Thank You For Being the Best Big Brother – Raising Children with Disabilities

What I did not know, was that the day I made you a big brother, you would leave me in awe at how amazing you took to being a big brother to a sibling with a disability.

The day we told you that you would now be a big brother, we explained the duties that came with that position.

We explained that you would have to teach him the ways of the playground.

If he left the seat up, you would have to teach him that Mommy likes it down.

You would have to let him play with and possibly try eating your old toys.

In turn, I remember you expressing how excited you were to teach him karate.

How curious you were, about what he would look like when born!

Would he get your kind, honey brown eyes?

Or maybe share your energetic spunk?

Like the life growing in my belly, it grew in your eyes with all the possibilities he would bring.

I never thought there would have to be a day where I had to explain to you that your brother might not be able to run around with you outside.

I never expected to have to depend on you to be strong for me, because I had the ugliest of rainy days trying to bring me down.

Now that your little brother is here and things are a lot different than before, I just wanted to say thank you.

Thank you for understanding that some days he may need more attention and extra care.

Thank you for being so patient when you tag along to his doctors appointments.

Thank you for showing him unconditional love, that has never been affected by his diagnosis.

I thank you for pushing him around in his wheelchair to give him that same breeze through his hair, that he would feel while running.

Thank you for pushing him to dream big!

I even thank you for sharing his story with strangers you just met while standing in line at the grocery store.

To me this shows that you aren’t afraid of what people think, nor are you scared of his diagnosis.

You may not always be the first one I tuck into bed at night, or the one I spend a little extra time bathing…but you are always on my list of people I thank the Lord for.

Each day that passes, you go above and beyond to love Oliver for himself.

I am humbled to watch you grow into a strong, loving, and independent man with each day.

So if you ever feel like you aren’t appreciated…. you are!

You are still the sunshine to my rainy days.

You are the reason behind Oliver’s giggles.

You are the perfect big brother I always knew you would be!

Thank you, Aaden. <3

“Did You Take Your Folic Acid?” – Raising Children with Special Needs

At 18 weeks, I received Oliver’s diagnosis of spina bifida.

Doctors aren’t quite sure how genetics or other factors such as your surroundings play a role.

We all can relate folic acid to reducing the risk of spina bifida and other neural tube defects.

This is because it is drilled into our head, sometimes long before we even consider conceiving.

Statistically, it has greatly reduced the number of children born with neural tube defects, and shown enough evidence to support the connection between the two.

Did you know that folic acid is synthetically produced in fortified foods and supplements?

Folate, one of the B vitamins, is basically the pure, un-enhanced version of folic acid.

Folate is found in foods such as spinach and orange juice.

Because folic acid is synthetically produced, not all bodies break down this vitamin the same.

In fact, some do not even know what to do with it, and simply store it away.

Like my body!

Being apart of a spina bifida group on Facebook, I had seen a lot of the women talk about being tested for a MTHFR gene mutation.

There are two different mutation types that you could have with this.

One is C677T SNP and the other is A1298C SNP.

It seems like just a jumble of words and numbers, but they both basically mean that your body is unable to break down folic acid and use its benefits.

Now this test is not something that most women who receive this type of diagnosis for their baby link together.

I had no idea this test existed without reading it upon the group.

I had no idea I even had the gene mutation.

Oh ya, did I mention that I had it?

Received the mutation from one parent.

Every time a doctor read about my son’s diagnosis, they would proceed to ask if I took my vitamins like a good girl or if I happened to be dieting.

I sure was not dieting, and I started taking my pills well before Aaron and I conceived.

Shocking news to the doctors, but they assumed it must be genetic (nowhere in the family had spina bifida occurred to our knowledge).

But I took that extra step and took this test!

Now I knew…. No matter how early or late I took these pills, it would not make a difference.

Here my body was, just storing this foreign substance I kept ingesting… twice a day!

After Oliver was born, my doctor put me on high dose folic acid.

This was before I knew of this test and my gene mutation.

Most doctors will actually just assume you didn’t take enough folic acid and will result to prescribing a higher dose of it.

Now that I know of my gene mutation, I know this would not have done me any good.

By good, I also mean other risks of this mutation.

“Genetic variation in this gene may influence susceptibility to occlusive vascular diseaseneural tube defectsAlzheimer’s disease and other forms of dementiacolon cancer, and acute leukemia, because mutations in this gene are associated with methylene tetrahydrofolate reductase deficiency.”

Taking this test and extra step beyond just receiving and accepting the diagnosis from my doctor, I have hopefully reserved a healthier future for myself and my son.

Because it is a gene mutation, I could possibly pass it on to him so we will one day have him tested as well.

There is sometimes more to a diagnosis than what meets the eye or what is told or assumed by your doctor.

Sometimes there is no other answer.

But I encourage all to do their research and ask questions when things might not make sense.

