Thankful

As the year comes closer and closer to an end, I can’t help but look back and reflect.

I know how corny that sounds, but for everything my family and I have gone through this year, it is a given.

I have yet to blog about it, but I actually finally broke the four year streak of being a stay at home mom and started working outside the home.

Before working, I never knew how it would be possible.

With Oliver’s therapy appointments, doctors appointments, and just all the other miscellaneous activities I did with him and the other kiddos, the idea of adding an 8 hour block to my schedule each day was impossible.

Or so it seemed.

But here I am, almost 2 months in and I can say it IS possible!

Of course deep down I always knew it would be, as I am not the first mom of a special needs child to go to work. Lol!

It was just the right time for me to be able to do it.

So I made the leap.

To add the cherry on top, I get to work in the field I am going to school for and have been blessed with an amazing crew and supervisor to work with.

People who understand that we are more than a body set out to do their duties for their shift and nothing more.

That we are real humans, with lives and unique ones that require a little more or a little less than others.

But don’t get me wrong, it sure did not start off easy.

Within my first weeks of working, I had Oliver come home multiple times with the stomach bug and RSV, the youngest Theodore come home with strep, and my oldest Aaden come home from injury as well as his round in the stomach flu.

Without my husband and a few other lovely ladies that have helped me tremendously, I don’t know how I would’ve got through it all.

So as I reflect on all that has ended, begun and happened this year, I am oh so grateful for it all!

Life has a funny way of teaching you lessons, when to slow down, when changes need to be made, and even when new paths need to be taken.

Most of us just forget to take the time and reflect on it all.

Not just take a bad day for being a bad day, but how we could learn from it.

How we can appreciate so much more, the good things in our lives.

SO if you are reading this, I am grateful for you.

Please Don’t Park There

Dear Fellow Driver,

Those few parking spaces at the front of businesses and buildings you see, with the blue marked lines and handicaps signs, are more than just a “quick” stop.

You may be in a hurry and thought to yourself, “it’ll just be real quick and then I’m gone”.

There may not have been a handicap sign and you failed to see the symbol on the street.

You may have even parked a little wide and are parked over the marked lines for the handicap spots.

It usually doesn’t matter the reason, and I am sure I have heard them all.

But if you do not have the appropriate license plate or placards for using such a space, please do NOT park in the designated areas.

My son is young, and actually does not realize there are special spots like these made for him, but I do.

I am the parents that has to cross her fingers hoping that a spot is available for us when we need it.

I am the parent that has to see these parking spots abused by people who feel more entitled than those with the legal right to them.

Getting my son in and out of the car and in to his wheelchair is no easy task.

It will only get harder and he gets older and heavier to carry.

The lines are marked to allow people like myself and others, the appropriate amount of space needed for ramps and such to extend allowing us or the person to be able to get in to their own car with an accessible device.

Of course, I am only speaking on my behalf and those that I know with wheelchairs as accessible modes of transportation.

There are so many other reasons people need these parking spaces.

So please understand that my son’s needs are so much more important that what is convenient for the moment.

Please understand that if I approach you, it is only with intent to better educate you on the purpose of a handicap spot and why it is so important for families like my own.

I do this, with hope, so that my son will not have to deal with this on a daily basis as he gets older and more independent.

With hope, that he can see people who respect the true purpose of these parking spaces and uses them accordingly.

So next time you are in a hurry, please remember that my son’s needs are not to be used for your convenience.

That Time of Year

Every year, around Thanksgiving time, we attend a yearly camp located near us. Camp John Marc.

It is such a wonderful, inclusive, and fun camp for the whole family to attend.

They always have the Spina bifida camp around the same time, and we were able to attend this year.

Oliver is four years old now, and just at the right age that he is able to communicate with people as well as access his wheelchair himself and independently go where he pleases.

My husband and I were very excited to see his reaction this year as he met and hung out with all the other kiddos and their own mobility devices.

