grateful – The Osling Chronicles

One Year.

March 3, 2021March 3, 2021 carinaos123

One year.

365 days.

So much can change.

A human can be conceived, grown and birthed. A whole new life entwined forever with a family in less than a year!

New jobs, new homes, new milestones, new losses. So many moments in just one year.

But what about the year where everything and nothing happened all at once?

Where events and moments were postponed so many times that eventually they were simply cancelled altogether. Families and friends kept apart. Lives adapted and molded to fit many different needs. Lives lost.

Too. Many. Lives. Lost.

Sure our family has had our changes too, a new home, a new business venture, the start of homeschooling. And yet, it feels like this year has flown by in it’s stagnant limbo. Whisking us away and at the same time forcing us to repeat the nightmare that is life in a global pandemic day after day.

The mind is a funny thing, making us feel like the world stopped spinning just yesterday while also making us question exactly what normal life was like? Like an alternate reality we look back at memories and reminisce about how it felt to be at crowded functions with loved ones without a second thought. Did we really appreciate those moments for what they were? Did we truly value them? A year later and we are still left processing the surreal nature of watching the tsunami coming at our lives with little power to stop it.

There are plenty of families who have shifted, adapted, and who continue to go about their lives with minimal interruption but what about the families left behind on the side lines? The ones, who like us, are forced to watch the world start it’s wobbly rotations again but who can’t quite be a part of it. The ones who scroll social media, watching friends take steps back into the world and wishing more than anything that they could safely do the same. The ones who’s fear of missing out pulls at the corners of their minds, stacking doubt upon doubt. Am I crazy? Am I hysterical? Am I making the right choice for myself? For my family? For my children? For my neighbors? No longer the loudest voices, so now somehow forgotten amidst the clamor for normalcy.

This year everything stopped and yet everything has changed: relationships, family dynamics, hobbies, jobs, lives. The word “essential” has taken on a new weight and our debt to these front line workers can never be repaid. For many of these heroes, life has been altered beyond recognition as they live separately from their children and loved ones to protect those they hold dearest from potential exposure. For far too many people, loved ones have been lost. The catastrophic, life altering events of this year cannot and should not be diminished.

Photo by Karolina Grabowska on Pexels.com

But what if we learn from this year? While holding those who have suffered loss close, honoring their experiences, and mourning their loved ones, what if we also choose to see what has been learned, no matter how small? What if we place value on the relationships that have stood the test of isolation and those who found ways to show up even when they couldn’t really show up? What if we focus on those silver linings no matter how faint to just pull us through to tomorrow.

For our family, that means appreciating the ability to slow down. To appreciate not being pulled in different directions, with distraction filled schedules jam packed until we barely see each other. To have three meals a day as a family. Movie nights, game nights and so many small moments in between.

I’ve held my crying kids countless nights asking when they can see friends and family or questioning if life will ever be normal again. Little voices asking questions prefaced by “after COVID can we…?” echo through our house like a skipping record. But I hope that when we look back, when my kids look back, they will know we did our best to follow scientific guidelines and the advice of those who know so much more than we do. They will know that we made the decisions that we felt were in their best interests at the time. That there was no handbook for parenting (or simply living) during a pandemic. That we chose not to live in fear, but instead in knowledge and love.

That we are human.

I hope that they look back on these days and weeks with an appreciation for what we did have instead of being filled with sadness for what was missing. That car horns and traffic remind them of car parade celebrations for birthdays that had to be adapted. That they are filled with warmth when they think of the many movie nights curled up together on the couch. That they remember their full bellies stuffed with goodies made together in the kitchen. That they remember having freedom to explore interests and adventures right here at home with those who love them most while we experimented (and fell in love with!) a whole new approach to education as a family. That they remember and value the PRIVILEGE we had in our ability to stay safe and isolated, at home, together, while many others were not afforded this same luxury.

