My Dearest Father

You and mommy made the decision to add a new little life to your family.

You stood by her side as she waited for those two little lines to appear.

Within her body, magic took place.

Life began for me.

You stood by her side at each appointment.

Through a black and white screen, you watched me grow.

You grew with excitement, knowing you would find out soon.

Boy? Girl? You said you did not care.

But along with finding out you would have a son, you found out other things too.

You heard the words, “Neural tube defect. High chances. Specialist doctors.”.

Life grew confusing and worrisome.

But from within, I still continued to grow.

My heart was strong, even if other parts of me were not.

Spina bifida.

That was my diagnosis.

But daddy, you did not let it define me.

You did not let it change your love for me.

You stood by mommy’s side and said we could get through this.

You felt my first kicks.

Mommy complained of my constant hiccups.

Life, continued.

Continued to grow.

You barely made it in time to welcome me to the world, 10 weeks early.

Surprise daddy!

You both named me Oliver.

Three pounds in weight, seventeen inches in length.

Small but mighty.

45 days in the NICU, but you saw me every day that you could.

You continued to watch me grow.

I am strong daddy.

Strong like you.

When it was time to come home, you were scared.

But guess what daddy?

I am seven now, and we did it!

You let me kick your butt in video games.

You cheer me on when I play baseball.

You encourage me to never stop chasing my dreams.

Wrestler? Body builder? Policeman?

You believe in me to do it all.

You are my hero.

From day one, you stood by my side.

You helped make me the courageous, brave, and loving boy that I am today.

One day, I will be a daddy like you.

And I will remember all the things you did for me.

I will love, like you loved me.

But today is a day that I want to give thanks.

Thank you Daddy.

Happy Father’s Day.

Special needs parenting: Living with Anxiety

Appointments with my son these days always lead up to dread, and ultimately anxiety.

Not only within myself, but he too, suffers from the anxiety.

At just seven years old, he already cringes and fears the mention of having a doctor’s appointment.

I sometimes look back and wish things were as they were when he was a baby. So innocent. So unaware of what was to come, even though the tests and procedures where of benefit to him.

You can only keep them unaware for so long.

Simple procedures like a routine dental cleaning, have now turned into something that needs anaesthesia.

Without something to calm his nerves, or put him under, my son cries, gags, and even vomits at the attempt to look into his mouth.

And the hardest part? All this doesn’t make any future appointments easier.

No matter how I try to explain that this procedure doesn’t hurt this time, that this is super quick if we just cooperate; we always end up leaving with more scars on top of the ones he already has formed in his memory.

Seven years old, and I see him worry about every little thing. Is there a way to cope without medication?

Without adding another little pill to his ever growing collection?

I have yet to speak with a doctor about it, as I am trying to learn and work through it with him myself.

It was not until my early adulthood that I learned I lived with anxiety. I chose the route of medication.

But it has not been an easy process.

I am old enough to know that certain things aren’t how it should be, and I am able to successfully communicate that with my doctor.

We are able to work together to change or alter medications to find the right fit.

But when you are seven, your capability of doing so drops dramatically.

For now, we must find ways to cope and learn together. Life is always a learning process.

But having a child with special needs, we usually find ourselves having to find ways around the “norm”.

Finding what works for us, and running full force with it until it no longer works.

Then we come back to the building blocks and start again.

Living with anxiety isn’t something that I want to cripple my son in living his full life.

But in a world where every day there is something to worry about, how do we work past that?

Home Away From Home

As of June, my little family and I became new residents to the state of Maine.

Both my husband and I were born and raised in Texas, so this was quite the change.

A change we both were ready to make!

Moving here we envisioned frequently visiting family, but that has now taken an indefinite halt due to COVID-19.

And as much as I hate to make you read another blog about COVID-19, with the holidays it sure makes things extra hard.

Can I just pause and say what we are all thinking, “What a dang year it has been!”.

I did not imagine the whole year to fly by and be such a dramatic change from last year.

With the holidays and the precautions set in place by our Governor, Christmas is looking to be a small and intimate celebration with just us five.

