We started small and without much motivation, managing to make it up to his knees before giving in.

Then we graduated to a full upright standing position that he pulled into from the ground to the coffee table.

Funny enough, the same motivation that sparked his interest to crawl was the same to get him to stand. Candy. (Whatever works, right?)

The thing about my son is most of his strength used for standing, comes from his arms.

That is where he puts most of his weight and definitely is what he uses to pull up since he is paralyzed from the knees down. This is where it gets scary for momma.

He has taken a few slips of the hands or feet and tumbled chin first into the table, or if we got somewhat lucky he just landed softly onto his playmats.

It’s also pretty worrisome now that I have to worry about what is in reach of his little hands. He has never got into anything he wasn’t suppose to, but I know it can and probably will happen one day.

Despite the frightening possibilities that can come from him standing, I have embraced it with open arms.

After all, it was something the doctors’ said he would never be able to do.

It kind of makes you want to send a lovely little video to them and say, “in your face!” (;

Now that we have achieved this awesome step towards walking, we are able to use our Upsee without a hassle.

When we received the Upsee earlier this year, Oliver showed no interest in standing and wasn’t gaining much from being in the contraption.

I can tell such a difference now, from him bearing more of his own weight all the way to initiating his own steps.

With the awesome help from one of Firefly’s therapists, we were even presented with activities that could improve Oliver’s experience and weight bearing in the Upsee.

Such activities included helping mommy put dishes away, having him color on a table, or even going with me outside to get the mail.

What a gift it is now, to hear my little man saying he wants to go outside and walk with his mommy.

When we received Oliver’s diagnosis, as I mentioned above, the doctor’s shared what we might expect and not expect.

Anything physical was not high on the possible list. Sadly, it was all we knew to believe from these medical professionals so we did not expect it.

Although delayed substantially compared to any other child his age, our son did end up hitting these milestones.

Oliver learned how to sit on his own at one year. He learned how to crawl by the time he was 1 1/2 years old.

We are here now, almost three, and are pulling to stand!

We still don’t live to expect anything from our boy, whatever he gives us we will love, but with the awesome therapy and devices out there we are constantly surprised with what he is able to do!

This little boy of mine is reaching new heights with help from all over.

Please do not view my son for everything his disability claims him to be.

For he is everything but. He is fierce in anything he sets his mind to.

Although it may take him some time, he finds a way to do it.

It may look different than how your child does it, but trust that it will get done.

He is intelligent. At just two years old, he is able to hold conversations with kids and adults of all ages.

His frame may be thin but after a few minutes he still gets as tiring to hold as any other toddler!

I see the stares and conversations under their breathes at the playground, stores or restaurants.

I hear the mothers’ warning their children to be extra careful around my boy.

Making the exception when he takes their toy, scolding them to let him play as he pleases.

I will let you know that despite his diagnosis, he has still learned how to share toys and play appropriately. I scold him when he takes toys away, not sharing as he should.

He still has things to do at home, like cleaning up after himself when he has taken every toy out of his toy box.

If he spills, I kindly hand him a napkin and I teach him how to clean the spill up.

My open letter is to simply ask that you do not view nor treat my son any different than you would your own child.

He is capable of mischievous things just the same as any other child, and my goal is to raise him the same as my other children.

Because of this, he has never viewed his disability as something that sets him apart from his siblings or any other children.

Although young, he does not even seem aware that he has a disability. Growing up, it is all he has ever known.

So I ask that you do not view him as fragile, small, incapable, or even angelic.

I do love to brag that he is one awesome kid (who is pretty good at following the rules), but I do know that he loves getting into things he shouldn’t.

Curious little minds can lead to all kinds of discoveries. Just the same as curious minds can lead us down the road of new awareness to things such as his diagnosis.

Instead of shying away from him because he wears braces on his legs or uses a wheelchair for getting around, encourage your little ones or even yourself to come over and inquire about what you are curious about!