But most of all, I hope that they will look back and know what it means to sacrifice for others. Not just for members of their own family and those they hold dear, but for the members of families they do not know. That they will look back and know that even at such a young age, they made sacrifices for the good of their fellow human. A truly difficult lesson to instill under normal circumstances!

Whatever that sacrifice looks like for you, for your family, for your kids…we have all had a year and it is time to give each other and ourselves the grace we so desperately deserve.

I Choose Joy.

June 25, 2019June 25, 2019 carinaos123

This week I spiraled.

Not quite a full tailspin, but just enough to knock me off course.

We watch our sweet L get sick often. We go to the pediatrician often. We consult with specialists often. This is our normal.

This week I had enough.

This week, I was angry.

This isn’t the normal I wanted. This isn’t the normal I expected. This isn’t the normal our 3 Os-lings deserve.

Sometimes, being told that we need frequent flier points at the pediatrician is enough comic relief to make me smile, to lighten the load of another appointment. But this week, it was almost enough to break me.

Sometimes, being told by medical professionals that our boy is a mystery to them can be taken as a compliment when I seem to understand him so well. But this week, it was daunting.

It seems we can’t go a week without a food reaction, fever, illness, infection or random GI upset. Since September he has faced over 20 fevers, most without known causes. Plus a slew of airway issues including pneumonia, bronchiolitis, and recurrent croup. He’s had a handful of double ear infections. He’s had food fails that lead to weeks of diarrhea and blood in his stool. He’s been diagnosed with reactive airway disorder since he is too young for an asthma diagnosis. He’s had medical testing and countless blood draws. He’s had hospital trips, multiple rounds of antibiotics, steroids and nebulizer treatments. For the rare week when I am not making the trip to the pediatrician, he seems to make up for it with double appointments the following week. Although I am always relieved when a test comes back normal, when another issue is ruled out, I can never quite take a deep breath. I can never quite shake the feeling that some crucial piece of the puzzle is being missed and there is something more we can do. It just can’t be normal for one little boy to be sick this much; to have so many systems in his tiny body work against him. Can it?

This past week I struggled. I struggled to face the fact that our lives aren’t always what we pictured for ourselves. That we have added complications that those around us may not understand. I struggled to explain our boy’s medical needs, repeatedly. I struggled with comments made even if they were with the best intentions. I try to be grateful for others who don’t “get it”, this just means they haven’t had to live it. I try to be grateful for the opportunity to educate others, but it is exhausting to rehash it all like a broken record. This week though, despite the smile painted on my face, I was bitter.

I was not okay.

I struggled to see the silver linings. I struggled to see the blessings. All I seemed to notice was how unfair this hand we’ve been dealt can seem.

I know in my head that as time passes, he should improve. All of the doctors have told us this and the research is there to back it up. In my heart, I dream of the day when these concerns are behind us but dread his growing up at the same time.

So this week I chose to take action. I choose to reach out to all of his medical professionals and see what else we can do. I choose to revel in little L’s sweet smile and big brown eyes. I choose to soak in his sense of humor and vibrant personality.

I choose joy.

In those moments when I feel robbed for losing these precious fleeting moments to anxiety and illnesses, I will choose to be grateful that we have him to hold and love. That we are lucky enough to have this precious boy as our son.

In those moments when I want to scream into my pillow and crawl into bed in defeat, I will choose to pick myself up, put on some music and have a dance party with our 3 crazy Os-lings.

In those moments when I feel the pull of Google and the allure of a research spiral, we will head outside to play away from screens.

Finding the silver lining is hard. It doesn’t come naturally. When you are forced to be the medical advocate for your child, you start to only see the medical issues. This week I am choosing to see beyond that. I am choosing to take our lives, our summer, our fleeting precious time back.

Our little L is so much more than his complex diagnoses and it’s time that our life is too.

Silver Linings

June 4, 2019June 4, 2019 carinaos123

On this FPIES journey with our littlest Osling, the clouds can be overbearing and the silver linings scarce. Through the anxiety, analyzing, waiting, watching, documenting, traveling, prepping and planning so much is missed in day to day enjoyment.