Having three children in the home, and more importantly one that is more susceptible to illnesses, we just can not risk going out and taking part in all the ritual affairs that the holidays bring.

It is a hard decision to come to, and one the kiddos might not come to understand just yet; but it will definitely make one Christmas to remember.

With change, comes new opportunity though.

New opportunities to start new traditions, or put a small twist on old ones.

For our family, we will be starting a new tradition of gingerbread houses!

Since we have the time, I don’t just mean the pre-made ones either.

Go big or go home, right? (Although I am not sure that still works, considering we are already home…).

Anywho! I have come to realize that it can be all too easy to sit and mope about not being with my family during the holidays, or I can try and make the best of it.

For us, in this trying time, the best of this situation means spending quality time with my husband and children that they will hopefully carry in their memories for years and years.

I wish you all the best during the holidays, and may you all have merry, merry Christmas!

Taking After Mom

Do you remember being a child and going to get your eyes checked?

If you were anything like me, you begged for glasses; may have even faked a few letters wrong to try and sway the tests in your favor.

Well, if you are still anything like me now, twenty years later, you have found yourself with those said glasses and this time hating them!

I have always had great vision, until I had children.

I remember someone recommending that I go get my vision checked after I had my first born Oliver, because pregnancy and hormones can do a funny thing to your vision.

They sure weren’t wrong either.

Astigmatism and near-sighted vision, glasses have become my new fashion statement.

With Oliver having a VP shunt, it was always recommended that when he become of age, I should start getting his vision checked routinely.

Not only for his vision, but an ophthalmologist would be able to check the ventricular pressure and possibly even foresee any issues with his shunt and hydrocephalus.

So of course we started his visits when he came of age, and every year we kept up with them.

Recently, now that we are remote learning with his school, I had noticed him placing the iPad extremely close to try and read the print.

Mom instincts kicked in, and off I went to schedule an appointment.

This time around, it was actually a treat to see Oliver be able to read the large and smaller letters off the chart, and tell the ophthalmologist whether, “this one or that one” looked better.

A short while later, we found ourselves out of the exam room and in search of a new pair of glasses for Oliver. Reading glasses to be exact.

Just like his mom, slight astigmatism and actually the opposite with far-sightedness (which is still common with kids and lessens with age).

And you guessed it, just like his mom, Oliver was quite the excited one to find himself a pair of glasses.

Luckily, he only needs them for reading, and even more luck: his pressure and eye health checked out just fine!

We are new to the journey with glasses, and children are not forgiving to fragile things like lenses, so if you have any recommendations please leave a comment!

Until then, enjoy my little “Harry Potter” Oliver and his new set!

The hassle of transferring care

As of June of this year, our little family left the good ol’ state of Texas and moved up North to Maine.

It was quite the drive, lasting us four days and one tire blow out!

This drive was not easy with 3 kiddos in the mix and a few of our pet birds; but we made it.

Now in October five months after the big move, I am in the ugly hassle of transferring not only records for school but health records.

Normally, this would be pretty easy only consisting of wellness check ups and visits.

Unfortunately, this is not the case when you have a child or children with any type of health problems/diagnosis.

Diagnosed with spina bifida, Oliver has seen doctors since the very first day he made his appearance on Earth.

When I saw doctors, I am not only talking about pediatricians, but: urologists, podiatrists, neurologists, orthopedists, physical therapists, and the list goes on!

His amount of medical records could put the Harry Potter series to shame.

So as you can imagine, getting the whole gang to hop on board and get these records over to the new facility takes quite some time and hiccups.

The downside to this, is he cannot see anyone for routine care until they know his background.

This not only keeps them in the loop for the very specific care Oliver needs, but it allows them to send and refer us to other’s who can help.

In the world of healthcare, where technology is always advancing, transferring medical records is not my favorite nor the quickest thing to do.

I am glad to announce though, that despite the current pandemic going on, transferring school records and starting up Oliver’s new care plan for school has been awesome!

Although Oliver does not need any cognitive assessments or guidance, he does have a care plan for physical therapy offered through school.