To My Superhero for Father’s Day

You don’t have super human strength, but you are strong enough for both you and I to make it through therapy when I feel like I can’t do it.

Before I was born, mommy said that you would always talk to me through her belly.

Teaching me the ways of a jedi when you watched Star Wars, or keeping me updated on the score of a baseball game.

When you found out I would be a boy, you went on a mission to find a strong name for me!

Without even knowing at the time, what lay ahead of me, you knew I could tackle it all.

It wasn’t long before the doctors revealed to mommy and you how strong you both would have to be for me.

I thank you everyday for being so tenacious despite everything the doctors told you.

Mommy even told me you cried the day I was born, but don’t worry daddy, I wont tell your archenemy.

You may not have known it, but I remember when you would come into the NICU every night to read me a bed time story.

Stories of princes going to save beautiful princesses, or even stories on how to use the potty!

It sure was nice to hear your voice over the many beeps and alarms that went off.

When I came home you had to be very gentle with me.

Your strong hands turned into a soft blanket that kept me warm.

Your immense chest compared to my tiny frame became my snug bed I could just sleep forever on.

I even remember seeing someone as strong as you, crumble in the quake of a diaper change!

Now that I am getting bigger and stronger just like you, you take me on plane rides through the sky flying high in your arms.

Your the best support when I just have to keep my head up in therapy for five more seconds.

Things may come a little different for me, but you always seem to find a way to help me succeed.

With your future seeing skills, we know that one day I will have to be catheterized, will need assistance with walking, and still have those countless visits to the doctor.

But I am not scared daddy.

You say that you have never seen someone fight as hard as I have, but I have.

I have seen you go to work everyday so that mommy can stay home and take care of me. I have seen you work extra hours, just so that we could put a little more into savings for that special chair that will help me get around easier.

Above all, I see that you love me more and more everyday, ignoring that ever persistent fear of not knowing what may happen.

I am strong through you and my family!

You have shown me what it means to be able.

Marvel may not consider you a superhero, but I do daddy.

My superhero.

So I want to wish you the happiest of Father’s day daddy, and a big happy Father’s day to all the daddy’s out there standing tall for their children.

We love you more than words can express sometimes, and just want you to know we cherish every game update you share, every wrestling move you teach us, every extra inch of covers you can tuck us into at night.

Thank you daddy.



“I’m Not Scared of Having Another Child with Spina Bifida”

My family was the first to ask me if I planned on having more children after Oliver was born.

I took a shallow breath before answering, not just frightened of the increased risk I had for another child to have spina bifida, but the thought of another human being to care for when I am just managing with one little guy.

Three percent.

My chances of having another child with spina bifida is increased by about three percent.

I went home later that day and I couldn’t get the question out of my head.

Of course, I had given no answer to them.

How could I when I was unsure.

It wasn’t as easy as deciding whether or not we could afford another child’s college education, or whether or not we could afford to upgrade to a four bedroom house.

This was my health and the future health of this child.

I suffered from an incompetent cervix during pregnancy, forcing me on bed rest at 24 weeks.

The emotional toll from receiving Oliver’s diagnosis was tremendous.

Could I do it again?

In the beginning I was almost sure that I could not, and that my dream of having at least two children of my own would have to be altered to just one.

But then I realized how much I love Oliver, and how his diagnosis was no worry of my mind anymore.

Sure it was scary in the beginning, we lived everyday with the unknown outcome of his health.

Then came April 11, 2014.

He was the most magnificent thing I had ever laid my eyes on.

He had ten beautiful little fingers and toes, a head full of hair, the longest eye lashes I had ever seen, and even the open lesion on his back was beautiful.

Here we are now, a year later, and his scars are just stories for him to tell one day.

Stories that will tell all of how much he went through, at such a young age.

Days, weeks and months soon past and I no longer found myself scared of this diagnosis.

I knew my answer then and there.

I actually waited for people to soon ask me again if Aaron and I would have another child.

“YES!! Of course”, I would say.

Why wouldn’t we?

I could not have asked for a better child when Oliver was born, and why wouldn’t we want a match to that.

We are enjoying Aaden (Oliver’s amazing big step-brother) and Oliver, so of course we don’t plan on having a baby anytime soon.

And yes, I am sure when that day comes to find out his gender and we get our second trimester screening, I will have that fear.

But we are no longer afraid of the unknown…because we do know now.

We know that spina bifida has never described Oliver, other than in his medical records, and that Oliver has overcome all that spina bifida has put in his way.

We are such adaptable creatures, that we just learn a new way to live life.

We know that Oliver is quiet, he loves laughing, hates tummy time, and loves his apples.

We know that three percent no longer frightens us.

Solving the Back-to-Work Dilemma

This transition was difficult to say the least.

I did not just get hit with knowing my son would be born with spina bifida, I was put on strict bed rest at 24 weeks in the hospital.

Needless to say, I could not keep a job while being confined to a bed 23 hours a day….