Having attended before, we know that majority of the mobility devices are wheelchairs so we knew to look out for the races, crashes, and excitement!

“Mommy, look at all these kids in wheelchairs too!”

Words I still remember, even a month after camp has come and gone.

He was so very excited to finally not be the only one on wheels.

Oliver zipped around with the other children, each one finding their voice and greeting each other like little kids do.

I can’t voice enough how much I love attending this camp with my family.

You are able to choose activities you want to attend during the duration of your time, all of which are wheelchair accessible.

From fishing off the dock to weird science, there is never a hassle in having to make sure Oliver can participate.

But beyond the activities and even the good camp food (lol!), it means so much more to us.

I know that I have friends and a great support team that can listen to me cry about my problems or frustrations and even offer me supplies if they have them and I am in need.

Mothers are able to get together and share advice on things that may or may not work better for you and your child.

When a family receives a diagnosis for their child, parents tend to isolate themself and feel like no one out there understands.

Camps like Camp John Marc, find ways to bring us all together in one place so that we can finally see that we are not alone.

In fact we are just apart of a much larger group that have so much in common.

We love, we fear, we try so very hard for these little people we call our children.

I do hope that you look in to camps around your area, or even a little farther (because I guarantee its worth the travel) so you can feel the same way I do!

I give so much thanks again, to Camp John Marc and all they do for families like mine.

Diagnosis Day

The day they take their first steps, their first words, first day of school… There are an abundance of days that just stick in our memory for us to cherish for years and years.

What about those days though, that we wish we could shove far back in our minds that we don’t ever have to relive or remember them again? As awful as it sounds, I have one of those days.

Our diagnosis day. Granted, there are families out there that would give anything for a diagnosis, an answer. But for us, it was a day I will never forget.

It all started when our second trimester blood screening came back abnormal for our alpha feta protein levels. This suggested the possibility of a neural tube defect, spina bifida to be specific. Right around the time that we found out we were having a boy, we get the shocking news that our son may come with a lifelong diagnosis.

A diagnosis that left his lower spine open, failing to fully fuse together in the first month of foetal development. A diagnosis that meant his spine and all of it precious nerves were open to physical trauma since those very first moments of pregnancy.

Of course, having our son here now with us four years of age, all this sorrow we felt seems insane. But it is the truth.

No one receives a diagnosis for their unborn child and leaves that doctor’s office to celebrate. They leave in tears, fear, and this unknowingness of what the future holds. They hear the textbook definition of this ‘said diagnosis’ and are always given the worst-case scenario so that the doctors cover all possibilities.

Of course, this is not to go on and say that all doctors won’t give hope, because we found ourselves blessed with a high-risk doctor who pulled out his phone and showed us pictures of other children with the same diagnosis smiling and living life.

Our diagnosis day was just a very trying time in our lives, unable to imagine how we’d care for this medically fragile child when we knew not even what it was like to have a new born yet.

But with grief, came support.

From other families who went through what we were currently going through, they reached out and showed us actual physical proof that although it would be hard, it was darn worth it!  Now, my child is amongst the smiling pictures that are shown to future parents when they need that light, that hope.

Oliver Does Pre-K

We are now 2 months in to pre-k for Oliver, and although we still fight the early morning rises, he loves it! Two weeks in and he stopped crying during morning drop offs, which was a huge step. I no longer spend my days wondering what would happen if he gets lost, wakes up from nap and misses me, or even worrying about him having lunch without me.

Every day that I get to pick him up from school, I am excited to hear about what he learned that day.

Yesterday he told me he learned the letter ‘F’. He went on to show me how he pronounces the letter and what word would go with it. “Ffff, Fffff people!”.  Not exactly the way it works, but it was cute none the less. So far I have heard him sing the days of the week, and even the months of the year! It truly amazes me how quickly they can catch on and learn new things.

