lessons from church…….

"borrowed" from St. Matthew's :)

“borrowed” from St. Matthew’s 🙂

Yesterday me and the boys made it to church for the second week in a row! That, in and of itself is pretty miraculous. Between running after a two year old, and stepping out to suction Isaac I was able to catch the majority of a pretty important sermon – one that seemed to speak to US.
Yesterday’s sermon was about scars…. which immediately caught my attention. We deal with a lot of physical and emotional scars when it comes to Isaac. His physical scars each tell a story, and Greg and I can tell you the story behind each and every one of them. The emotional scars are also very important, as we all have them at this point.
At any rate, Reverend Anne was speaking about the scars Jesus still bore when he came back to earth – the main focus of the sermon was those scars. As she pointed out, it was Jesus’ scars that made him recognizable, even though he had been resurected, he still bore the scars of his journey. He was human, and he had scars – nobody promised him an easy life, but he had LIFE.
In much the same way, Isaac’s scars make him recognizable. They are a part of him and his journey, and just because parts of him are healed doesn’t mean he shouldn’t carry the scars. The scars have allowed him to LIVE, they have given him life. He is not more or less human because of what he has been through.
At the end of the service yesterday, as the band played, Isaac and his cousin headed out to dance in the aisle of the church – and to see him dance is such a blessing in itself. Isaac has life, and he appreciates it. He knows pure joy, maybe it’s just because he is five, maybe it’s partly because of those emotional and physical scars. Maybe he has been scarred so that he CAN know pure, uninhibited joy…… if you’ve ever seen that amazing grin when he is dancing with such wreckless abandon you will totally understand 🙂

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farm life :)

This week, Isaac started a new therapy… on horseback! It is technically called “hippotherapy”, horse therapy. It is great for building core strength and is used as a tool for occupational, physical and speech therapy – kind of an all in one therapy.
We found an amazing farm not too far from our house, they are open to special needs kids (the owners themselves have 3 at home). The farm itself is remarkable – they have beautiful horses, play areas for siblings, and a carriage house with treats and Wi-Fi for families.
Isaac is very lucky to be working with Muriel and a team of volunteers/therapists who are so in tune to special needs kiddos. Once he met his horse they got him right into the saddle. He was so very proud – we knew immediately that this would work for him. He learned how to get his horse to go (“walk on, Lacy”) and how to get her to stop (“Whoa”).
Watching him was pretty amazing. Watching this team of four people who were working so hard to help him was also amazing. This family saw a need, a need for special needs kids to have a place to go – and they filled the need. Because they filled a need we got to watch our beautiful boy very proudly ride a horse around a ring. His beautiful smile spoke volumes, we can’t wait to go back next week.

Our rider!

Our rider!

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lessons in t ball

tballisaacA little while ago two of my friends suggested we should sign Isaac up for our local Little League’s “challenger” division. This is a very special division of the little league, it is for our special needs kids. Kids with health issues, kids with developmental issues, special kids. We thought about it, and almost didn’t – Isaac’s physical therapist told me last year that he didn’t need a special needs team, from a physical therapy standpoint he could participate on a “regular” team.
We decided to put him in the challenger league, this is his first time ever playing an organized anything, and we thought he could use the extra time to figure it all out.
Putting him in this league turns out to have been one of our best decisions in a really long time. What an amazing group of coaches, athletes and parents. The kids have a blast, and everyone else does too! There are only games, no practices. The games are two innings – everyone gets to bat.
It is chaos, to say the least. At any given time you can find the opposing team running the bases with the at bat team, there is dirt flying, untouched bases and LOTS of base stealing 🙂
It might be the most beautiful chaos I’ve ever seen. These kids are champions, they fight to overcome every single day. They understand what it means to win, in a much deeper way than the rest of us.
During these games everybody cheers for everybody. EVERYBODY CHEERS FOR EVERYBODY… we’re playing another team, but they are our friends, they fight the same battles that we fight, they live some of the same isolation that we live, they spend too much time in therapy and not enough time outside being kids. There aren’t many instances in life where everyone cheers for everyone, where we like our opposition and want them to succeed too.
This is what is remarkable, this is why we are so grateful that we chose this league for Isaac. He is where he belongs. He is having fun, there is no pressure – there is just love. He cannot wait to get there every week, he is loved and accepted and he has FUN!

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life with Isaac – OUR messy beautiful!

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It’s been said before – Isaac is not just mine and Greg’s, he is OURS. Our friends, families (friends that became family), doctors, therapists, Little Gym coaches, nurses, teachers, school staff – he is THEIRS too. In all honesty, Isaac is just too much to keep him to ourselves.
He is too much joy, too much resiliency, too much love and too much forgiveness. He loves HUGE. He loves everyone and everything. He finds love in every situation. Isaac exudes love. He shares his love with everyone – via that beautiful smile, huge hugs, high fives and kisses (reserved for his mommy and daddy!). He doesn’t discriminate, it doesn’t matter if you’ve poked him with a needle, held him down for a feeding tube to be changed, put a new trach in his neck, or wheeled him into the operating room – he still loves you.
Isaac is beautiful BUT messy 🙂 If you’ve spent time with him you’ve more than likely been exposed to his messy in some form. He often coughs huge loogies from his trach, often catching them with his shirt. Every so often his feeding tube pops open and contents of his formula spill everywhere.
Sometimes he is less obviously messy. He is medically messy, he truly is. Most of the time we are guessing what is wrong with him, we see a variety of doctors on a fairly regular basis.
He is therapeutically messy, mostly because of all of the surgeries and procedures we have put his little body through. BUT in the end he is OUR mess. He has a team of doctors who are constantly searching their medical knowledge for answers, and a team of family and friends that are regularly praying for those answers to come.
Our beautiful mess is a beautiful blessing. He has taught us that when there is no longer anything like “date night” (who wants to babysit a kid with a trach and a G tube?) we spend a ridiculous amount of time with our family and enjoy every moment. There are a litany of things that we never dreamed of doing, that we actually can do (trach changes on the living room floor? Yes, we do that!). When we are so exhausted we don’t think we can take another minute (think 2 straight weeks sleeping in a “chair/bed” in a hospital) he smiles the most amazing smile and we forget the sore neck and back, just for a minute.
It is truly and amazing journey with our Isaac, one we never envisioned when all three pounds, three ounces of him burst into this world…. we are grateful for him and the beautiful mess he made of our lives.

http://momastery.com/carry-on-warrior/
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He’s back :)

fun weekend!

fun weekend!


Sometimes our five year old seems to “get it” better than the rest of us. Friday night, as we drove to speech therapy Isaac and I were dancing and singing in car. In the middle of our song and dance he stopped and caught my eye in the rearview mirror, he smiled and said “I’m back”. Those two little words summed it all up, he’s back.
He’s back home, where he should be. He’s back to singing and dancing the car, like he should be. He’s back at school, where he is loved. He’s back.
Sometimes we get so wrapped up in the medical piece of it that we forget about the 5 year old. We forget how much fun it is to sing and dance in the car. Or how much fun it is to go to a friend’s birthday party and get your face painted – for the very first time!
When we least expect it, Isaac gives us reality checks. If we are too caught up in the drama of Isaac he reminds us to enjoy his health. If we are enjoying his health too much he reminds us things could be worse. He is a balancing act, and he balances us.

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