Sharing stories of fear, frustration, hope and acceptance

Archive for the ‘Encouragement’ Category

The Calendar 

The weeks are long, like a blur. The days go by. The clock ticks louder and louder. I finally got Adam to the right doctor. I finally found out why he was so tired and struggled to even keep his eyes open. I finally had my answers, and it’s not good news. Adam was diagnosed in Summer of 2017 with Renal Dysplasia, as I understand it, it means his kidneys are too small. This can occur in children like Adam who are born premature. He now has stage 3 renal failure and in April of 2018 he was hospitalized and received a blood transfusion. This is when the clock began ticking.. Tick tock… Tick tock

The blood transfusion that should have lasted 120 days only lasted 2 weeks. So than the doctor asked us if we wanted to try shots of medication that would possibly cause pain in his bones or as it was being administered through the site. Shots would be 1-3 times a week. Pain? This is different from your average sting of a shot, we declined to give it. 

Since than Adam’s hematocrit and hemoglobin have declined significantly. Leaving him pale and puffy and so very sleepy. As the clock ticks the calendar doesn’t look the same. 

 

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The Tortoise and the Hare

  

  If having a child with special needs is really a race than I wonder… Am I the Tortoise? Or the Hare?

Somebody warned me once about pacing myself in this long race. They warned me that I would burn out, definitely more than the usual parenting circumstance. I heard the warning but didn’t listen. Even right now in this very moment I find myself in a dark, quiet room and I still can not sleep. I still can not shut off and relax. I’m not sure if this is a culmination of all the lack of sleep or if I should go see my doctor. It’s probably both, but there is just too much to do, between being Adam’s night nurse and mommy advocate during the day it’s getting hard to deny the importance of proper sleep and good nutrition. I’m one of those; the kind that go, go, go so I guess that makes me the Hare.

I have a plan: rehabilitate, restore, reroute. These are all words I associate with Adam and his recovery. I see the potential in him and though I have a team of support I can’t help but still feel a heavy sense of responsibility. It feels as if Adam is up against a clock of some kind and when time runs out that’s it. That’s how he will stay and all the people who didn’t believe in him would be right. I can see their smirks right now.  I can hear them say “well there’s just not enough progress”.. Dismissing ALL the progress he’s made. Progress like breath on his own or pee on his own. I found myself saying “slow and steady wins the race.” That’s how I’d describe Adam as the Tortoise because he could care less about what “they” think. He does things in his time, in his way.

I know that sometimes, maybe most times you can’t make others see or believe what you need them to. I know I’m hanging onto a promise that God shared with me, I know the potential Adam has and so I push, I advocate, I cheerlead him through it, fingers crossed his new physical therapist will too.

Perhaps Adam being the Tortoise and me being the Hare (THX SUSAN!) 🙂 means we are running this race together and in the end my Tortoise will win the race.

Upsee, Upsee and Away!!

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This is the Upsee its a harness made by Firefly Company. I LOVE IT!
CHECK IT OUT Online

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This is Adam in 2013 and Adam in 2015
The progress is slow but its worth the wait.

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This is US LATELY.
(One of my favorite pictures)
Adam will be playing Baseball in Spring with League Of Dreams. Frankie will be his “Angel”.
An “Angel” with League of dreams means Frankie will assist Adam during the baseball game.

Things to do; Places to see

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So much fun is happening around here! FINALLY!!!! We are continuing to reduce seizure meds on Adam. It’s been a long year and FINALLY Adam is slowly showing consistent, positive responses.
He is more attentive, his eyes are wide awake and smiles/ smirks more often, he is re-learning about peek-a-boo and patty-cake and bubbles.

He has a new dog named Mia. Mia loves to be by Adam mostly when he takes her cruising in his wheelchair.

Adam has gone HORSEBACK RIDING!
Yes! See picture to prove it!
He started horse riding therapy.
His first time was last Tuesday.
Watching Adam ride away on the horse (of course with therapists all around him) was one of the highlights of my life. I felt like I was letting him ride off into the sunset, to land of pure happiness. As I stood there I realized this precious moment in life had taken my breath away and I could only whisper, “GO ADAM GO” as tears of pure blissful joy skipped merrily down my cheeks. It was the BEST PLACE THIS CHILD HAS EVER BEEN. Can’t wait to go back.

He lost a tooth!! A TOTAL SURPRISE!
Thank goodness the nurse was with him and calmly went fishing for the missing tooth. I would have freaked!

Let see… What else…
Oh. The park. Adam also went to the park with his big brother Frankie.

Adam is truly turning a corner.
Each day I’M SO SO THANKFUL TO GOD. Words don’t describe. He is making a comeback… More and more this Adam resembles “old-Adam”, “healthier-Adam”. I’m realizing that he never left…. Adam’s personality NEVER left. It NEVER changed. It was/is there for the unveiling. I am more hopeful and more determined.
LETS DO THIS ADAM!!!

