Oliver, my sweet first born, came into this world early and with a diagnosis of spina bifida.

It’s not that we saw ourselves as risk takers to the mere three percent increased risk, but rather we chose not to fear his or another diagnosis for our future children.

Twenty-two weeks now, and as you can imagine we have already gone through the motions of high risk testing, blood work, and ultrasounds.

Up until now, I guess I spent so much time preparing myself for another phone call and hearing the voice on the other end read off another diagnosis, that I failed to prepare myself for that same voice telling me that all tests came back showing no sign of spina bifida.

First, it was our blood work that came back.

The good ol’ second trimester screening that first clued us into Oliver’s neural tube defect. It had shown that my AFP (alpha feta protein) levels were merely above the normal range.

Tapping into other women’s opinions on a quad-testing board, I was somewhat comforted by the responses claiming their levels were much higher and they ended up giving birth to healthy babies.

Obviously, although healthy in my eyes, that was not the case for me and Oliver was born with spina bifida myelomeningocele.

Back to Theodore (which is what Aaron and I have decided to name him), my blood work came back with everything in normal range.

It was a good sign but these tests are just screenings, not finals says. I was in the middle of my 17th week, when I went in for a routine ultrasound. Or so I thought.

I ended up having my anatomy scan, without any time to prepare myself for what I may or may not hear from the doctor.

With Oliver, we had countless ultrasounds. One every week just about!

I actually have a baby book purely designated to his ultrasound images and scans. Once we knew what to look for, it wasn’t hard seeing what was clearly there.

An open sac where his spine failed to fuse together and close on its own. Even the misshapen skull and fluid on his brain were obvious to us now.

So here I was, during Theodore’s scan, trying to play doctor and look out for all the obvious signs of this defect.

When it was confirmed that indeed nothing presented itself as, “out of the ordinary”, and seemed to be going as it should, I felt this pain. Almost like an emptiness.

I had pictured a concerned tech calling in the doctor, the doctor grabbing tissues again as he explained to me the findings. I had imagined feeling prepared for another baby with spina bifida.

Not a baby boy with no diagnosis.

Not having an uneventful birth, or doctor visits few and far between, or even a child who had no doubt that he would walk in his near future. I was not prepared for the guilt I felt, knowing that Oliver might one day feel different than his siblings.

Although it is still something I am learning to cope with, as each day passes, I can only do my best as a mother to instill in my children that they are all made with different qualities that make them awesome!

Hormones are never good in an equation like this, but for those who have already had children after having a child with a diagnosis, I would love to hear how got through it all.

How did you manage to rise above the negative feelings or quilt?

What is it like now?

In the beginning, we were pretty new to the idea of getting therapy, along with figuring out exactly what Oliver could tolerate and what he needed work on.

He started seeing therapists at only five months of age, and being born ten weeks early you can imagine there was not much we could do.

After all, the little guy was still learning to be in the outside world and gain some weight!

Many visits felt just as stated…visits.

We would sit, watch Oliver try and play with toys and just talk. It was nice having the company but I wasn’t in full understanding at the time of how this was or how it was supposed to help us.

I had no clue that watching him explore a toy on his own, learn to hold it in his hand or even stick it in his mouth for exploration was huge! I just figured this was all stuff a baby “should” eventually learn how to do.

Why did I need someone in my house observing him do it and take notes?

We would be back at it next week and I soon found myself feeling guilty.

Guilty because at the end of every session I would get a little task, homework you could say, to work on with Oliver until the next time we met.

If we had little or no improvement, I would get the feeling of guilt and failure. Like it was my fault he could not accomplish what she had wanted us to do in time.

Now I do want to state that never, ever have our therapists made us feel like failures. There has never been negative remarks on what we have or have not been able to do.

This was just me not knowing how to cope with everything so new.

It was not until I started asking questions on what we could do better at home, or what gadgets would work better in certain situations with learning; that I learned how to make the most out of our sessions.

I did not just attend each therapy session expecting them do to their work and be done.

I now came to each appointment with a list of questions and toys I would find here and there ready for their opinions of whether it would be a good fit or not.

We were now prepared. One of the things Oliver had the most struggle with, was upper body control. Before we came across Firefly and their amazing products, we found a family willing to donate this contraption called the Bumbo wheelchair.

