Sunday, September 8, 2013


My motto this week is, "life is like a rose;" Life is full of beauty, color, diversity, but boy those thorns hurt when they prick you.

Hello - Well Bryce was fitted into his leg braces Friday 9/6/13. That was great to learn about. He should be getting into his standing device in a couple more months. The goal is to help prolong the development of curvature to the spine and other issues with his legs/hips/feet. Since muscles don't work like they should, the doctors have founds activities, range of motion and new devices to guide us parents and the children as they grow.

I love living in my new neighborhood. Met wonderful people already.

I've started working on my  photography again - My goal is to get JA studios restarted for next spring exhibitions and art classes. Taking photos of friends and family is helping me make a little extra for Bryce and I.

It is wonderful to be able to go to the lake, walk downtown. Bryce just loves his new room. We are so grateful to be able to stay with our friend through the winter -  .  Bryce has really enjoyed getting into a new routine - he is getting some physical strength back since the hospital in June - He lost the ability to speak - but he can motion sign language much better with the help of the nurses - "more" "please"  nods yes and no.  He motioned "mama" a few times this weekend.  I love that he is laughing and smiling again. He has my laugh for sure - That's probably because of how much time we have spent together- Living in two different homes I think was a very hard adjustment for him and took a pretty big toll on him -

  Bryce loves to dance. That is one thing he and  I  surely do have in common, air drumming and dancing - we don't care  how silly we look, we just have fun. He started drumming really well this past week- he likes the tambourine as well.

 I love spending time with Bryce!  He loves being with me. It is sad when he cries going back to daddy's.  Joint custody has been  a huge adjustment for us. Separating after 10 years has its challenges- with faith, friends, family,  I can lift my spirits more easily, stay focused and look forward to the future. I will cherish the many good memories and look forward to making even more..  Most importantly each day with Bryce is a gift

 I strive living life to the fullest, and I enjoy each and every moment. Listening to the Sierra Leone Refugee All Star's album "Rise and Shine." If there is a band out there who knows the meaning of picking oneself up and moving on- it is them.

Love and Peace to all

Monday, September 2, 2013

End of Summer

Bryce is a such an angel! Quite a curious young man these days. 
We enjoyed our visit with Claire and Jasper very much. They are quite the pair -playing together and enjoying each other's company. 
 Little Bry By seems to be adjusting well to his two new homes, although he does cry when we say goodbye - but he seems to understand see you soon. He loves his mamma and dada.
I think it was very hard at first for all of us, mostly for Bryce - but I think he knows the new routine and he knows he gets to be with both parents pretty much equally split.
Left: Bryce in new EZ stroller. Thanks Families of SMA for the loan.
Right - having fun in the car.  We do have to have two people in the car at all times now, and this makes sense - it is standard for children with respiratory issues (SMA) to have a nurse or someone in the car for transport /car rides to appointments etc.


Bryce loves to play outdoors as well. He picked some leaves and petals and put them in containers. Then he likes to take them out and put them on the ground.

Loves playing with balloons. Watching them go up to the ceiling, he laughs with delight


Wow, this wind chime is awesome. I can use both hands to move this.

Look mamma - I have a new square ball. Its purple.