. (This child is not the slightest bit overweight.) The other is getting picked on and having food thrown at him at lunch time for no apparent reason! (I know it’s possible that there is more to the story, I’m just writing what I know.)

Many schools have amped up their anti-bullying campaigns, or at least claim to have, touting ‘zero tolerance’. But this isn’t what actually seems to be happening in our schools. Whose responsibility is it to work on this? I think it is that of us all! Whether your child has been on the bullying or the bullied end of things, or somewhere in between, all of us should be concerned with this. As a mother of a child that will most likely have some special needs when he enters school, this scares the crap out of me!

To make matters worse, we now have cyber-bullying. Kids can now pick on each other, sometimes anonymously, from behind a computer or phone screen. They can share embarrassing photos or untruths with hundreds of people with a click of a button. Again, as adults, we need to be setting the example. Cyber-bullying isn’t okay between adults either but sadly, it is often seen.

Here are a few pointers that I think will go a long way in slowing the bullying epidemic:

1. Don’t raise your kids to be as**oles! Seriously, I know we can only do so much, but that is still A LOT! We need to stop instilling in children that body size, skin color, and the type of shoes a kid has say anything about their worth as a human being. We’re all different, but isn’t that a GOOD thing? Set the example by embracing our differences!
2. Teach your kids to speak up and stand up for themselves. I’m not saying to beat the crap out of someone because they call you fat. But ‘cool’ or not, children should know that it is okay to stand their ground and enlist the help of a teacher or other trusted adult. And, while you don’t want them to be bullies, you also don’t want them to be coddled to the point of being defenseless.
3. Don’t think that your kid can’t be the bully. That angel you see at home may be totally different at school. It doesn’t help the teaching staff if you’re in denial and they’re trying to help. Most of us have been a bully to some degree at some point in our lives. Our schools and teachers need our SUPPORT!
4. Think before you speak. Our children learn from us – what we say, how we act, what we watch on TV, etc. If we’re subjecting them to hostile behavior and demeaning words, we shouldn’t be surprised when they start acting in the same manner. Be the kind of person that you want your child to be.
5. Communicate with your children. Listen to them but also convey to them exactly what you expect of them regarding bullying. Teach them to not only stand up for themselves, but their peers as well.

As my child grows, I hope to help him be a friend to all. I want him to speak to the child that has no friends – the weird one, the quiet one, the goth one. I want him to treat all with respect, even if they don’t reciprocate. You don’t have to like everyone, but you can still coexist. In the end, aren’t we all just trying to raise genuinely good human beings?

Slow Going

“How old is M now?”

“Twenty months.”

“Wow, he must be running all over the place, huh?”

“Nope, not yet.”

“Oh?”

This is a conversation we are all too familiar with these days. Just yesterday we were at a birthday party for a two year old friend and we had that experience at least a few times. You could see the questioning expressions as M army crawled around and struggled to sit while the guest of honor, just four months older, ran circles around him.

A little recap for those who haven’t been following. My son, ‘M’, now twenty months old, was born about three months early at only 26 weeks gestation. I did everything right but it happened still. To add to this, he also was diagnosed with Cystic PVL, a condition that damaged some of the white matter in his brain. Seeing his MRI is super scary, but he’s still just my sweet little boy. And come to think of it, I haven’t even looked at the MRI since the day we got it!

We do pretty well with all of this most days. My husband and I work together to provide in-home physical therapy on a daily basis (really just purposeful intense playing at this age). Our therapist gives us ‘homework’ to do in between visits. M also has countless other appointments and follow-ups. There aren’t enough hours in the day to do what we want with him, but we make the best of it.

We were told when M was just a couple of months old that he may never crawl. If he crawls, he may never walk. And if he walks, he may never be able to run. This was all as he was still hospitalized in the NICU and on many meds and oxygen. Of course, we never know what will happen with any child born. Accidents happen, and things come to light as kids grow and develop.

Enter: frustration. We’re often asked about M’s progress by friends and acquaintances and most don’t know the full story and they don’t understand why he isn’t walking. Truth be told, we really don’t fully understand all of it either, but we do our best. While many parents are elated to talk about their child and the new thing they’ve mastered, we try not to encourage those conversations. Selfish? Maybe, but it has just gotten old to us. Even fairly close friends don’t all know the whole story – we’ve been reluctant to tell for fear M (and our family) will be treated differently. We don’t want him to be defined by a diagnosis that may or may not have much effect on him five years from now.

However, M recently gave us a bright glimmer of hope when he finally started army crawling recently. Up until about July, rolling was his main mode of getting around. Not anymore, though! He is a quick little bugger now! Still, the questions from others get old, and it’s tough to see friends’ kids crawling at half of M’s age. His speech isn’t where it ‘should’ be either, and he doesn’t eat as well as others his age, but we’re confident he’ll get there in his own time.

Despite it all, we know the human brain is quite amazing. By knowing what we’re up against so early on, we hope we will be able to help M ‘remap’ his brain to learn in different ways. (Check out http://www.karenpapemd.com/ for one doctor’s work in this department.) Still, it is slow going. As hurdles are cleared, new ones pop up. We find joy in the little things, and allow ourselves to break down when we have to. It’s not all rainbows and flowers but positivity goes a long way.

From day one of the diagnosis, we have refused to let it break us. We have vowed to get up every day and help M kick Cystic PVL right in the butt! We won’t let it define M or what he can and can’t do. If he wants to be a triathlete, we will support him. If he ends up wheel chair bound, he can still drive and live on his own if he wants. This is 2016 – anything is possible! While it sometimes feels that we’re moving at a snail’s pace, we’re still moving. Never give up!

