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You Can Do Hard Things – Finding Courage & Acceptance When Life Doesn’t Go as Planned

Life · May 2, 2020

You Can Do Hard Things – Finding Courage & Acceptance When Life Doesn’t Go as Planned

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Wishing the biggest Happy 13th Birthday to this young man. He is the sweetest kid, with the biggest heart, incredibly easy going, and always willing to help.
Watching a young boy who was once painfully shy now coming out of his shell with more confidence has been incredible to watch. Jake has been through and learned more about life in 13 years than most do in a lifetime. He is brave, honest, hard working, compassionate, and incredibly loyal. His smile continues to light up a room and his goofiness will make anyone laugh. To say I’m proud of all he’s been through and the young man he’s becoming is an understatement. He’s one in a million and am lucky to be his mom.

Jakey - You bring so much love and light into this world. The world needs who you were made to be! There is so much more to learn and explore. I look forward to watching you continue to grow and move mountains every step of the way. Keep being you!!! Love you buddy! ❤️

Pre-Op is DONE!

After 10 years of struggles and trying so many things to get my body in a healthier state, it’s time. Changing my diet and taking a more natural functional approach towards my health has helped make some improvements over the last several years but it’s just not enough. Sometimes conventional medicine/surgical intervention is absolutely warranted.

I’ve resisted it. I’ve felt at times like I’d failed in some way. In this moment I know with all my heart I’ve done everything I can. Sometimes you just have lean in and let go of what you thought life was suppose to look like. Opening up your heart and mind, allowing space for better days to come.

I’m feeling so many emotions today. I’m beyond grateful I was able to carry 4 amazing babies and I truly loved every second of it. So many others who have struggle with similar medical issues have not been able to. My heart goes out to all of the women who have struggled with this decision.

It feels weird and a bit sad to let it all go but I know it’s time. I’m ready to take positive steps forward to a new season of healing and improving my overall wellness.

T-minus 7 days! ❤️

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#womenshealth #courageovercomfort #hysterectomy #hysterectomyawareness #adenomyosis #endometriosis #chronicillness #lupus #gracefullyfierce #getwellbeingyou

What a weekend.

What a difference a day can make. What started out with fatigue and barely able to walk one time around the block, ended with a beautiful sunny day full of hope and more energy. Overwhelmed with gratitude receiving vaccine #2, for making it around the block twice, and having the energy to scream at the tv to Cuse getting an awesome win!

The boys: You do know you’re yelling buddy at a person who’s name really is buddy and really at a stationary object on the wall right?! I’m never watching a game with you again. You’re crazy!

Me: Yup, I got it. Just imagine me back in 2009 against UCONN with 6 nail biting overtimes!!!

It’s the simple yet impactful moments like these we will look back on and remember. Although we’ve had ups and downs and many days in between, I’m making the best of the extra time we have together.

Yes it’s true, we don’t know what tomorrow may bring. We never have and never will. Making the best of it - wherever you are, during whatever season you may be navigating through, matters most. ❤️

Your struggles are opportunities.

To Learn. To grow.

To share your knowledge and experience to create a positive impact on the life of someone else.

There is a greater purpose, if you just believe in your power.

One decision, one moment, one opportunity, one person sharing their story, can create an unimaginable ripple of healing and positive change.

Here’s to...

Growing.
Learning.
Showing Up.
Becoming part of the solution.
Making the world a better place.
Finding a purpose out of life’s most difficult struggles. ❤️

(Thank you @hopkinsmedicine for allowing me to be apart of such important work - research. Research that will provide answers and a better future for those with chronic autoimmune diseases.)
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Today is Rare Disease Day!

Why is that important – because awareness is everything.

Patients with a rare diagnosis often get overlooked and even when diagnosed they often have limited treatment options.

They require more care, more open-minded doctors, and more research is needed to improve their quality of life.

• 300 million people living with a rare disease worldwide
• Over 6000 different rare diseases exist
• 72% of rare diseases are genetic
• 70% of those genetic rare diseases start in childhood

Most people wouldn’t look at my son and believe we’ve lived through quite a challenging life. I often focus on the good, on what we can do, and how we can adjust to keep moving forward. But the dark days have been heavy. It’s been a very long mentally challenging journey of difficult days, searching for answers, and fighting a very isolating lonely battle.

Seeing life through a different lens can give others a different perspective, cultivate empathy, and create awareness that brings about change.

Mason, now ten years old, has fought to be seen, heard, and his life has been at risk since the day he was born. Having not one rare diagnosis but three, several other diagnoses, and developmental delays. To most he looks “normal.” This is the face of a boy who has

• Laryngeal Cleft
• Primary Immunodeficiency
• Primary Ciliary Dyskinesia

This incredibly difficult journey has brought me to my knees, tested me in ways I never could’ve imagined, yet it has given me so much.