Our school just had a new playground installed and what a blessing, we got a wheelchair accessible swing! Oliver has yet to use it (he is still getting over the fear of being the first one), but we love that this was added not only for our son but for future children to come. I would also like to share that I am so proud of how the staff and teachers at Oliver’s school have gone above and beyond to reach out to me in times of need, when they had questions, or even suggestions for different things.

I remember back in June, my husband Aaron and I were so scared to “release” Oliver in to the real world.

We were frightened that kids would not understand his disability, or only see him for that and be scared to interact with him. Above all else, we were nervous that Oliver would not adapt to being away from home for such a long period of time, five days a week. Sounds like most parents, right?

Well, like most parents we are here now with a child who has an abundance of friends, who can’t wait to leave us in the morning, and who can’t wait to come home and see us in the afternoon. Going to school has really helped my little Oliver blossom and open up in to this friendly, bubbly kid.

I am so proud that he gets to teach and bring awareness to this generation of children and help them grow in to sharing kindness with children of all ages and abilities.

Label Me: Lonely

Isn’t it amazing how many people pop out of the shadows when you first announce a pregnancy? The joy and excitement both from them and yourself is overwhelming.

They follow you through your first ultrasound, finding out the gender, even up until your due date to catch those first shots of your newborn!

After all, with social media these days it is easy to share with family and friends and follow along with anything! Unfortunately you also lose a few friends and family along the way. Maybe not intentionally, but those friends you had since high school who may not be ready for kids yet and are still enjoying their care free evenings and weekends. They don’t do it to be mean or intentional.

You all just suddenly have different priorities and responsibilities and grow apart. With the new mom label going, let’s say we add one more and make you a new mom to a newborn with a diagnosis or disability.

With the wave of whatever wand the universe has, you are now friends to even less than you imagined.

Maybe they are scared to say the wrong thing, or ask the wrong questions. Maybe their children grew on to learn to crawl, walk, or even talk and your child has not. It could be a number of reasons, but somewhere along the way they could not relate to what you were going through, felt guilt, felt nervous and slowly lost contact.

Nobody realizes how hard it is to make friends once you’re out of high school and onto having families, getting married, and doing “grown-up” things.

But it is there.

I guarantee it hits most of us stay at home moms the hardest. It hits us stay at home mothers to newborns with a diagnosis or disability like a brick wall.  And although I now have a new plethora of people I call friends, it took many days of loneliness and reaching out to get here. I just had to realize I was reaching out in the wrong places.

Where I felt singled out and like the only rare species of lonely moms on the planet, there were more. More moms like me, who were willing to share their friendship and even build friendships amongst our children (disability or not). So although most days I still label myself as the lonely stay at home mom, I realize I am not the only one and have built a great group of friends off of that.

Cheesy, I know. (;

My Dear Oliver

I write this letter to you, with hopes that these words will someday lift you up.

I hope to look back and find hope in my own words, even when I feel down and defeated.

You are now a whopping four years old, and curious as ever.

You are always asking your daddy and me 100 questions.

Your inquisitive mind is always running 100 miles a minute.

And you know what?

I absolutely love it.

I love when you try to teach your younger brother, Theodore, right from wrong.

I love when you tattle on your older brother, Aaden.

But lately, you have started asking questions on why you can’t walk like your brothers and friends.

You have asked, “If I eat ALL my food, will I walk like Theodore?”

You have even shared your fears about starting Pre-K and not being able to play like the other kids do.

My sweet baby boy, if I could only steals these thoughts and questions from you.

I knew these questions would come one day.

I knew you would one day notice that not every child like you has a wheelchair.

I even knew that you would notice how much harder it is for you to try walking, compared to your younger brother.

What I did not know, was how to answer these questions and inquiries.

There was never a playbook for mommy to turn to when I was stuck.

Do I be completely honest with you?

Or do I bend the truth a little, because I want you to still be hopeful and have faith?

To this day, I still don’t have all the right answers.

I don’t think I ever will.

But I take it step by step.

Day by day. Question by…question.

I tell you that even tho you may not walk like the other kids and your brothers, none of them have a cool, super fast wheelchair like you!

