Highs and Lows

The past two weeks have found us experiencing some incredible highs and some definite lows. I want to start with the highs...

Camp John Marc is such a magical place. For the fourth year, we have had the honor of attending The Our Children's House Family Retreat. Our Children's House is the therapy Facility where both kids attend therapy. We first walked through the doors of OCH 12 years ago when Alex was 18 months old. The staff is like family to us. For 12 years we have walked into those doors multiple times a week and I have watched my babies fight with determination and perseverance. I have watched them triumph and gain skills one thought impossible and I have watched them receive SO MUCH LOVE! The staff pours so much dedication and hard work into these kiddos. And so once a year some lucky families get to attend family retreat. It is a weekend of zipling and arts and craft, of stargazing and making smores, but mostly it is a weekend of acceptance. I weekend surrounded by families who come from all different backgrounds, all different races, all different diagnoses, but who come together and share the common bond of a life that isn't quite what we thought it would be. There are familiar faces and new faces, staff who take their weekend to volunteer so we can have fun and make memories as a family. It is a weekend we look forward to each year to reconnect and enjoy what matters.

The Entrance

Sleepovers are fun

Ready to climb

At the top

Ziplining

Heading "home" to our cabin

I love the way she looks at her boy!

Add caption

Arts and Crafts

Swim time

Chapel Service

The chapel is my favorite place at camp!

Lap Dog

In other good news...Maddy is continuing to LOVE both school and Dance. She is so excited each morning to wake up and head out on her adventures. She is thriving in school and we are blessed with the most loving, kind, compassionate teachers and director. She is also making big strides in therapy since getting her feeding tube. Nutrition her body can process and absorb has made a HUGE difference for her. 

The not so great...  Overall Maddy is doing well, but her endurance and Immune system continue to struggle. 

Alex is not in a good place medically. His GI function has continued to decline and is leaving us with some brutal decisions about treatment. He is not feeling well overall and feeling poorly and not being well enough to get out and do what he wants coupled with the anxiety of what's to come is taking a toll emotionally as well. 

Please pray for this sweet boy and his spirit as he struggles with decisions no child should have to make. Pray also for this Mama whose heart breaks for her boy. Pray for guidance that we hear the doctors and make the best decisions possible.

Ali