If things don’t seem like such a taboo and we learn about them, they might not seem so foreign to our children.

We are the biggest teachers of our children’s life!

We are still on follow up visits for Oliver and his health, as luckily, nothing has changed and we are doing awesome.

We had our spina bifida clinic, in which we discussed the possibility of HKAFOS (orthotic device that goes from the hips-knees-ankles-foot).

With Oliver pulling to stand and taking steps backwards in his gait trainer, he needs something that will direct his legs in the correct direction when learning to walk, as he can not do this on his own.

The problem we have right now is that he is very small for his age and the device might be a little too bulky for his frame to handle.

It is nice to know that this is something we can do sometime in the future, whereas before it was never a possibility.

We made a new move into a home from our previous duplex, and we are so ecstatic about the extra space we now have!

Although Oliver can crawl around everywhere, he does enjoy using his wheelchair from time to time.

Not having such space constricting walls to maneuver around, he is able to get around like a breeze, zipping from room to room.

The one set back we have faced this month, unfortunately, is that we have lost his disability assistance and medicaid.

Oliver was receiving help from social security for his disability which granted him medicaid for all his medical visits and therapy.

Since Aaron and I got married in December, they count both our incomes together and we no longer qualified (as they base it on income first, then disability second). Silly, I know.

Due to our own lack of awareness, we had him added to a waiting list that counts his income instead of the parents last year.

Another set back – the waiting list for this assistance is years. 2-5 years to be an estimate.

I know that I will find a way somehow, and despite the high costs of visits and therapy, he needs them.

It is so sad that I have heard from many parents that this was the reason they got divorced, or never got married.

Despite the sad news, Oliver has had a great month.

He got to enjoy his very first WWE (wrestling) match! Every Monday and Tuesday he sits with his dad and brothers to watch the matches on tv.

Mommy surprised them for Christmas with tickets to a match, and the time finally came for them to go and experience it in person. They were all smiles filled with joy!

We are so blessed and very much thankful that we get to report another month where nothing major has affected us health wise, and no major changes in Oliver’s health.

Instead we are making major strides forward with physical abilities and making memories each day given!

Being a mother to three boys is tiring and challenging. Lol!

I love each and every day of it though.

My nine year old (step-son but just as much my own as my other two boys) keeps me busy with sports and every-trying life lessons, my two year old keeps me on my toes with therapy and never ending conversations, and lastly my six month old just plain keeps me busy.

Feedings every three hours still, and his horrible, mean, aching teething gums.

Since last update, I am now able to call Aaron my husband. Woohooo! That sounds just lovely.

We have continued life just the same as before we were married, trying a little harder this time to make date nights happen though.

Once again, we are finding ourselves in the middle of a move. Relocation by choice.

Our family has also found ourselves to be the new home to a little kitten we chose to adopt.

We tried once before by fostering a puppy, and realized Oliver just was too afraid of the peppy little thing and would not adjust very well.

With the kitten, we have seen an amazing bond between Oliver and, “Brock Lesnar”.

You see, when you ask a two year old what he would like to name the new kitten, be prepared for anything.. and I mean anything!

My little WWE superstar blurted out the one name that came to his mind, and has stuck with it ever since. We like to call her KeeKee for short (don’t tell him that though).

To our surprise, Oliver took to the kitten like Mickey Mouse and Pluto. Best friends from the get go!

Although he catches himself in the midst of a few battle wounds (from playing around and accidental scratches) he gets right back to tossing around her feather toy and watching her chase it.

Other than another move and the new addition (yet again), things have been very chill around our house.

We are still on routine check ups for Oliver and nothing new has sprung up healthwise (knock on wood).

Therapy is still every Tuesday and Thursday for us, and Oliver has come so far already in progression towards possibly walking one day.

We are always hopeful, but never pushy nor relying.

I myself, have found more work (from home praise the Lord!) and am enjoying the opportunity to once again being able to help provide some for our family.

Plus being able to, ‘adult’, and make money is always good.