I tell you that God made you a little different and because of your scar on your back from Spina Bifida, you have to work just a little bit harder to stand tall or walk.

I instill hope that your friends and brothers will all see the good in you, and won’t leave you behind.

And even though somedays I feel like I am doing it all wrong, you give me little hints that maybe I am doing it right.

Like when I walked in on you explaining to a young child that your wheelchair was to help you so you wouldn’t scrape your knees all up on the floor.

So I encourage you to keep pushing, keep asking, keep educating.

We are in this together and we will both learn so many new things along the way!

Standing Tall

Ever since my son Oliver showed interest in learning how to walk and an understanding that it would take a lot more effort and tries to accomplish it, I wanted more for him.

I wanted the best of the best bracing, therapeutic equipment, and anything I could assemble and DIY at home for him to be able to work at this dream.

We have always had AFO bracing for him, which cover the ankles and feet.

They allow extra support where he is weak, ultimately preventing his ankles from giving out and keeping his feet upright and straight when standing.

Because he was born with club feet and hip dysplasia, without bracing his legs curve in at a slight angle.

He would almost be standing on the top of his feet, without the help of these orthotics.

Due to his paralysis, he also experiences gait problems.

Oliver has the most amazing upper body strength you have ever seen in a four year old, but he seems to almost, “fold in half”, at the torso area.

Due to this, I have always pushed our doctors and therapist to look into HKAFO bracing, or anything similar to them.

For this type of bracing, it covers the hips, knees, ankles and feet just like his AFO braces would do.

The awesome thing about these tho, is that they keep his torso upright when walking not allowing him to do this folding in half.

It allows him to stand tall!

With Oliver now hitting four years of age, we are hearing more from him about being able to walk and stand like his siblings.

After months and months of fighting and finally waiting for them to arrive, we have received the bracing equipment!

They are bulky, new, and scary to Oliver, but with time and practice he has warmed up to them.

Nothing could hold back his smile and giggles when he saw himself next to his younger brother Theodore, standing a couple inches over his head.

He finally felt what it was like to stand up, on his own even!

My sweet boy wanted to just keep the braces on and stand while doing even the simplest things like watching TV.

All those months of research and pushing paid off just to see him smile.

It was such a weird feeling and sight to see my son stand on his own, and I very much look forward to see him turn that in to walking on his own!

First Day Jitters

How many moms out there currently have the first day of school jitters?

I know I sure do!

My first born, Oliver, starts Pre-K at the end of August and the boy has never even been in daycare.

When we first started doing therapy sessions, they would take him back without me, so they could have a one on one session without distraction.

The first days and weeks were hard.

As soon as he caught wind of what was about to happen, he would start crying for me and not want to go.

After all, I have stayed at home with him ever since he was born.

There were a couple times when I would give in and go back with him, but he would just cry for me to hold him and ultimately not get his session done. Luckily, we progressed and moved past this stage.

Now here we are, weeks away from the first day of school, and I can’t help but think of how he will react.

Will the first day be full of crying?

Will he come back excited for the next day or dread it and beg not to go back?

Time will only tell, and I know I am not the first mother or father in these shoes.

Thankfully, we fell in the hands of a school who will implement a health plan for my son.

We have nurses who are eager to learn how to cath my son, so that he is comfortable all day.

We even have cafeteria staff, taking in to account that he has certain allergy risks that need to be avoided.

They may seem small or even monumental to some, but small steps like this get us up the ladder for a successful school year.

A successful introduction in to the real world.

I even took advantage of social media, and reached out to a local mom’s group to introduce my son and encourage them to show their children and let me know if they had questions regarding his means of transportation (wheelchair) or anything else.

I wanted to open the door for communication, and break down the barrier we all may feel sometimes when we’re told, “not to stare”, or to, “mind our own business”.

I do not know when I will stop feeling so nervous about Oliver being out in public school, but I hope he can make the best of friends and memories while doing so.