I’m That Mom

In the days shortly after Adam and I returned home from the eight month hospital stay life as we knew it was so different than before. Adam was so sick, I didn’t know exactly how I was going to get myself or him through it. His health was extremely fragile. I had to learn not only how to operate complicated equipment but how to be efficient with the two hands I have.
Thank God we have a nurse accompany us on doctor appointments. In the beginning I remember thinking, wow I’m “that mom”. It’s going to take me 20 trips just to load the van and four hours to get ready. Yup. I’m that mom. The mom who is pushing through what from an outside perspective looks like a mother’s nightmare. Pushing through all the un-thinkable things that come along with being a parent of such a medically fragile child. I’m “that mom” that has a sign on her sons wheel chair: “My momma says I’m special”. Just to state the obvious. YES MY SONS A HOT MESS BUT IM STILL PROUD OF HIM. Or when things go wrong and I know good and well my hairs a mess and my make-up… Well what makeup?? Some days there NO TIME!!
Yeah I’m that mom. I’m the mom that pulls out a big ziplock bag of ten different meds to give my son and have coffee with a friend at the same time. I’m that mom.
His health is still a complicated situation but at least now days there’s a calm that he exudes. These days he smiles more. 😀 there are less and less hospital stays and these days I’ve reached a place of acceptance that allows me to smile a true smile of gratitude as I push my son in his chair. These days being “that mom” is starting to take on a different meaning. These days I’m in a place that has allowed me to give myself the time and chance to reach out to other moms just like me.

The other day I went with a new friend and her son who is just like Adam only 15. It was an extremely rewarding good time. He (just as Adam) is such a joy to be around. It was so wonderful to observe his mom doing ALOT of the same things I do as Adam’s mom. It reminded me the importance of reaching out. I know I’m not the only mom in this situation but sometimes it feels that way. Parents like us have to try harder and search farther in order to find others in similar experiences. This new friend showed me I’m not the only one. She showed me an example of what 15 years worth of positive relentless hope, faith and endurance can add to life and she has no idea that she’s “that mom”.
To her I say, you are “that mom”.. You should be proud!

Learning to Dance

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Life isn’t about waiting for the storm to pass.. It’s LEARNING TO DANCE in the rain.

Adam is doing better these days.
We went on our first trip OUT of town
for THREE days and two nights!

It was a serious mission. With out our family there to load, unload, help with transferring and changing Adam, Joey and I would have been wiped out the first hours. We were so nervous we’d forget something important but we have learned the more we do with Adam the easier the tasks become.
For example: after going out of town for three days going across town seems way much easier.

As for the trip: it was my baby sisters wedding so we were excited to be there. We all followed invitation instructions and put on our best formal attire. 🙂 even Adam. He was so stinken cute in his suspenders and bow tie!
Side note: the picture of him holding a beer bottle is a PURE therapeutic attempt. It was cold and he held on to it so well! There was no way I’d interrupt. This is something the therapists have been teaching him. The funny thing is that he chose the beer bottle.
(Thanks Uncle)

The highlight of the trip was that WE DANCED! I can’t tell you how many times I thought about/day dreamt about dancing with my boy at the wedding. Far far away from hospitals or any worries of illness or health.
It was during cocktail hour and I had a cold bottle in my hand which made my hand cold so when I grabbed Adam’s hands to dance he moved away from me. So I let go. He told me he wanted more when he picked his hand up, all the way up using his shoulder!
Up and down, up and down his little arm went. I held on to his sweet little hands and we danced. Our version, his way, his time. All the cousins, aunts and uncles gathered around and we all witnessed Adam’s dance. Yes he was sitting in his wheelchair but that didn’t stop him from taking me miles and miles away from every worry.
It was one of the most precious memories of my lifetime.
I was so happy.
This is why I work SO HARD for him.
This is what I want for him. OPPORTUNITY.
The opportunity to smile and engage with those who love him, those who wait so patiently for his return.
THAT’S WHAT IT’S ALL ABOUT and
that’s how we dance our way through storms.

No Where But Up

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Thank God for Adam’s team!
His team of nurses, therapists, family members especially big brother Frankie, even doctors have given Adam support in countless ways.
There is a saying “it takes a village to raise children.” In Adam’s case it takes a whole country. Either way as the medications come down he becomes more and more awake. In fact; TODAY WAS ONE FOR THE BOOKS! During therapy he was actually smiling at me! It wasn’t a huge smile like the old, but a smirk. There was a twinkle in his eye and a smirk on his face. There was even enough wiggle in his fingers like he wanted to grab the toy. Put it all together and it screamed, “I’m in here.
I see you. I enjoy this moment.”
For that; my mother-heart can feel at peace. (whew.. Exhale)
Soo happy.