Today should have been my graduation day…

Our Latest Adventures

Today I should have walked down the aisle to receive my Masters in Communication Disorders. Today I should be starting my journey as a Speech Language Pathologist. Today I should have achieved my ultimate goal.

In 2013, I graduated from Eastern Connecticut State University with my bachelors in political science. But when I got out into the world and started working, I quickly realized that the field I had picked to pursue my career was definitely not for me! I decided to start working in different areas to really find what I wanted to do. Two years, my own home and a new husband later, I got a position working with special needs children and fell in love with my job. I especially loved the professionals that came in to work with them on their speech. I was mesmerized by their technique, passion and intellect. I knew right then and there, that one day I would be a speech language pathologist.

So I went home and started Google searching – “how to become a speech language pathologist”. I figured I already had a bachelors degree so how hard could it be right? I could not have been more wrong! The field of speech language pathology is one of the most competitive masters programs to get into! Not to mention, I had no background in the field or true experience. So, I made myself a master list and got to work. I got together my application, wrote my personal statement and submitted my lack luster GRE scores to the admission board at several different masters programs in Connecticut and neighboring states. Every letter came back as a rejection.

I didn’t give up. I applied and was accepted at the University of Connecticut as an undergraduate student, again – this time pursuing a bachelors degree in speech, language and hearing sciences. After just one class, I was validated. I knew this was my destiny. I graduated with my second bachelors degree from UCONN and I retook the GRE. I applied again. Another round of rejections.

I didn’t give up. I became a research assistant at the University of Connecticut, I took the GRE AGAIN – third times the charm (the GRE is by far, the worst standardized test in the entire world) and, thanks to my amazing mentor, I was able to enroll in one graduate level course in an attempt to show any admission board that I was capable of being successful in a graduate program! I applied again. This time, I knew I had put my entire heart and soul into this application. A few short weeks later, I received my waitlist letter in the mail to Southern Connecticut State University. I was in shock! My husband and I had sacraficed so much to get me into graduate school. He believed in me and I finally believed in myself. It was only a few weeks later that I got the final letter that I had been accepted in the class of 2019 Communication Disorders masters program!

I kid you not, it was one day later. The very next day, in the heat of a crazy winter storm that I took a pregnancy test. My jaw dropped. In a matter of a few short hours, I was told I was accepted into my dream program and that I was pregnant! But this news didn’t make me even skip a beat. I never questioned that I would finish my program. I knew that we would get it done. So, I spoke with my advisor that summer about how to proceed and was met with compassion and understanding. The school worked with me and went over and beyond. I took classes and read about apraxia and dysphasia and everything in between. I took 1,000 pee breaks and always had snacks at the ready. My classmates were wonderful and supportive. I gave birth to Olivia – you guessed it – the week before finals – she would have it no other way ;). My project groups waited for me to recover before presenting so that I wouldn’t be left out. We took Olivia home and I signed up for my next semester of classes – knowing that I have a wonderful support team at home – thanks moms 🙂 that would get me through the winter semester!

The day after the start of the spring semester was that faithful day. The day most of you have read about before – when the doctor diagnosed Olivia as legally blind in one eye, with a cataract and a rare condition known as Persistent Fetal Vasculature. After all of those years of studying, trying and failing, falling and climbing back up. It wasn’t until this diagnosis, that I finally broke. When we learned more about her condition and her therapy needs moving forward, I knew I would need to take a leave of absence from school. Her eye became priority number one. I did just that, with no issue at all. But then, as the Spring semester came to an end and the summer semester began another bomb shell was dropped on our family. It was last summer that Olivia was diagnosed with life threatening food allergies. It wasn’t until this diagnosis that I knew I had to take a step back and really look at what to do next. Olivia needed an entirely new kind of care now which meant big changes for our family.

It’s taken me this long to full accept the decision we made next. We knew the right thing to do was to keep me home with Olivia. This means that after everything we went through to get my masters degree, I lost my acceptance to SCSU. I have every intention of going back to school to finish what I started but until then, my new title is ‘Stay at Home Mom’. This decision is we one we did not take lightly – it took weeks to come to and many tears as it came to fruition but I can say with all the confidence in the world that we made the right decision.

When your child has something going on with them that could end their life, priorities and life plans change. Everyone told me that my life would change when you have a baby, and they were right. It’s changed in the best possible way.tx I would love to be Danielle Mikulak, SLP but instead I have the best title in the world: Danielle Mikulak, Momma.

I’m not a helicopter parent…just a mom

Food Allergies, Our Latest Adventures

With Toy Story 4 out in theaters, we decided to show Olivia Toy Story. She LOVED it and has been dancing with her daddy to “You’ve Got a Friend in Me” for days. So, in the spirit of fun toys that talk and play we decided to throw on “The Toy that Time Forgot”. I had never seen it before but it came free with our “Toy Story” purchase so I thought, why not! I’ve never been more disappointed in Disney than I was today…

Only 2 minutes into the movie, a scene plays out where the dinosaur is dressed up as a pretentious looking mother – pointy glasses and all. The dinosaur yells at the little girl playing the waitress that there is a bug in her sons ice cream and her son is “ALLERGIC TO BUGS”. So the little girl flicks the bug out of the ice cream and says “there you go sweetheart, enjoy”. And then the movie moves on.

