This is the Upsee its a harness made by Firefly Company. I LOVE IT!
CHECK IT OUT Online
This is Adam in 2013 and Adam in 2015
The progress is slow but its worth the wait.
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.
WE MADE IT TO D-land!!
It was a dream come true!
There were days when the thought of Adam at Disneyland was something I’d picture in mind just to get through a horrible day. (You know, kind of like how I refer to Hawaii).
Than I thought of it as a far out of reach goal. One day out of the blue I whispered under my breath,
“God, if this Your Will please make it happen. If this is meant to be help us because I do not see a way.”
Let me say He did it!
By an “unexpected gift” of 5 Disneyland tickets! Adam’s nurse was able to go and our hotels conjoined so when her shift was over she just went next door and when morning came I carried Adam to her room as we packed an prepped.
Some may ask how i know it was God’s. I know it was GOD’s plan because of this: the day we went to DisneyLand was the same day they celebrate Epilepsy Awareness Day!
We had NO IDEA UNTIL WE ARRIVED and saw the hundreds of people wearing purple epilepsy awareness shirts and they had Mickey on the front.
God knows the details of our heart’s desire.
First, I need to thank everyone who has prayed and offered their support to our family in anyway. The past five years we’ve been through ALOT and YOU have helped us through. Thanks to all the prayer warriors out there!
Keep it up!
After everything Adam has been through HE STILL SMILES. Truly there has never been a smile that shines so bright! To know Adam is to fall head over hills in love. It’s a special kind of love. One that he exudes generously to all who BELIEVE. It’s God’s love as innocent and pure as it could get, its direct from Heaven.
I’m his mom-so blessed. I wish him a happy birthday so grand even his little Deaf ears hear it. I wish him/ pray him more hours alert, more purposeful movement, more play and a stronger immune system to protect him on more family outings. None of these things money can buy. None of these can be put in a box and gift wrapped but just imagine when they come true! Imagine how good Adam will look doing them!
Yesterday we took Adam to church and held a special mass to give thanks for all he has overcome. Family and friends gathered and prayed and after we went home to have cake and icecream, including Adam. He had a wonderful time. Thanks Be to God.
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!!!
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!
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.
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.
Frankie and Adam
Things are stable. There is steady work getting done around here. Frankie is enjoying the week off with no homework. His teacher gave the students who finished their class work and homework on a regular basis the entire week of no homework! (now that’s cool)
As for Adam he is slowly trucking. He gets therapy four times a week. That’s always a relief. I think he’s tired of the bed because he just won’t sleep when he’s in it. He’s on an odd sleeping schedule. He’s awake all night and zonked in the day so I’ve been working with the night nurse to problem solve.
( fingers crossed )
Saturday that passed he slept next to me in bed. I am so fortunate!
How many people can say that they slept next to an ANGEL????
I CAN. It was the most peaceful sleep I’ve had in a long time. Seriously I’ve got to get an air-up mattress so we can camp like that more often. You know he slept all through the night? He only woke up for a diaper change. He didn’t wakeup until 9:00am.
Adam during an early morning therapy session