Can I just say thank goodness for video calls??! We have already started our physical therapy through video chat, and have found awesome resources we did not even know we had in our own home.

For example, we use soup cans for building arm strength! Need help building core strength? Who knew a stepping stool and a box with scarves or clean face masks could do the trick.

Moving across the country definitely was not the easiest thing, and still continues to be a transition in progress; but I have learned through other families to continue advocating and pushing for what your child or children need.

Building from the ground up again, we will hopefully get to a care plan soon that fits our family.

Until next time, pray the fax machines don’t give out when sending our pages and pages of care history.

Let’s Dress Up!

Halloween has been quite the topic this year! Not only has it been the topic for discussion in most households due to COVID-19, but it has also been in the news for Target’s new adaptive costumes.

With options ranging from a vibrant dragon to a plush unicorn, you can either find costumes thoughtfully designed for those with sensory needs or inclusively designed for wheelchair users.

Of course, as my son Oliver could very well demonstrate, you do not need an adaptive costume to have fun! With little tweaks here and there, any costume could be an option for your kiddo or kiddos.

Although you won’t find it in Target’s adaptive costume section, Oliver wants to be Marshmello (the DJ) this year. I am not the handy momma as some of you might be, but we had our first trial run of what we envision the costume to look like. (See photo for the cuteness overload!) Because we chose to make the costume somewhat, modifying it was not hard. We started with the unmistakable mask that Marshmello is known for.

On Amazon I found a mask that goes on and comes off with ease and even lights up in different colors with the use of a remote. Digging from his mounds of clothes, I was able to find a simple white t-shirt and white pants to make the outfit. Per Oliver’s request, we completed the look with all red shoes.

Now the fun part could begin; designing a portable DJ booth for his wheelchair. Using a simple cardboard box we got from a previous package, we spray painted that black and added some print out decals to make buttons and speakers.

For the records, this was executed with a trip to an antique shop in which I scored a deal for two vinyl records for five dollars! Reserving a spot in the box for my phone to play music while out, his stage was now set. Now we have to just patiently wait for Halloween before he can debut his look; but until then we will just have to figure out exactly what our plans will be given the current world crisis.

Whereas Target has done amazing things for our community by including an adaptive costume line, there are always ways you can tweak other costumes on the market or even make your own. It is such a fun time to get creative and have fun.  I would love to hear what you may have planned for your family and kiddos this year on Halloween day and what they will be dressing up as!

Spina Bifida Awareness Month

October is not only time for spooky decorations and trick-or-treating, but it is also a month for awareness. For families like my own, a very important awareness that most have heard about but may not know too much about. October is Spina bifida Awareness month!

Spina bifida is a birth defect in which a developing baby’s spinal cord fails to develop or close properly.

This defect occurs in the early weeks of pregnancy and is usually not diagnosed until the second trimester screening. There are three types of spina bifida ranging from the mild form to the most severe: Spina bifida occulta, Meningocele, and Myelomeningocele. Those living with Spina bifida occulta may not even know they have it, until something prompts an x-ray or scan of the lower spinal cord. It can often present as a large patch of hair over a dimpled area on the lower spinal cord.

Meningocele is when a sac of fluid comes through an opening in the baby’s back. This sac does not include nerves and is closed. Myelomeningocele, which is what our Oliver was born with, is the most severe; in which the protruding sac contains part of the spinal cord and nerves. This sac can be open or closed. Because Oliver’s sac was opened during my pregnancy, his spinal cord and nerves were subjected to damage by amniotic fluid and even physical trauma by moving around in the uterus.

For myself, it is important that I bring awareness because this is a diagnosis that is very misunderstood, and doctors still have much to learn about it.

There is little known indications for what may cause Spina bifida. It does not mean that mom did not take her prenatal vitamins (which contain folic acid aimed to prevent neural tube defects), it does not mean she was dieting prior or during pregnancy (“robbing the baby of nutrients and vitamins”), and it also does not mean that it is genetic (which most assume).