We worry about L’s health but we also worry about our girls. Are they getting enough of us? Are they sacrificing too much because of his medical limitations? Are we missing out on moments with them, despite our best efforts, because of the all-consuming beast that is FPIES?

When we take a minute to slow down, to watch the sibling relationship that has developed since L was born, we realize how much empathy, compassion, awareness and understanding K and A have gained on this journey.

While we seek to raise awareness outside of our family, we are confronted with the harsh reality of ignorance from many. Ignorance of food allergies in general, lack of concern with learning and quite honestly, hostility surrounding changing their actions to keep others safe. While we see so much darkness in the world while dealing with our son’s condition, we are surrounded by so much light from our girls.

Who knew that at just 4 years old, A could successfully list all 13 trigger foods and all 14 safe foods L has, as well as what is on our list to trial next. Who knew that at 9 years old, K would know about cross-contamination, hidden ingredients and the danger of non-food items for L. With each diaper A asks, “is that a sick poop mom or a happy poop? Do you need your phone to take a picture for the doctor?”.

Although I wish that they didn’t have to worry about their brother’s health, I am so proud of their awareness and devotion to keeping him safe. I hope and pray that this commitment to their brother expands to others they meet throughout their lives.

That they learn about all sorts of differences, abilities, challenges, and strengths and seek to help others around them rise.

That they realize that equality and equity are different. Equity doesn’t mean that everyone gets the exact same thing, but instead that each person receives the assistance they need to create an even playing field.

That they internalize that different abilities does not mean less capabilities.

That they find ways to help others the way they help their brother.

That they are willing to make sacrifices to their convenience, for the safety and well being of others.

It’s true that FPIES has taken a lot from our family, but I choose to see all of the blessings it has opened our eyes to, all of the lessons we have learned. Those small changes our family has had to make in an effort to adapt to this new and confusing life, have set the stage for life lessons for our children. For that I am grateful.

Not being able to eat in the living room seems like a small inconvenience but it teaches them not to eat in situations where others suffer from allergies or to make substitutions in the food they chose. They are learning to make sacrifices now to help others. To empathize with those who already feel left out and have challenges to deal with themselves.

Celebrating new passed foods seems like small wins now, but that will translate to seeing each individual’s accomplishments and celebrating just as loudly for others as they do for themselves.

Keeping a watchful eye for crumbs that pose threats to their little L, will transform into looking out for others in their lives and an innate willingness to jump into action when needed.

Understanding that some foods are strictly for L and are not to be shared because his diet is so limited and frankly expensive, will eventually manifest as an understanding that giving help and necessary accommodations to those who need it is not favoritism. Instead, they recognize that having those foods for him is just as necessary as the cabinets filled with food for them. Keeping things “fair” means he gets specialized food and they celebrate that with us.

Recognizing that attention spent on their brother is not attention lost from them. As they grow this will reconfigure into seeing that their strength and ability is not lessened by helping others. Small sacrifices are in fact part of being strong and independent.

Making sacrifices when L is fighting through a reaction and having to adjust all previous plans, will become an understanding of invisible illnesses and disabilities. Understanding that sometimes, we have to adjust to support and be there for those who need us most.

I pray that these lessons follow them. That small seeds have been planted and will flourish over the years. I pray that we can continue to support our little L and become stronger as a family unit while recognizing every fleck of silver lining this journey has brought us. I pray that our daughters look back on this journey with appreciation for the early life lessons they have learned while recognizing that we always tried our hardest to give each of them what they needed. But most of all, I pray that this sibling bond, forged through years of bickering, and laughter, never falters and that they learn to help and rely on one another for the rest of their lives.

To learn more about FPIES and follow our little warrior’s story, check out his Facebook page Living La Vida Lucca: https://www.facebook.com/Living-La-Vida-Lucca-2369903016563479/?tn-str=k*F

Follow the Osling Chronicles on Instagram @osling_chronicles for all of our little Oslings’ latest adventures