A new perspective on life. A new purpose. To advocate for those who don’t have a voice, to create awareness, and encourage those who can, to use their voice to create change for themselves and MANY others.

Mason is sensitive, STRONG, full of life, and fights every single day to defy the odds and be the best he can be. I’m so incredibly PROUD I was chosen to be his mom.

Rare is MANY.
Rare is STRONG.
Rare is PROUD.

Alone we are rare. Together we are strong. 💖

So many emotions today. Concern, anxiety, and uncertainty, mixed with an overall sense of calm, gratitude, and hope.

I’ve held important treatment for Lupus. I walked into an office that led to a chest x-ray, another referral, and walking out of office doors on a Holter monitor. I then drove to our local Exposition Center to receive my very first COVID-19 vaccine.

“This is it. I can do this. I’m here. What a year it has been. I’m alive. There is hope. This is the start, the pathway to new beginnings.” Words I spoke to myself as I sat in my car before walking inside, followed by one hell of a teary-eyed long deep breath.

I need to keep going for my children. My children need the one person in the entire world who knows how to care for them like no other human being. Our youngest rare medically complex child can’t fight this fight alone. I need to be here. Most importantly I have to take care of me!!! The fight, the sacrifice, the isolation, the wait, it’s been incredibly difficult at times over the years. This year like every other time, it’s worthwhile.

All of our struggles are here to teach us something. Deep down I know I’m different and for the first time in my life I’m so incredibly proud of that. I’m here to do so much more than I ever imagined I could. I can be a part of changing the future for myself, for my children, and for so many others I may never get a chance to meet. I can’t think of a better purpose than that.

Here’s to love, to hope, to strength, to never giving up, and to making the world a better place.

💖

Wishing this special not so little boy the biggest double digit 10th Birthday EVER!

His day was filled with birthday messages, surprise doorstep gift deliveries, several Facetimes, and DJ lights & music filled our home. It was just the six of us but that’s the normal we’ve learned to adapt to.

Mason is truly a special little human. He has touched our lives and impacted the lives of so many more in ways he is simply too young to truly understand yet. He was born a fighter and shows up every day doing just that.

There are hard days when he has cried because school is really hard, and I hear him say, “Something is wrong with my brain.” But there are special moments when I overhear him whisper to himself while doing independent class work, “Mason, believe in yourself, you can do it.”

There are far too many days when he is run down or anxiously anticipating another round of weekly needle pokes. Days that pull at my mama heart when I hear “I can’t keep up, I hate this, or Why did this happen to me.” But then I’m there to witness moments of a young boy showing what it’s like to have courage. Wiping away his tears, taking a few deep breathes and then asking for what he needs. “Mom, no talking, I need everyone to be quiet, just give me a minute please. Once the needles are in can you please hold my hand until the burning goes away. I’m okay, it’s going to be okay.”

At such a young age he has learned lessons many adults have yet to learn. That life is hard and sometimes doesn’t at all seem fair but you should never give up. That you can and will wipe those tears away, stand back up, and move forward with strength you never knew you had. Through the tears and anxiety, he keeps fighting to be the best he can be. He has even begun to learn the importance of using his own voice to advocate for what he needs. We have our ups and downs and certainly very trying days at home. Despite our circumstances this past year Mason has grown and I’m beyond proud of him!

Keep smiling! Keep on fighting! Keep being that kind, creative, sensitive, spunky, music loving, outdoorsy, carpentry inspired, courageous human you’ve become. The world needs who you were made to be!❤️

• Trust your intuition.
• Seek insight from those who’ve walked the path
before you.
• Gain as much knowledge as you possibly can.
• Take action and become a part of the solution.

With grace and determination, use your wisdom to advocate for what you know in your heart is right.

✨No one is you, nor knows your child the way
you do. That my friends, is your superpower.✨

I woke up this morning with hope but surprisingly emotional. What a crazy uncertain season we are in. It feels so surreal.

I try to remain neutral as I know our children are watching and listening. My teens are also hearing thoughts/opinions from their peers. I’ve always said to shut out the noise and try not to let the negativity of others bring you down. Focus on what you can do to create positive change. To be brave, to be the light, to be the change you want to see in the world. Many times I’ve look into the eyes of my children who have sadly lost hope in their generation and the generation before them.

There was a lot I heard today that brought me hope. There is no denying that we are making history. That even in our darkest days there is and always will be good in the world around us.

My friends there was one person who stood out the most for me. There is so much we can learn from this amazing young women. I was in awe of her presence and her beautifully written words left me in tears. There were many amazing words she spoke but that last part, my goodness did I feel it.