There are so many things that people assume with a spina bifida diagnosis, but most times it is far from the truth. Spina bifida is known as the snowflake diagnosis, because no diagnosis is the same. It may affect the same level on the spinal cord as another person, but the affects could be so different.

One thing I do know, is that the assumption that those living with spina bifida “have no quality of life” is FALSE! These babies come out fighting and continue fighting throughout their life to go above and beyond what is “expected” of them. Even if your child never takes his or her own steps, even if they need assistance breathing or eating, even if they blessed our lives for a short time here on Earth; they are true superhero’s!

A Birthday To Remember

In the month of January, beginning February, I had set out to planning Oliver’s sixth birthday! Despite the disbelief that he was about to be six years old, I wanted to finally have a party where he could invite his friends from school.

Booking a really cool indoor play place, all we had to do was wait for the day!

Unfortunately, that is around the time this virus hit our country and essentially sending us into a spiral that ended up in state-wide lockdown. I had no idea that it would last long enough that I had to make the decision to cancel the booking and start formulating a new plan. But how does one plan a party on lockdown? Let alone for a soon to be six-year-old who doesn’t quite understand what is happening in the world….

I decided with the help of a few viral videos, to try and get a drive-by parade set up for him! I contacted the local police department, which is located directly behind our complex, and crossed my fingers for a reply. To my surprise, the Chief responded with as much excitement as I had hoped for. He told me to give him the date and time, and he would take care of the rest.

Little did I know, the length he would go for my little boy.

On April 11th, I set out with my little family of five on a scavenger hunt. Oliver had no idea what was in store, and honestly, neither did I. At around 11am our scavenger hunt led us to the back gate, right where we needed to be. With butterflies in his stomach, Oliver voiced how nervous he was for this “big surprise”. A few moments later, I could see the start of the parade coming our way!

It began with Law enforcement vehicles, which included ambulances and fire trucks new and old. The Chief has also reached out to a local JEEP club as well as Oliver’s school and ensured that whoever wanted to join the fun, could.

With over 50 cars in line, it sure was a sight to see. I believe there was not a dry eye in sight! The parade had even managed to bring out many of the fellow residences from the complex outside to see what was going on.

I could not, and can never express the amount of joy and gratefulness I have for this gesture done by the Hewitt PD. They honestly brought a day to my son, that he will never forget!

Take A Load Off Dinner

Having a household of three growing boys and my husband, it seems that I am always in the kitchen. There is never a shortage of “I’m hungry’’ going around.

Now that life is all about being locked up 24-7, I have been struggling with ways to keep the boys fed and keep the diversity in meals going.

When all you have to do is eat, sit around, eat some more, and binge on Netflix, cooking turns into a chore and you get tired of the same old meals. Thanks to my secret listeners on Facebook, I had an ad pop up on my feed for a meal service called EveryPlate. It was advertising three meals with two servings each for less than $3.99 a plate. That was six meals sent to my house to make, for less than $40 including shipping!

I have always wanted to try a meal service, and with Oliver being so picky yet striving to provide him with the best choices, I opted to try this one out. Three months in with the service, and needless to say I am in love! I have been able to get multiple people sign up for the service (no pyramid scheme here), and they love it too!

Every Tuesday, I get my meals and ingredients sent to my door in a box with adequate packing and ice blocks to keep everything cold and fresh. In the box is the meals you pre-selected along with the recipes on how to prepare them. Every recipe comes with everything you need, starting with the meats, fresh produce, all the way down to the seasonings and herbs. Most of the time you just need to add your own flour or water and oil.

Because I have boys who can eat, we get 4 meals sent to our household each week. With the option to skip or cancel anytime, I am never in fear that I am locked down in some kind of contract. And no, I did not or am not getting paid to write this. Lol.

Just from one family to another, this has saved so much time and stress off of my hands and mind.

The recipes are ever changing and always top notch. Oliver, being my kiddo who has the allergies and pickiness, has enjoyed himself some bacon grilled cheese, chicken sausage tomato soup, and even Honey Chipotle chicken!

With it being such a risk to head out to the stores these days, this is such a great option to have your food delivered right to your door!

**Disclaimer** Other food/meal services available