It was not something you found in a store. It was not something recommended by the therapists.

By asking questions during therapy, we knew what exactly Oliver needed to work on, what he enjoyed doing, and what items might help progress his strength.

So we put two and two together; Oliver loved exploring his surroundings but had no means to get around just yet, and chairs like the bumbo helped support him upright while building strength.

Shockingly enough, we found someone who had taken the bumbo chair, put it on a platform, and attached two stroller wheels to the side making a wheelchair!

Too small to fit in most chairs, my little man was now sitting on his own and slowly realizing how the wheels work and could get him from point A to point B.

For our family, we have made the most out of our therapy sessions by being prepared and asking lots of questions.

Two years in, Oliver now has his big boy wheelchair that he uses like a pro and our therapist is still amazed with this bumbo wheelchair!

I do recall reading the title of a blog and about how they did not want their child to be the purpose of some feel good, raise to fame ordeal.

It stated how they wanted their child to be treated like any other kid would be.

While I can agree on some extent to this, I do not agree to all of it. I will tell you why…

Although I want nothing more than Oliver to be treated with the same respect and courtesy as one would to any other child, he is inevitably different than most kids.

There is no denying that although I would love for him to go out and about playing with kids as kids do, I still need those same children running about to take precaution when he moves about.

I still need them to understand that he does have different ways of getting around and maybe going out and climbing trees is not something he can do on his own.

With social media being so popular and kids and adults getting famous by videos on YouTube and such, it is easy to question ones’ intention when posting something.

Like asking your daughter who may have a diagnosis to the prom.

I always catch myself questioning whether the countless people we come across who so adoringly coo over how cute Oliver is, would still be doing the same if he wasn’t in braces or a wheelchair.

But I have realized that I do not want to always have to question things day in and day out.

I would love to trust that one day, whether it made it viral or not, that a girl or even my own boy will ask another out to prom and it not be questioned.

I don’t want Oliver to ask himself whether they said yes because they, “felt bad”, or if they truly thought he was a cutie – which he is!

I want Oliver to experience love, happiness, and all the normal heartaches we all went through because we learn from that.

I do however want people to understand that he is different in his own unique way and that is what makes him so special to us all!

We sometimes associate the word special with being bad and different, because we always see it linked to “special needs”.

But to me, it is one of that many attributes Oliver carries.

He loves to hold my hand whenever we are laying down together, and that is special to me.

He can get from point A to point B in his wheelchair just as fast as his older brother Aaden can running, and that is special to me.

Oliver has grown up with spina bifida not knowing that it isn’t, “not normal”, and he learns and lives because he does not know any different.

I do not want him to ever have to question why he is so special to me or others.

Some were wondering how things would be since he and I are getting married in December and baby is due September.

Others were afraid to offend but mentioned being concerned since our pregnancy was quite eventful and we had Oliver diagnosed with spina bifida.

I have always been open with my family and friends on social media.

Especially with my steps towards bettering my health and finding the closest thing I could to an answer as to how we had a child with spina bifida.

No one can rule out genetics, environmental or other things, but one thing we came across was that my body didn’t absorb folic acid like it should.

Not a definitive answer, but I was definitely on the right track to taking the right vitamins and supplements the second time around.

Aaron and I both knew regardless, no matter what higher risk we had for another child with spina bifida, we wanted another.

So we were hoping to use this blog to update and share any type of news regarding how baby number two is doing, but we are still awaiting.

We went in for our nuchal screening at 12 weeks with my high risk doctor and we knew we’d be looking at baby’s head and spine also.

At a little over two inches head to rump, the spine isn’t exactly visible vertebrae to look for any defects.

So we could not rule out that he or she does not have spina bifida, but we were able to look at the head and brain and determine that everything looked how it should.

The cerebellum showed no pulling, as if it would if the spine had failed to completely form creating a banana shape.

Dark coloring also means fluid whereas white means bones.

So when it came to the skull and brain, we did not see any excess fluid like we had with Oliver due to hydrocephalus (water on the brain).

These were all good signs but again, no definitive answer.