“There is always light, if only we’re brave enough to see it. If only we’re brave enough to be it.”

@amandascgorman is truly an inspiration. She has given me more motivation and hope for our children’s future.

**correction** as IG doesn’t let you change pictures
so for clarification Amanda Gorman was the First National “Youth” Poet Laureate (there is a difference) & Youngest Inaugurate Poet in US History ❤️

Three years later and I remember this day like it was yesterday.

Calming his nerves, holding his hand, telling him everything was going to be okay, as they put him to sleep in a cold OR full of doctors and nurses. 8 hours of waiting and wondering if it was the right decision. It was an unbearable weight to carry.

I remember the first words that came from the Fellow who assisted, “It went well. He needed this even more than we knew. The amount of spinal fluid that came pouring out during the first incision proved there was far more pressure on his brain than we expected. He is in recovery and doing well. Be prepared he is on morphine and this was in fact brain surgery. It will take time and it will be a challenging few days and weeks ahead. You made the right decision.”

I fell into the surgeon’s arms and cried. All I could do is say thank you, as a heavy weight had just been lifted, I could barely breathe.

After a terrible experience being dismissed locally, I’m so beyond thankful for a team of doctors in Boston. A team that is open minded and bring together their entire team of Neurosurgeons for Grand rounds to review complex patients. They treat a parent’s experience and understanding as an important part of their team. What a great reminder this is to follow your intuition and never just listen to what any doctor has to say.

No one is you and that’s your superpower! You know yourself and your child best. Trust your intuition. Never let anyone dismiss your knowledge and experience. Do your own research. Push for answers even when it feels like the world is against you. It’s not the easy route but it’s certainly more than worth it.

I believe even during the toughest of times, things happen for a reason. In the end, brain surgery from one of the best Neurosurgery teams @bostonchildrens in the country was all we could have hoped for and more. We will forever be grateful.

#grateful #chiarimalformation #courageovercomfort #brave #followyourintuition #trustyourself #gracefullyfierce #yourvoicematters #lifelessons #patientadvocate

“Mom, how is Charlie and Santa going to make Christmas work this year? How will he be able to travel back and forth? Santa goes into so many houses. Will he be able to come, is it really safe?”

After a silent conversation with Santa, Mason told me he asked if somehow he could find a way for it all to work. Not to mention if Charlie could maybe come well, like tomorrow?! 😉

Santa and Charlie didn’t disappoint. It’s about time to spread a little Christmas Cheer! Elf Charlie Maxwell has arrived in style, even if it’s a little bit different to start this year!

Charlie has already S-Elf quarantined but to be a little extra careful he’s taking a few days to rest. With strict rules from Santa, soon his mask/cleaning supplies will arrive and he can start spreading his holiday cheer...sharing sweet treats, encouraging kindness, and finding creative ways to take part in his holiday shenanigans.

There is nothing like seeing smiles ear to ear and pure joy in the eyes of children. I’m soaking it all up for as long as I can.

May you all experience the pure joy and excitement of believing in the Magic of Christmas this year! ❤️
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#themagicofchristmas #believe #spreadlove #happyholidays #itsthelittlethings #kindness #makingmemories #immunecompromised
#flexibility #adapt

Please take a few minutes and consider donating Plasma!

Just a small glimpse inside the window of Mason’s 8 year Medical Journey wrapped up into 3:33 minutes. It’s been one hell of ride fighting for answers, endless testing, procedures, surgeries, and monthly, weekly, and daily treatments to get him where he is today. The isolation at times, the invisible struggle mentally and physically, have been a challenge to say the least. Add this pandemic and it sometimes feels like it’s all just too much. But here we are doing do what we can, the best way we can, to stay healthy and safe.

Sometimes focusing on what we can do is helpful. Having something to keep us motivated and makes us feel hopeful. I have one idea that’s not at all what your thinking.

It’s not wear a mask, practice social distancing, or wash your hands. I wholeheartedly support every one of those ideas. (Towards the end of the video you see 2 young boys that have done an amazing job doing so while supporting Mason through his summer infusions.)

But this idea is quite different...Donate plasma!

Plasma is used to save many lives with chronic illness, one in which our son Mason has. One of Mason's diagnoses is a Primary Immune Deficiency. Mason's body doesn't produce antibodies to vaccines nor does it produce enough immunoglobulin to fight off infections.

He has received IVIG (immunoglobulin through an IV) every 3 weeks w/ a nurse at home since 2013, shortly after turning 3. Since the pandemic, we had to transition to me learning and administering a smaller dose weekly called SubQ. Mason counts on these treatments every week to live a healthier life.

There is a shortage and we need your help! Find a Plasma Donation Center near you. https://www.donatingplasma.org/donation/find-a-donor-center

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