Just not always for the checkbook and spending. (Yikes!)

It is always a good thing being able to update family and friends with nothing but a few minor changes and see that my life has once again found the path of being nice, quiet, and boring for a little while.

I know it is not always going to be like this, so if you don’t mind me, I’d like to enjoy every minute of it while I can.

The video showed a young man taking in his used car to get fixed and leaving, to his surprise, with a brand new Ford Explorer.

You see though, there was one more thing…

The Ford Explorer was upgraded and adjusted to allow this young man to access it with his wheelchair.

To be able to drive it like any one of us would.

Through a comment I left, praising the video and thanking them for sharing it, I found myself with a new friend!

Two actually. You see, like my son, this young man (whom I will proudly introduce in just a second) has spina bifida.

As a refresher, spina bifida is a birth defect in which the baby’s spinal cord fails to fully develop.

Through my comment, in which I shared a photo of my son in his very own wheelchair, I met Mitch Bohn.

Mitch is a communications major, who loves to watch his brother play baseball. He himself is also a huge sport and movie buff!

The automotive business that blessed Mitch with this awesome new car is known as Christian Brother’s automotive.

The very first time Mitch visited Christian Brothers was for his 1997 Chevy Lumina, which would not start.

He had to get his car towed to the automotive shop, where they informed him that his car was a fire waiting to happen!

When he realized the new Ford was a gift for him, a gift in which he never grew up to expect, he was so overwhelmed with emotions.

Since receiving the new car, it has allowed Mitch freedom knowing he did not have to rely on his mother or father to get in and out of a vehicle with his wheelchair.

I asked Mitch if he was able to give any gift, what would it be and why.

He said, “I would give someone the gift of kindness. You never truly know how much just a simple smile or hi can make someone’s day.”

As for my last question, I wanted to know if there was one piece of advice he would like to share with kids (such as my son).

In his own words,

“My one piece of advice is sort of two things actually, but they tie together.

Don’t under any circumstances let someone tell you, “No”, to doing what you want.

If you want to play basketball, do it. If you want to climb a mountain, do it.

Just because you have a disability, that does not mean you cannot dream big. So with that, dream big.”

I just welcomed my second son into the world in July.

Not exactly new to the game, but regardless, the advice came flowing in right on schedule. Most of the advice I have received, usually regarding how to install a car seat appropriately or the best bottle on the market, have been great!

I have always been open and quite welcome to all the tips, but I must admit that one has hit a nerve within me.

Breastfeeding.

From breastfeeding awareness month to women trying to normalize it, we have all seen the rise in breastfeeding going public.

As I approach writing this blog with caution, I do want to state that I am in no way against breastfeeding.

In fact, I breastfed my first son and currently breastfeed my second.

Well, to be honest, I pump. Both being premature, we never had the opportunity to latch on immediately and start supply.

Because of this, I had to get into the motion of pumping every three hours until my supply came in, and even then I had to feed it to them via bottle.

This was to allow the doctors and nurses see how much they were actually consuming.

With my first, I just never had the support from lactation consultants to keep trying to latch and breastfeed.

Eventually my supply died off and we went to formula before he was even six months of age.

Now with my second, we have had the support and been successful (most days) with latching. Unfortunately this stubborn guy preferred the nipple from a bottle and turned his head to actual breastfeeding.

So again, I found myself pumping every three hours so that my supply didn’t fall off the face of the earth.

But we are here, again.

Supply running so low that I am unable to make enough for his feedings, and am having to turn to formula.

Now the part that hits the nerves… When I discuss this with friends, family, or even medical staff and am returned with disappointment. First they try to approach me with tips on how to, “up”, my supply or better ways to latch.

Having tried a nipple shield, Fenugreek, brewers yeast and lactation cookies, I was no newbie to these tips.

They all worked temporarily, but a pump will not fully empty a breast like a baby will.

Then they approached me like I did not want to try and give my son the best thing out there for him.