As far as the eventful pregnancy, you may or may not remember that I had Oliver at 30 weeks gestation.

My body had actually tried evicting poor Oliver at 24 weeks, but we managed to hang on a little longer.

This was all due to my cervix shortening early, causing contractions and funneling.

It was too late in the pregnancy to take much preventive care, so our option then was to just hang out in bed all day every day and hope he stays in!

This pregnancy we now knew I have cervix issues and are able to take the proper steps in trying to prevent these issues again.

With progesterone shots and hopefully a cervical cerclage soon, I can only hope to have a full term baby.

Prematurity along with a diagnosis is no easy task or journey.

I spent many nights too worried about Oliver making it through his next surgery for back closure or shunt placement that I would forget to remember he also had immature lungs or was under three pounds!

This is why I can completely understand the worry amongst friends and family, but I do want to say that I have amazing support from Aaron and others.

I am doing all I can to carry a healthy, long pregnancy.

Along with that, no matter if we have another premature baby or receive another diagnosis, we are as prepared as we can be.

We trust that we were chosen as parents for baby number two for a reason and are ready for this blessing.

Now, whether Oliver and Aaden will have a baby sister or brother…. you’ll have to wait to find out!!

It is a procedure that one would assume comes with ease, yet I find myself nervous and fearful of rejection.

Denial. Claiming he is too small, or that there is no definitive proof just yet that he absolutely needs one.

If you would have told me that we would one day be doing this, when Oliver was born, I would have thought you were crazy.

I was all for pushing independence and faith in him one day walking.

Granted, this is still a high possibility but what I did not understand was that a wheelchair is Oliver’s independence in disguise.

We have a man-made wheelchair at home, which is designed out of a bumbo, stroller wheels, and a wooden base.

Ever since Oliver has learned how to get around in it, he has been able to discover his surroundings.

He would slowly push the wheels back and forth and realize it moved him.

That then transitioned into full rolls up and down the hallway.

I now catch myself gripping at him to stay out of the cabinets or to leave the dishwasher door down while I put dishes away.

He has finally learned how to crawl, and we encourage both types of mobility, but sometimes we just want to get around the easiest way possible.

Sometimes he just may not feel like mustering up the extra strength to get from the kitchen to the living room by hands and knees.

Getting a wheelchair for Oliver has not in any way signed over his ability to one day walk.

We do know that being almost two years old, he needs to get around in any way he can and be a kid.

For him, this just means by a wheelchair.

We unfortunately have had many friends in the community we are apart of get denied for a wheelchair for their child or children.

This is just another fight we have to go through to get what is right for our children!

I am hoping the process goes easy and we can get this little boy cruising.

Out in public to be exact.

Pushing him around in a stroller is one thing, but being able to get from A to B by his own self is where independence grows.

I want to look at him cruising around with his older brother and see the happiness in their eyes.

I want them to learn and understand the equality of one another. I am no longer afraid of the thought of my little boy being in a wheelchair or of the stares and looks I may receive.

I have hit the pave in the road that finally knocked some sense into me!

Getting him this device is not bounding his body but rather setting it free!

Who wouldn’t love to finally receive the gift of mobility, no matter what shape it comes in?

It usually starts with the doctors upon diagnosis.

We have to fight for their life and the decision to continue the pregnancy!

Crazy, but it happened to us.

Then we have to fight the first stares we get when we go out in public.

I usually take that battle by informing the clueless stares and pointing fingers.

Educate the unknown.

When we applied for disability for Oliver, I never thought I would have to fight that.

Our first denial claimed that he was not disabled.

We appealed that with records showing that being born with spina bifida, hydrocephalus and clubbed feet which has caused paralysis does indeed fit the disability criteria.

Then we were hit with a second denial. “Although your son is disabled, it does not interfere with his daily life.” I quote that one, because it is my favorite.

Even though Oliver was only 9 months at the time of that denial, how could someone who does not know our daily life claim his disability does not interfere with it.

They are not there every three hours when I have to cath my son because his paralysis affects his bowel and bladder.

They did not understand that when I appealed the second denial, Oliver was now 14 months and still unable to crawl or walk.

Oliver was three months when we first applied for disability and was 20 months when I finally got a hearing for him.