22 if they allowed me a shower.

The first days and week came easy… extremely easy.

I had this menu I could order from up to 4 times a day, a TV right in the room, a bed that had endless possible positions, and nurses who beckoned to my call.

All I had to do was stay in bed, and allow my baby boy to continue developing and gaining that weight (which gave me the excuse, hey the extra weight is him not me, lol).

Things started to get hard and depressing when my menu options were exhausted and the TV channels were all the same.

Aaron, my fiance, as well as my family all had to return to their daily working lives, and leave me at the hospital.

Oliver ended up being delivered at 30 weeks, ending my bed rest at 6 weeks total.

When I was able to bring Oliver home, at what would have been 36 weeks gestational, I was so busy I didn’t think twice about wanting to work again.

We had appointments with doctors for his diagnosis, for his newly added diagnosis from being born premature, and therapy appointments.

You’d think being a first time mommy to such a fragile baby was time consuming enough!

Oliver is 1 year, 10 months adjusted now and our appointments have spread out to every 3-6 months, versus every other week.

Everything now is mostly follow ups, and the daily rituals with our new founded friends, the physicians.

Yet here I am, one whole year later and I still do not see employment in my future.

I initially battled the yearning I had to work and make money of my own, but now in this fun stage Oliver has hit where his little personality is sprouting, I battle not being able to ever leave him.

Every mother hits this stage when deciding whether to go back to work or not.

What will I miss while I’m working?

Will I lose that bond with him or her, now that I will be gone and someone will take my place?

Is it worth the money?

Everyone has a different answer to these questions.

I figured part time work would be the path for me, so I could still attend Oliver’s therapies and schedule all other appointments in the AM or PM depending on when I worked.

So I applied and had some interviews, in which I was honest with letting them know I would try every effort to schedule around work but occasionally I would need that trip up to Dallas for those all-day appointments.

Well, I never heard back from those jobs or if I did, I was not their primary choice.

I took this as a sign, and as I scrolled through my bad habit I call Facebook, I found a post by Firefly.

They were looking to recruit more parents to blog about their experiences with their children.

I couldn’t think of a better sign that I just needed to keep my butt home, enjoy my son and the endless appointments (yea right), and just blog for others about our everyday and not so everyday life.

So here I am, 6 blogs into it, and I absolutely love it!

This also leaves me enough time in my life to horribly fail at all these “crafts” I try tackling.

For those stay at home moms who just aren’t bloggers but have found your calling elsewhere, please feel free and share with us!

Here’s my Secret Weapon for Surviving Long Hospital Visits…

They, at Scottish Rite Hospital, will be cathing Oliver to fill his bladder up then test his pressure.

We will move on to Nuclear Medicine and have him injected with a dye, wait about an hour, and go back to have scans to make sure his kidneys are functioning like they should.

Due to Oliver’s diagnosis of spina bifida, he has a higher risk of needing to be cathed due to nerve damage, and an incompetent bladder.

So far, Oliver has been able to go on his own without any help.

We are on medication for his bowel program (lactulose and sena).

I have found these easy to take when mixing them with his formula.

We do them once a day, a bottle apart.

So being at a higher risk for these bladder problems, it thus puts him at a greater risk for urinary infections and all those nasty things that could harm the kidneys.

This is why we do the testing, and this is why injecting this dye is our only choice.

Oliver doesn’t just have this type of urology testing though.

He has had appointments for the Spina Bifida clinic at Scottish Rite, neurology appointments for the VP shunt he has placed, visits to the nutritionists, therapists, podiatrists, orthopedists and more!

I have literally opened up a new section in my brain to solely remember his doctors’ names, reasons for visits, numbers, etc.

If you know babies, then you know hours and hours stuck at doctors’ offices can be quiet the hassle.

For this, I have come up with my cry-proof method to making Oliver relaxed and comfortable during these hour long visits.

I would first like to introduce this awesome toy I found at Baby’s R Us.

It has this activity set that can be removed and you can insert your ipad device into a screen protected area.

It has a little piece that if you rotate it, it will block the home button so your child doesn’t constantly click it, exiting the program by accident.

Now I am not one to just put an electronic in front of my child to keep him or her busy, but this works wonders for those busy appointment days.

Even if we don’t use the iPad, Oliver can keep somewhat busy with this activity set that can click over the iPad.

For Oliver tho, he enjoys this free app that shows fish swimming around like an aquarium.

It also has the cute little lullaby music that puts him right to sleep!

Also be sure to pack extra food, incase the stay runs longer than expected and if you use diapers, bring extra!

I once ran out of diapers on our first visit to Scottish Rite and it was not fun.

Now to keep Oliver comfortable, I have a stroller than can interchange into a little bassinet and I bring a blanket to keep him nice and snug.

Visits at the doctors are pretty uneventful now.

Of course, if you have any quirks that work for you and your family, we would love to hear them so please comment!