from graduation to hospitalization.....

Owen graduated from preschool this week yeah.......next day we landed inpatient for dehydration..... All my mito mom friends can tell you as well summer is the enemy for most of our kids. Owen is having a hard time regulating his body temp and can't cool down easily. He will go outside for 10 minutes and sweat for a good hour after causing him to lose alot of fluid. We are looking into getting him a cooling vest so he can play outside a little bit. I am trying to pick a school for Owen for next year and this has become a real challenge. I would love a private lutheran school but alot of them do not have enough resources for kids that need extra help. The public schools offer that but the class sizes are so big and Owen would get lost in the crowd. I am glad I have the mother I have at times like these, we can both be hmmm a little vocal at times. I can fight the fight to do what is right for my children and people usually listen. It seems MY daughter has that quality too.....god help me!

Happy Mother's day

I am finally realizing why we learn certain lessons in life and why we have the parent's we do. As I was growing up my mom represented strength and wisdom to me, with that no nonsense kind of love. I remember going to her work and feeling so proud of all she did there. My mom lead a group of nurses like no other, she offered mentoring support to everyone and changed lives. I remember sitting on her bed watching her get ready to go out with my dad and thinking wow is she beautiful. As I grew up and became a teenager my mom gave me my own identity but made sure I knew SHE was the boss. I now know during these times my mom struggled with depression, taking care of her sick mother and working full time. I would have never known because she made all look so easy. In my child eye's I thought everything was great and never realized how much she went through. My mom didn't bake cookies, wear an apron or attend to my every needs. She gave me something else I would need later and life, strength and perserverance. I did not know I would have a child who would be sick. I know she gave me the tools I needed to be able to take care of him and not feel sorry for myself. It's funny I look in the mirror and she looks back at me now. I am slowly evolving into her and that makes me proud. Happy mother's day mom, I love you!

My heart is full of love!

I know it's been awhile but I have been working through some things. Today I want to talk about my amazing group of family and friends who came out and walked for the MDA in honor of Owen. I am so proud to be part of this circle of people, they are awe inspiring! I finally feel like I am making a difference in this world and working towards a brighter future for Owen. I fell into the MDA and am now welcomed into a whole new family fighting to help cure neuromuscular diseases. My beautiful boy had a grin from ear to ear today as Owen's team Super Mario walked to raise money for his cause. This illness has brought me friends I did not even know I had and closed in my circle of the ones I did have. Today made up for the previous one, and the one before that,etccc....My last few weeks have been a struggle but not today,not today! My heart is full of love and I am too...