The next battle within this war, came with finding a representative.

I argued with myself that I really did not need one, and after failing to find someone who would represent an infant, I decided it was the only way to go.

I told the judge I believed and felt fully confident in my ability to explain all his medical history as I was the one who took him to every single therapy and appointment.

The hearing proceeded the best way it could, and only addressed his medical issues and necessities.

One month later and I have finally received my letter that we are approved!

The approval was like a cake with extra yummy frosting, but the cherry on that cake came within the letter.

In just a couple of sentences the judge mentioned how great of a job I was doing for my son, and how the state failed to realize that my son indeed did have a disability that interfered with his life on a daily basis.

Hearing from someone else that could have turned us down that I have done a great job for my baby and fighting for him was almost just enough for me.

If only that was enough to help pay for his medical equipment and therapies, lol.

All in all, I am glad that I put in the fight for him and remained strong when I was almost knocked down twice.

Fighting for him, when he has yet to have a voice for himself is so important to me.

Whether we are advocating or fighting the system for our children – never give up hope!

Unfortunately November did not show any rainbow at the end with my pot of gold.

During the month of October, we were busy raising awareness for Spina bifida, attending the annual Walk-N-Roll.

Besides that, Oliver was facing his own little battles with a reoccurring right clubbed foot, central and obstructive sleep apnea, pressure sores, UTI infections and teething!

This poor little guy needs a bigger break than I do!

We are back to weekly casting to try and stretch his right foot out.

We successfully corrected both clubbed feet when he was around 6 months of age, through this casting.

It has been a year since his Achilles tenotomy release surgery, and his right foot has started to tighten up again.

Our goal is to always avoid surgery when possible, so we opted for serial casting again.

Although he does not fully crawl yet, this 18 month old just wants to be on the move…all the time.

Throw a full leg cast into the equation and you have one frustrated and stinky baby!

During our second week of casting, we developed a pressure sore and had to take a break to let it heal.

Because he is paralyzed from the knees down, blood flow to the areas is poor because movement is not existent.

This means when he has cuts or sores, they are much, much slower to heal than most others.

Unfortunately this can lead to serious infections if not cared from properly and caught early enough.

We just so happened to catch his in good timing, and it cleared within two weeks.

So here we are with his 4th cast, ready to be done and take a bath!

The next little bump on our list, was this recent diagnosis of central and obstructive sleep apnea.

This all started with snoring which led to a sleep study, resulting in our new diagnosis.

After the results, we were sent to an ENT (ear, nose and throat specialist) to evaluate his tonsils and adenoids.

The doctor informed us that they were larger than other kiddos his age, but not too alarming.

Our only option was surgery to remove them.

Nooo!

Remember, our goal is to avoid surgery at any time.

So I called the neurosurgeon and he now scheduled a full head and spine MRI to see what his Chiari is looking like.

Chiari is also known as hind brain herniation.

For Oliver, because of his spinal diagnosis, it pulls on his cerebellum thus protruding into his cervical spine.

This can cause problems with eating, swallowing, breathing and more.

This is why when Oliver started snoring, I knew something was different with his breathing and the amount of space in his esophageal region.

Beginning of November we have the MRI, and surgery may be our only two options whether it be to remove the tonsils and adenoids, or a more serious surgery to decompress the area his Chiari may be affecting.

Our other constant battle is urinary tract infections.

Oliver suffered two before we got told that we would cath him around the clock, every three hours.

Just recently, while cathing, we got our third one.

They are such a hassle to go through, because he gets fevers and different symptoms that could mean a number of things other than an infection.

I always look like the over paranoid mother sending him in to the ER for a fever that won’t go down with medication.

I have left with respiratory diagnosis, simple cold diagnosis, and this last one was the real deal.

Because of this last one, we are now prescribed a daily antibiotic to take until who knows when!

The last little update comes with ease compared to the others.

Teething… this superman of mine popped in, not one but TWO molars without me even knowing.

I was simply scanning his gums one day and noticed the two pearly whites!

With all these downs, comes our ups though…Oliver has learned to say, “Look!” and, “Dog, Wow-wow.”

He has the more interesting conversations with himself that I can only wish I knew what he was really saying.

