Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, September 6, 2024

The Long Pause

 Wow.  I never thought it would be this much of a break between posts. 


 When I started this blog, I had the best of intentions to keep it going, and I did that for a long time.  Considering the absolute mayhem and life craziness that existed Meagan's first 5 years I'm so glad I have all the cherished memories and records of her journey to reflect upon.  

I remember when Meagan was going to start Kindergarten and I had my first "lapse" in posts.  I thought to myself - once we work through this year, I will get back to it.  And then like they always tell you, we blinked and now we are well past Kindergarten.  There is SO much information from Meagan's elementary school years I wish I could have shared, but we will go forward from here.

   Overall her elementary years were amazing.  We had an incredible program at our local elementary school (where her older sisters also attended and where her current younger sisters are).  The teachers, staff and faculty were all so wonderful.  We really built a family there and that I think is the best lesson I learned and best advice I can give.  Build your team.  If someone isn't working, it's not personal, but kick them off and ask for a replacement.  Those that get you and your child, keep them close.  Never be afraid to stand your ground and fight for the rights your child inherently has, and always be appreciative and grateful when those that DO work with you stand up and help you along the way.  Meagan thrived in elementary school and we are so thankful she had such an amazing environment.


Meagan started middle school almost two years ago.  Thankfully it has been a relatively quiet two years medically - her shunt is holding up for the most part, and her seizures are largely at bay.  We have not had any major incidents and are thankful for everyday that continues.  Middle school has been another journey - last year was the first time we had to hire an attorney to help us navigate the district.  It was really amazing to me how many lovely staff we met on the ground who were willing to help and wanted to do the right thing, while at the same time the district personnel (who largely have not been in a classroom in years, if ever) would fight against that staff and us (the families).  Luckily, I have been well formed over the years and have tough skin - we were able to navigate last  year with the help of our wonderful attorneys and we built good relationships with the few staff that really understood Meagan's case.  She started this year (7th grade!) with a MUCH smoother transition - largely due to the fact that she also got a new parapro.  Meagan has had a 1:1 para since starting "regular school" and those relationships can make or break an experience.  The para last year unfortunately was not great, but this year she is lovely so far.  Smiling, positive attitude, and everything needed to make sure Meagan stays motivated, focused, and safe.  We are very grateful for this shift in staff.  We will keep you posted on how 7th grade goes.


We have had some changes personally as well since you last read this page.  We had very happy moments (two more daughters joined our family) and some sad (we unfortunately lost a baby as well).  Our family is now 10 people strong and Meagan is still smack in the middle - the glue that holds us all together.  Our oldest daughter is now a sophomore in college.  Then we have a Senior, Junior, Freshman, Meagan, 3rd grade, Kindergarten and 2 years old at home.  Needless to say we are busy - but it's a wonderful kind of busy and one I wouldn't trade.


My goal is to try and get back to keeping up her blog and tell you all the amazing things Meagan is doing now.  Her life is still not without struggle in many ways, but I want to tell you that it is always beautiful.  There are so many people we now call family that only entered our lives due to Meagan's existence.  There are so many people who have been lifelong friends because they know me and have stood by me for years - even if it was uncomfortable.  We have also lost friends along the way who perhaps didn't agree with my stance on things, or maybe my strong personality made them feel uncomfortable - but that is ok.  It is part of life to have friends that are there forever, and some that will be there for seasons.  With a special needs child that is especially true because it is a very different life and sometimes even the people you think are close will just never understand it.  We are still thankful for those relationships because they did serve as a valuable part of our lives, even if they are not in our lives anymore.  


We are navigating new things now with Meagan - like middle school, puberty, hormones, medical questions, growth struggles, the complicated social situation of what she can and can't do and how to build relationships/help her make friends - so there will be lots to share I'm sure.  Even though I have done this many times before, helping her through life at this stage is very different and we will be learning new things as we go.  


What I do know that hasn't changed is Meagan is still teaching us new things everyday.  She is growing and changing and becoming her own person.  She still has her sarcasm (perhaps a little too much), and her humor and is starting to get a little attitude now at almost 13.  But I love all of that because it means we were allowed to have her as ours - we have zero regrets ignoring the doctors who told us her life wouldn't be worth it and only feel sad that they cannot know her as we do.  Meagan will continue to grow and change, and I'm sure there will be challenges and sad times - but we embrace all of it.  


Some may have fallen off this blog long ago, but for those still around thank you for all those years of support.  We are excited to share Meagan's new adventures, and reflect upon some of the more poignant moments of her last 7 years.  Even with the long pause, one thing remains the same - Meagan is still here and still making herself known.  She's continuing to change us, change those around her, and I do believe she will continue to change the world.


Until next time friends.... 

                                                        


                                                                 Our 8 beautiful girls




Meagan has found a love of theater/singing... more on that later :)



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