My Quarter Life Crisis

So I bought a sports car this week. Not just any sports car – a convertible! It isn’t anything new, just an older car that I could pick up for cheap. Somehow I have dubbed this my ‘quarter life crisis.’ My husband is terrified of what my mid-life crisis will bring! I can’t say I’m not a little afraid too! Technically, I guess it’s more of a quarter work life crisis since I’m past 25 but about a quarter of the way through my working life. That is, if my generation ever gets to retire!

This all started about a month ago. I saw this car for sale on my way home from work….every day…for a couple of weeks. I finally asked for some more information and we went to take it for a test drive the same night. I wasn’t sold though – I wanted to look around for some other options. Plus, there was the thought of spending money I shouldn’t be, and really just not needing it for any reason other than ‘fun.’

After we test drove the car and talked about it, I had it stuck in my head that I did, indeed, want need a convertible. About a month later and after looking at hundreds of other cars on Craigslist, it’s now sitting in our driveway.

The first time I seriously considered buying the car must have really sparked something in me. Enter the quarter life crisis. Maybe it was the fact that I haven’t handled motherhood as gracefully as I had hoped. Maybe it was the long NICU journey that is still fresh in our minds. Maybe I felt I needed a reward after just finishing up my associate’s degree at 28. Or maybe it was that I simply wanted it.

A year and a half ago, I was in the hospital and my husband was driving two hours round-trip almost every day to visit me. I continued working and doing schoolwork from my hospital bed. Then we did the same after ‘M’ arrived…for almost four long months. To say it was tiring doesn’t even begin to describe it.

Since then, our life has been endless doctor’s appointments. Between that and working full time, we’re always running in different directions. We wouldn’t trade our sweet boy for anything, but it can be tiring driving all over creation! Why not start doing it in style?

At the end of the day, I’m not sure I really even need to justify my purchase. My husband and I both work very hard for what we have – nothing is handed to us. Could the money have been better spent? Of course! But the good news is that ‘M’ already loves riding around with the top down – it put him right to sleep yesterday. I think this purchase will only lead to more family adventures!

Life is short. Take that nap, eat that cookie, and buy that convertible!

Newborn Envy after NICU

It’s happening. The moms that I blogged about a few weeks ago – they’re having their babies. First of all, I am overjoyed that my friends are having healthy pregnancies, births, and babies. I wouldn’t wish an experience like we had on anyone. I’m so happy for them when I see their Facebook posts that they’re being discharged two or three days after delivery (we waited 112).

But I’d be lying if I didn’t admit I was also green with envy.

One of our friends mentioned coming by this week to meet their new addition. Part of me would love to go and snuggle their brand new bundle of joy, but part of me just doesn’t think I can handle it. If we visit, I’ll hear about how the delivery went off without a hitch, how beautiful it was to hold baby right after birth, and how joyous it was to bring her home for the first time. These things make me overwhelmingly jealous. It’s hard for me to hear these stories without them making me sad of the parts I was robbed of.

Oftentimes after a baby is born, the family is overwhelmed with visitors. We had to skip all of that – first because M stayed in the hospital much longer than I (visitor rules were very strict – for good reason), and then because even when he did come home, we were on extra high alert for germs so visitors were kept to a minimum. There were so many people I wanted to share my precious son with but just couldn’t when I wanted to. Our outings were pretty much restricted to doctor’s appointments because we had so much gear to tow around with M’s oxygen, monitor, and meds.

Then I see the professional photos many new parents have done at the hospital before discharge, proudly posted on Facebook pages by proud new moms and dads. The portraits are beautiful with the wrinkly skin and squishy cheeks. But it also reminds me of why we didn’t get the professional pics done before we left – we didn’t want to pay for pictures with oxygen lines across our precious M’s cheeks. We took plenty of pictures while in NICU but we wanted to wait for the oxygen to be gone before we actually paid for photos. It’s not like we were ashamed of it or anything, we were just ready to be done with that part of his journey.

Bringing baby home is supposed to be a joyous time – introductions to family, friends, and pets. When we finally got our ‘home day’ we were joyful too, but also still overwhelmed with worry. We worried about M’s oxygen and monitors we had to use. We worried about the timing of getting five different medicines into him multiple times each day. I think every new parent worries, but there was a lot more to worry about at that time.

I know this sounds a little strange coming from a preemie mom, but I was also a little upset how big M was when we finally brought him home. From 2 lbs 5 oz, I wouldn’t have believed he’d be pushing nine pounds when we were discharged, but he had fought many struggles that kept him hospitalized longer. He no longer fit into newborn clothing. I know many moms have larger babies, but I don’t feel like we ever really brought a newborn home at all.

I remember a couple of comments made by seemingly well-meaning individuals when M was in NICU – “At least you guys can get some sleep at night!” True, we didn’t wake up every night to a crying baby. Instead we woke up worrying if our baby was okay in the hands of his medical team. We called the NICU late at night and early in the morning to check in. I would have given anything to have been woken up all night by a newborn instead.

Maybe we’ll go visit the families with newborns, who knows! I don’t want to shut friends with new babies out just because I’m jealous. I’ll still love seeing them and I think I can hold it together until we leave. And then my poor husband will listen and pick up the pieces on the way home.

We’re now closing in on a year since M came home (tune in next week for that!) and things like this are slowly getting better. M is cruising around the kitchen in his walker, yelling at the dogs and munching on some Cheerios. Maybe I really didn’t need to have him be a newborn at home, maybe I just needed him to be home.