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Friday, August 4, 2017

Giving Madelyn a Voice

Over the past year, I feel that I have been given a platform and duty to give Maddie, and kids like her, a voice.  As I shared one year ago, I was asked to write an article for Minnesota Epilepsy Group and Children's Hospital of MN.  This was a wonderful opportunity.  In January 2017, we were approached by Children's Miracle Network as Madelyn was asked to be a hero and brand ambassador for the next year.  Again, this was such a gift to our family.  Last week, I was extremely honored and surprised to be asked by Ron Kind's office if I would speak at a press conference with him regarding healthcare accessibility and affordability, as it pertains to children with special medical needs.  Needless to say, I was shocked.

We've done a few CMN events so far, and I have to say that I leave each event feeling more empowered than the last.  I give our family's speech in front of the 100 or so people at said banquet, and I feel supported.  I am becoming more and more comfortable sharing Madelyn's story.  And, I am also seeing the good that comes from it.  There is such a need for people with disabilities to be better understood, to be included, and to be supported in society.  After each speech, I have had community members approach me thanking me for sharing our story, and more importantly, thanking me for the greater understanding that they now have.  I can literally feel people's compassion and acceptance grow in that room.

Thank goodness I had had these positive CMN experiences as my foundation to public speaking.  When a congressman asks you to speak at a press conference, you don't say no.  :)

Below is the 23 minute, unedited press conference.  I speak from 7:10-10:08 if you want to skip ahead.



I am so thankful for these opportunities, and I look forward to what is it to come.  I'm confident that this won't be the last time I climb my platform and give Madelyn a voice.  

Thank you for watching!

Monday, May 15, 2017

She will teach them....

Madelyn is wrapping up her first year of school as an Early Childhood student. Last fall, her extensive IEP was written.  One of the therapists on her team wrote "besides her above mentioned challenges, Madelyn also has many gifts".  She went on to write "she will teach them about patience, gratitude, love, and compassion".  This was written in reference to Madelyn's impact on her classmates.  However, anyone who knows Madelyn would agree that she teaches this to everyone she meets.  This was one tiny section of a massive document, but it has stuck with me all year and I constantly find myself repeating it in my head. That sentence sums up how Madelyn has shaped us as parents and as people.  That sentence also is a beautiful description of how she's been received by her classroom and school community.

As a parent, it's hard sending your kid to school.  It's especially hard when your child is medically fragile and can't tell you how her day went.   But, in true Madelyn fashion, she has shown us that she can handle it.  She has blossomed over these last several months.  She's smiling and laughing at her teachers.  She shows excitement at school assemblies.  She drives her Mini Cooper around PE.  She participates in crafts, listens to stories, and enjoys music time.  She's watching her peers and taking it all in.  All we've ever wanted is for Madelyn to feel loved at school and to be accepted.  And she is.  There are obvious challenges, but that therapist was right.  She has taught her classmates and her staff about patience, gratitude, love, and compassion.  And we become more proud of her each and every day.

Swinging
At a school assembly

Using scissors for the first time!

Planting her Mother's Day gift
Not impressed with Dr. Seuss day
Driving around PE class

Painting with her classmate