In our world, food allergies are constantly seen as a burden and a joke. This scene does nothing but perpetuate this unfortunate view point. When a child watches this movie and sees this scene, they may learn that by simply removing an allergen from someones’ food, it is now safe. They may see food allergies as funny, simple and as a simple inconvenience. This scene in this movie does food allergies an extreme injustice – making a life threatening occurrence seem joke worthy and mundane. The mother who says her son has a bug allergy is shown as a know it all ‘helicopter’ parent and the waitress brushes off the allergy like the mom is simply being a pain.

At restaurants I am hit with constant dirty looks and hear whispers under their breath about how ridiculous I look wiping down the booths and chairs, bringing our full course meals into perfectly nice dinning rooms. I thought I never wanted to be that kind of parent – never wanted to be the ‘neurotic’ mom who keeps her kids in a bubble. That is until I became an allergy mom. My judgements are GONE. Now, I lock eyes with other moms who may be seen as ‘neurotic’ and give them a supportive nod. I want other people to know, that I am not being neurotic. I am taking care of my baby in the best possible way that I know how. Having food allergies in a world that uses them as the butt end of a joke is tough. When characters in movies laugh about something that could kill my daughter is heart breaking. But I know that Olivia is going to teach others about why this movie was wrong and educate others on how to keep her safe.

So, please talk to your kids about why this scene is so wrong. Simply removing an allergen from the food will NOT remove what makes kids like Olivia deathly ill. Removing that bug from her sundae would not get rid of the bug protein. I know – Im talking about bugs and pretend ice cream sundaes – but to kids, these stories are as real as they can be. And give that mom insistently wiping down the tables and chasing their kids around as much grace as you can, because you do not know what they are going through. So no, I’m not a helicopter parent – I’m just keeping my little girl safe.

In the meantime, just keep advocating!

When two disabilities collide…

Food Allergies, Our Latest Adventures

Olivia was born with two disabilities:

1 – Persistent Fetal Vasculature which has caused near blindness in her right eye requiring her to wear a contact lens and patch daily

2 – Life threatening food allergies to peanuts, tree nuts, dairy, eggs and wheat – resulting in strict avoidance of anything that may contain, contains or has come in contact with those ingredients, for fear of an anaphylactic reaction.

These two disabilities are pretty separate entaties. Both serious in their own way but also completely their own thing. Until today!

Olivia has been squinting her eye a lot these past couple days. At first, we thought she was squinting her eye because her contact was bothering her. But even when we took her contact lens out, she would still squint her eye. She even got to the point where she would say “momma”, get my attention, point to her Nemo eye and sign all done for me to take the contact out. So, we decided to take her in to see the lens doctor today – just to be safe. With everything Olivia has gone through concerning her eye, we never wait and see – we always get her checked out. Due to the nature of her condition, we are constantly on the look out for retinal detachment and Glaucoma – two issues that are fairly common for people with PFV. Anything out of the norm warrants a doctor visit.

When we got there, the doctor took a look at her eyes and was shocked at how well behaved and amazing Olivia was. She sat there, completely still, as the doctor shined a super bright light into her eyes. Since Olivia did so well, the doctor was even able to pull her up to a machine to check under her eyelid – there is no better compliment than someone saying “there is no way this little girl is only 18 months old!”

When she took a look under her eye, she saw little bumps that had formed due to….you guessed it…ALLERGIES. Because of all of the allergens and heightened pollen count outside, Olivia’s eyes developed these bumps that are making it uncomfortable to have her contact in. We were prescribed some allergy drops and a new cleaning routine for her contact lens. When we know the pollen count is high or during a change of season, the world we see a lot more Olivia in cute glasses so her eye has time to breath.

During the appointment, I said to the doctor that I can’t believe it’s allergies of all things. Now she has seasonal allergies affecting her eye on top of her food allergies! That’s when the doctor explained that Olivia suffers from something call atopy which is a “genetic tendency to develop allergic diseases”. Atopy is “associated with heightened immune responses to common allergens, especially inhaled allergens and food allergens” (AAAI). She explained that kids like Olivia are just more susceptible to allergies affecting them in more ways that one.

So, today was the day that both of her disabilities collided into one. But whichever we are dealing with on that given day, there is one thing I know for certain. My warrior daughter is going to show up with a smile on her face, a snack in one hand, her ‘baby’ in the other and a high pitched “HI” coming out of her mouth. She is the happiest, most resilient kid I’ve ever known and I am proud to navigate these uncharted waters with her. So even with a new contact lens cleaning routine, new eye drops and glasses a few more days a week, we will continue to just keep patching.