Before, breastfeeding was not something you saw in public or even heard mother’s talking about. Now that society is trying to normalize it, sometimes it has become to the point that people are shoving it down one another’s throat.

I was shamed and looked down on, because I was turning to formula instead of trying harder to produce breastmilk for my child.

As a mother I had already known how important breastmilk was for my boys, so needless to say I was already bringing down the hammer upon myself for feeling like a failure.

Having other people do it also was just the last inch needed to strike that nerve.

Although I have ranted much of this blog, I hope that one can read this and understand that although breastfeeding is amazing in all its benefits, sometimes it just isn’t for every mother.

Before questioning a mother who may be using formula instead of breastmilk, understand that she may have given her very all into trying for her baby and just came up a little short.

Although much quieter than my first pregnancy, this time around has had its share of stress.

With Oliver, we pretty much went about the whole thing as any other person would.

Take naps when you can. Send the husband out for cravings. Whine about the weight gain, etc. 

Up until we received his diagnosis, we really had no other indication that things would take a turn in the opposite direction of ‘simple’.

Hospital bed rest at 24 weeks, making it just a day over 30 weeks to deliver Oliver in all his three pound glory.

Besides his list of diagnoses that could have contributed to my body wanting to and successfully ejecting him out early, I had my own – Incompetent cervix.

The one amount of space that has a very important job of keeping my babies in until full term, was incompetent of doing just that.

This of course put me at risk for all future deliveries, of delivering prematurely.

Now, normally the approach for this when pregnant again, would be to place a cerclage in to stitch the cervix closed and prevent it from dilating prematurely. Normally.

But not all doctors follow it, and instead do a, ‘watch and see’, approach.

Beginning at 16 weeks of pregnancy, they usually see you biweekly for cervical length checks and in my case I had to self-administer progesterone injections once a week. Ouch!

If you fell below a certain measurement, and were before 24 weeks gestation, only then would they perform surgery for a cerclage.

I never fell below the range, and thus spent most of my pregnancy stressing out about every little twinge and cramp.

We always just assumed because Oliver came early and I had a cervix incompetent of doing its’ job, that this baby would come early as well.

Thirty-three weeks into my pregnancy, I can happily say that we are still baking this little bun in the oven!

Besides all the worries from the pregnancy, Oliver is due in September for his sixth surgery.

Another tenotomy release of his right Achilles heel.

Even with recurrent casting and AFO braces, his right foot has managed to tighten itself back up not allowing him to step flat properly.

Instead, because his feet were clubbed, when he steps on his right foot he steps on top on it rather than flat on the heel. It just sort of folds underneath.

It is a minor surgery with only local anesthetic, so we hope to be in and out fairly quickly.

Recovery is the only problem.

Casting Oliver when he was young was no problem. But this kiddo is two years old now, and about as rambunctious as a chimpanzee.

We hope to update soon after September with a successful surgery and delivery of Aaden and Oliver’s little brother!

We have just added a wheelchair to my son Oliver’s list of equipment.

Although it is one of the smallest in the line of wheelchairs, it can still prove to be quite bulky.

Seeing that we need both wheels, brakes and handles to push him, and seatbelts, there isn’t much we can do much about it.

But making it look a little cooler is doable.

It is pretty awesome that these chairs can now come in a selection of colors that appeal to the kiddos, so we decided to go with neon green.

Because Oliver is still working on trunk control, he has two seat belts – one that goes across the hips for obvious placement, and one big black one across the chest.

Anytime he has a nice shirt on, it is all distracted by the thick, dark seat belt.

Recently in the Zoo gift shop, I saw the cutest seat belt cover in the design of a green alligator. Granted, this cover was made for the seat belt that goes across the chest in the vehicle, it served just the same purpose going over Oliver’s chest belt.

Behold! The unsightly belt that covered most of his chest, was now a scary, yet soft to touch green alligator to match his wheelchair!