He has even recently learned how to use his Bumbo wheelchair!

Life is a constant rush of appointments and treatments for us, but we always make sure to stop and appreciate the little things we have going.

Nowadays, it’s as simple as choosing which social outlet you would like to communicate through.

It is readily available at anyone’s fingertips…by computer, tablet, cell phone or even watches!

Crazy, I know.

Having this outlet can and often does encourage one to share more than what is needed with the world.

I did it myself just two days after receiving Oliver’s diagnosis.

I bared all to the world about my son receiving his diagnosis of spina bifida and what that would entail for us then and for the future.

At that time, I only had a Facebook.

It then grew to Snapchat, Instagram and Twitter.

I slowly let go of Twitter and Instagram, sharing my main informational posts to Facebook and pictures of the family on Snapchat.

There were many times where I wanted to let go of Facebook but was convinced to stay because I had involved so many people in our life.

They enjoyed and looked forward to my updates on how Oliver was doing with treatment, therapy, and all his appointments.

It was through groups on Facebook that I could ask questions pertaining to his health, making it more convenient than calling his own doctor.

Life turned into communication through wall posts, shares and comments.

I would hear countless times through my mother or Aaron that my face was always in my phone.

I was never just in the moment enjoying things for what they were.

I had to snap, share and post anything and everything.

I was addicted to say the least.

Not just addicted to social media…shamefully, I was addicted to the attention and kind words or comments left by family and friends.

It was not until the day my step son told me he wished I was more present and less on my phone, that I realized my problem.

I just could not even fathom how to unplug myself from something I was on 24-7.

So I did the only thing I could think of; I deleted my Facebook, permanently.

With a son who has different needs and a diagnosed condition, I was finally able to spend more time with him and actually in the moment of life.

I continue to update his blog and update through the Firefly blogs, but have given up the constant, daily peeks into our life.

Now this is not to say that anyone with a social media account is never present in life, but just my own personal account with losing control.

I want people to be more involved with us, if they would like updates on Oliver.

I don’t want him to be somebody they follow through internet posts.

He is so much more amazing and quirky in person, than I can portray through words online.

My only recommendation to those who may be reading this, is to take a chance and go a little prehistoric. Lol.

Make that phone call to a distant relative, or write that letter to a long lost friend.

We had more doctor visits with Oliver, we were more cautious and aware of any symptoms he had, we even found ourselves with a new set of friends.

It is actually amazing what social networking can provide now-a-days.

I found all the support groups that I am a part of through Facebook.

One day, while scrolling, I even came across this very website that posts my blogs for all of you to read: Firefly.

Most days, I curse Facebook for that weird, “suggestions”, thing they do based off previous research you have done.

It creeped me out to see the shoes I so happened to research on Google the day before.

The only day it did not freak me out, was when they suggested this company who provided products for special needs families.

I had previously done some research on mobility devices for young infants.

Granted I still do not know if Oliver will walk or not, but I wanted to see what was out there.

I found a couple companies here and there, but the next time I logged onto Facebook….BAM! There it was.

In that little suggestion box.

I understand how it may look, me bragging about the same company that gives me the opportunity to blog for them, but they are truly amazing!

I was introduced to not only mobility devices like the Scooot,but other products as well.

Although Oliver does not need some of these products, it was nice to know if he had ever needed it, that it was out there and available.

What amazed me the most, was seeing how connected Firefly is with the families.

On the wall, at any given day, I can go visit their Facebook page and see that we are more than just customers.

There are so many different ways you can connect with them, whether it be through their products, family blogs and updates, or even through their Firefly Community.

I have my eyes set on the Scooot, which will allow Oliver to get around while he builds the strength to one day walk. When he is of age, and we purchase it, we know that we are more than a customer.

It is like a giant family…they know what new possibilities their products can provide and show that with all the amazing pictures we see every day.I am not just bragging about Firefly because I blog for them.

I am bragging because I am truly thankful I found a place that sees my son for him.

For finding a company that knows that for our children there are no limits as to what they can accomplish.

I officially declare this my, “Firefly Appreciation Blog!”

Seeing everyone else’s amazing photos with their Firefly products, I ask; What has Firefly brought to you and your family?

What are you thankful for?