A Year of Change, A Year of Grace

“Nothing ever stayed the same. There was no force in this world strong enough to withstand the march of time.” – Sam J. Charlton

What a difference a year, a month, or even a day make.  My husband casually remarked that we have lived in Minnesota for almost a year now.  One year.  Has it really been that long?  It seems like we just moved here.

For my husband it has been a dream come true.  He loves his boss, the people he works with and has overall transplanted beautifully.  He’s planned places he wants to visit locally when we are safe from COVID, made plans for the home we bought, and Virginia seems to be packed away like winter blankets.  A distance memory.

I’m topsy-turvy and always will be. I lost the best support systems.  My special needs mamas, Noah’s Children, Better2gether RVA, We Heart Harlie and Friends.  These organizations and people were my lifelines.  The loss of them has been devastating.  I didn’t realize how deep my roots had been planted until it was all gone.  You cannot replace people.

For me it has been a time of growth.  Rediscovering and learning new skills.  Introverted by nature I’ve had to make efforts to connect with new people here.  To learn new ways of doing things.  And always to advocate for my kids.  I have family here as well.  I want my kids and husband to meet them.  To connect to my roots.

I don’t know how it happened, but somehow I blinked and Marvin turned 13.  He moved from his perfect little school to public education.  Pandemic not included it has been a rocky year.  We moved to a charter school after our local district said they were not equipped to educate him.  He’s also had to make new friends, which he does pretty well.  He’s growing up and starting to self advocate more for his needs.

His KMT2E is now O’donnell-Luria-Rodan Syndrome and he has tested as having an ID. Plus possible EOE thrown in.  We struggle to find the support we need with him.  He had an amazing therapist in VA and they seem to be few and far between here.  But Marvin doesn’t quit.  He keeps advocating and pushing to find what he needs for himself.  I’m super proud of him.  Changes are hard for him and this year has thrown it’s fair share at him.  He keeps trying.  Seeing him fight for himself makes me push harder to set him up for success.

Then we have my ever spunky, never quits, 8 year old.  She’s still beating the odds.  After kicking two doctors, loudly proclaiming her presence in her recent MRI, and giving her new PT a super hard time I would say that not much has changed in her personality.

She misses Ms. Ruth and Ms. Virginia, her VIP teachers from church.  For her loosing them and Buddy Break has been hard.  She points at old lessons that I couldn’t bring myself to throw away.  We have a great church but what made it special for her isn’t there anymore.  She’s adjusting, she always does.  But I wish I didn’t have to give up the very few things that meant so much to her.

As for her health she’s gone to needing oxygen support regularly,  her brain continues to disappear, but at a much slower rate, and she also pushes herself.  When it’s convenient.  But still, we take progress around here in any format.

By and large so much has changed.  I’m hoping things settle down this coming year.  I feel like I have had quite enough changes in the life department, thank you very much.  We are a strong family and will continue to roll with the punches.

You might also enjoy