The next life hack I would like to brag about, would be shoes for his afos (ankle foot orthotic shoes).

You can indeed find great shoes on sites like Stride Rite that come in extra wide to fit over the foot braces, but the pickings get slimmer when you go from wide to extra wide.

Being that Oliver is not a walker, and still learning to stand with the help of his squiggles stander, we turn to shoes more for the grip they get on the floor.

Oliver’s AFO braces are plastic and slip and slide on our concrete floor.

(We did get lucky with the design and chose cute, yellow braces with elephants on them, so spending $40 on a pair of shoes he would surely outgrow before being able to walk in them, was not so appealing.)

This is when I turned to the community and found a common life hack; Wal-Mart!

Or any thrifty shop that would sell toddler shoes for under $15.

I had to go a size up in the shoe, but we found some pretty styling neon green and blue shoes that had a Velcro strap.

With the braces, the only problem was I could not get the tongue open wide enough to fit the thing in.

That is when I took to cutting off the stretchy, ‘fake’, shoelaces they had holding the tongue back, and taking out the sole of the shoe – this made it easy to slip the brace in and made the shoe deeper for the brace to fit in. Voila!

I now had my $6 shoes for Oliver to wear while learning to stand.

Life can be hard enough keeping track of all the equipment my son uses, so why not make it look good!

If you have any hacks you’d like to share, please comment below!

We had no doubt that Oliver would take to using it right away, since we had so much practice in his bumbo wheelchair.

A couple pounds heavier, he was soon using it like a pro.

Aaron and I just had to face our fear of bringing it out in public for the first time.

Now don’t get me wrong, we were not ashamed, embarrassed or anything of that nature.

We did have this little flight of excitement with the thought of him being able to finally explore his surroundings out in public and not just be pushed around in the stroller.

We saw what an improvement it made just being able to roam around the house in the little bumbo wheelchair, we could only imagine what taking him to the store or zoo would be like for him!

What we did not expect, nor were we quite ready for, were the stares.

The prolonged looks, whispering under one’s breath, and the questions.

Sure, we got the stares before when Oliver had to go through serial leg casting of both legs… but we just figured they thought he broke his legs and never really got any questions, but rather assumptions from anyone who approached us.

Once he finished the casting, Oliver just appeared like any other two year old in a stroller.

We were never anywhere long enough for anyone to realize he was not walking like the rest his age, or ask why.

So once he got his wheelchair, it was kind of like BAM! Look at me.. I am in a wheelchair. So, right away you know that I cannot walk for whatever reason. (Which is not always the case, as some use it for long distances even though they can indeed walk short distances, etc.)

Not only is it visually inviting one to ask questions, but most people have actually never seen a wheelchair come in such a small size.

I know I had no clue previous to Oliver’s diagnosis, that equipment like this and in this size existed.

After our first two outings with Oliver and the new chair, Aaron and I found ourselves uncomfortable and like the odd balls out.

I could at least be happy knowing that Oliver was still too young and oblivious to the fact that everyone was staring at him and the chair more so than how cute and awesome he is in it.

I knew I had to do something… I knew that as I was before, all these people were staring and asking questions for the simple fact that they were curious.

They did not know, therefore went out in whatever fashion to find out for themselves or just flat out stare.

So I decided to take to social media for help!

The city I live in has a group on Facebook for mothers to join and post questions they may have, sales going on, advice, or anything of that nature.

I knew it was the perfect platform to take in educating the ever curious.

In a short and sweet post, I introduced my son Oliver (pictured in his new chair) and basically let everyone know they would undoubtedly be seeing us around town at some point or another.

I shared why he used the chair and that this chair was no binding deal, but in fact a mode of transportation to allow him to explore and be independent.

I invited anyone to ask questions and was surprised by the overwhelming response we received.

So many blessings and welcoming greets.

Even pictures and stories of other children in the community who had their very own chairs!

With one little post, one little share, I was able to bring everyone just a little bit closer into understanding something just a little bit different.