Enjoying the Season

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!

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

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!

Nine Essential New Baby Items

Nine Essential New Baby Items

I know that lists like this have been done many times but each one is different. I looked at many before my little bundle came along. And, of course, there are many missing items. This is meant to be a list of things people may not think much about. Like many new parents, I’m sure we had a lot of stuff we really didn’t need and we were also lacking a few rather vital ones. (Also, I needed a quick and easy blog this week due to procrastination.) Anyway, here it goes….

  1. Nosefrida – If you still haven’t heard of this, look it up! I’m not sure where we found out about the Nosefrida Snot Sucker, but they are amazing! I’m still using it on my almost two year old when his colds are bad. The idea of sucking your baby’s snot out is gross, I know, but it’s not like it’s going in your mouth. They are much less invasive than the traditional bulbs, and much more effective.
  2. Good burp cloths – This may seem silly but to me, there is a big variance in burp cloth quality. Invest in some good thick ones – you’ll be extra glad you did if your little angel is prone to massive spit ups!
  3. A Boppy, Mombo, or other nursing pillow – Even if you don’t plan to breastfeed, I would still recommend getting one of these pillows. They are good for so many situations! Even my husband would steal my Mombo to hold ‘M’ for long periods of time – it was just more comfortable. Now you can even find pillows with vibration, straps for baby to sit, and other accessories.
  4. Quick-read thermometer – Taking a baby’s temperature under the arm can be painstaking for both of you, and many are hesitant of taking it rectally. Spend the extra money and get a good quality temporal or ear thermometer, you’ll be glad you did!
  5. Mobile or other music player – We found a small mobile to be very helpful with changing time but we used a small music player with no visual stimulus for bedtime. It had both music and white noise settings but seemed to help soothe ‘M’ and wind down for the night.
  6. Video baby monitor – If you have a small enough house or apartment, the video part probably isn’t necessary. But even so, it can be nice to at least go outside of the house and tend the garden or have a little fire while still being able to see your baby in his room. There were many times that I would want to check on him but being able to see him, and even seeing his chest rise and fall, prevented me from going to his room and possibly waking him up.
  7. Baby carrier or wrap – Definitely talk to your friends and read reviews on these. I wish I would have had a good wrap earlier but I didn’t have great luck with the one I bought. However, we ended up with a hand-me-down Baby Bjorn carrier and it is very comfortable, considering the weight you’re toting around. My baby is now 23 pounds but I can still put him in that, though he has almost outgrown it. We also have a nice hiking carrier now that he is a bit bigger. The Kelty Packs are great but pricey. Keep your eyes and ears peeled for a good second hand one to save a few bucks!
  8. A nice stroller/car seat/base combo – I know a car seat is obvious – this is to focus on the combo aspect. We went with a jogging stroller because we wanted something a bit more heavy duty but any combo that meets your needs will do. I wanted to make sure there was enough cargo room below as well. I highly recommend a combo versus mismatched pieces because it makes your life much easier. If you have two vehicles, I also would recommend getting a second base for the car seat. My husband and I each kept a base in our vehicles and that way we didn’t have to worry who was picking up ‘M’ after work, his car seat would click into either vehicle with ease.
  9. High quality camera – I know everyone these days is so used to taking pictures with their phones, but you can’t beat the quality of real photos taken with a good camera. We didn’t buy our good camera until ‘M’ was born, but we had a lower grade digital before that which still did okay. Now that I have my good camera, I can’t imagine being without it. I’m not saying you have to spend thousands of dollars, but splurge on one that is at least a few hundred if you can afford to save for it.

That’s it – that’s all I’ve got for today! I hope you found something new on this list for yourself or for the next baby shower you attend. I know I shop very differently for baby showers now that I’ve had my own! Have a great week everyone!

Two Little Words

Two Little Words

Devastated, yet Hopeful Still

Today I heard the words that I knew in the back of my mind were coming, though it didn’t make it much easier. Two little words…cerebral palsy. My heart sank. I fought back tears as the neurologist explained further, but I kept it together for the most part. We knew this would likely be the result of M’s cystic PVL. Every statistic pointed overwhelmingly to the diagnosis, yet we continued to hope M would be different. And we still hope.

I’ve said it before and it will continue to be my motto. This will not define M, his abilities, or his outcome. He is so much more than CP. I’ve never been great at putting my feelings into words so I continue to push forward. M needs me. He needs me to be okay so I can help him to be okay.

The Next Step

M has been on a baclofen regimen for about three months to try to help loosen his muscles. It’s hard to tell if that was what helped him start army crawling or not, but it does seem like it has helped him at least minimally. He has also been chattier since starting the med.

The next thing we’re discussing now is Botox injection treatment. As with anything, there are possible side effects, but they seem to be few when only doing legs and/or arms (not face and neck). We still have some discussing of this to do, but it seems likely. We don’t want to let the rare chance of serious side effect stop us from potentially helping M to walk. I’m overwhelmed with emotion just thinking about the possibility!

After that, as M gets closer to school age, we may have to explore surgery as well. That I haven’t looked into as much yet….one thing at a time. In the meantime, we will also see if he is a good candidate for special orthotics to hopefully help him walk along with continuing PT and adding some OT and speech.

Silver Linings

On the bright side, the additional diagnosis should open up a few more doors in the way of therapy and services. I’m not sure how we’re going to fit all of the extra therapies in as we both have to work full-time, but we’ll figure it out – we always do. CP is not what many people think it is. It doesn’t always mean intellectual disability, drooling, or being wheel-chair bound. Some people have CP and you wouldn’t even know it, and many are successful with varying degrees of CP.

Also, I can now stop agonizing over the possible diagnosis and just move on with what is. Being proactive and supportive are the best things we can do. We are ready to do everything we can to support M to have the fullest and most mobile life possible. I’m optimistic that we can help him reach full independence but if he can’t, we will do what we need to. We just want him to be able to lead as normal of a life as possible (but what is normal, really?).

Life is full of choices – we make many every single day. I can choose to let this diagnosis push me into seclusion and hide from the world, or I can take it, advocate for my son, and help him to succeed each and every day.

Bullying – Everyone’s Responsibility

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

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!