My Support System

It’s really funny how life tends to prepare you to handle certain situations you come across over the years. Whether it’s a scenario you’ve mishandled previously or a nugget of wisdom from someone you respect, we always find the need to apply life lessons that we’ve picked up along the way. When we found out about Caleb’s cerebral palsy diagnosis, I felt very unequipped to handle it. I didn’t know the first thing about cerebral palsy. I was determined to learn and continue to learn about his disability and I’m even more determined to help Caleb live to his fullest potential. But when I looked to the people in my life I realized there’s more wisdom and insight at my disposal than any website or book could ever teach me. Therefore this post is about those special people.

My mom: To know my mom is to love her. She’s an active member of the community, is very social with her friends and tirelessly dedicates herself to taking care of her mother and mother-in-law, visiting each multiple times a week at their respective nursing homes. She is also a ed tech in my hometown’s middle school’s special education classroom. She has endless patience and lots of energy from working with kids. She’s familiar with some of the individualized education plans that Caleb might require someday. One her students happens to have cerebral palsy so she’s more familiar with how the symptoms of CP can be manifested differently from person to person. On top of being a wonderful Memere (that’s french for grandmother) to Caleb & Wyatt, she’s always been so supportive of everything I’ve done in my life. We have a wonderful relationship that has kept growing stronger and stronger and for that I’m so grateful.

My mother-in-law: I consider myself very fortunate to have such a great relationship with Beth, since it’s well known that not everyone necessarily gets along with their mother-in-law. I really consider Beth my second mom and value her opinions so much. Beth works as the executive director for Connections for Independent Living in Greeley, Colorado. Her organization aims to provide people with disabilities the opportunity to become independent members of their community by organizing different programs, support groups and classes. She’s more familiar with the ‘disability community’ and keeps abreast with legistlation in Congress that affects this community. She’s even taken up our fight against United Airlines and I’ll have some good news to report on this very soon! On top of all this, she’s an amazing grandmother to the boys; always so thoughtful and generous. The boys always seem to learn some new skill when Mima is in town since she’s so hands on. We’re very much looking forward to her and Boppie’s visit in a few weeks!

My neighbors: Admittedly, I didn’t really know our next door neighbors too much until my parents came to visit us. In typical Madawaska fashion, my dad introduced himself to Ali & Mina and they became fast friends. I came home from work one day and my parents described having tea with our neighbors and eating lots of delicacies from their home country of Iran. Ali & Mina have an adult son named Payman who was severely injured in a car accident. Doctors told him that he would probably never walk or talk again and would essentially be a vegetable. Payman underwent roughly 30 surgeries and Mina describes those few years as some of the worst you could possibly imagine. When she found out about Caleb, she tells me that she cried for days because she knew the helplessness I undoubtedly felt and didn’t want our family to have to go through what she did. She is the ultimate inspiration to me because now, some 20 years later, after giving Payman every opportunity to reach his potential, he is able to walk for short distances with a cane and verbally communicate with his family in their language. He is shuttled into DC everyday to attend a special art school and his creations are simply beautiful. I struggle with worrying about the future constantly and she can really relate to that because she’s been there.

My cousins: My older cousin Ross married a beautiful Swedish woman named Linda and they’ve lived in Sweden for several years now. In 2008, they welcomed their first child, Alicia. Alicia was born with MPPH syndrome which is incredibly rare. At the time of her diagnosis, Alicia is believed to be one of eleven known cases in the world. At four and a half, Alicia can’t walk or stand on her own, can’t feed herself and she’s non-verbal. She’s able to convey her emotions through smiling and frowning. She’s also receiving lots of therapy and Ross and Linda’s goal is that she is able to use her arms to support herself while sitting and she’s doing a fabulous job working towards that goal. She’s such a beautiful little girl with bright blue eyes and pretty blonde curls. Ross and Linda are absolutely in love with their little Alicia. They also have two younger boys, Damien and “Baby” Liam. I use the term baby loosely since at almost 8 months Liam so much bigger than our boys it was actually pretty comical. Damien is a rambunctious 2 1/2 year old who has limitless energy and gave us a little preview into what our life will be like in a couple years! The timing of their visit couldn’t have been any better. We saw them on the same day as Caleb’s big appointment and were admittedly a little down. It felt great to vent about some of the things that we’re feeling and know that our feelings are normal. They have stopped worrying about the future long ago and encouraged us to befriend other families who may be in a similar situation. I only wish they lived closer because Ross and Linda can teach us so much.

Danielson/Levesque clan

There are, of course, so many others who have supported us in one way or another and I would write a novel if I listed them all here. So to all those who have been a shoulder to cry on, an ear to listen to my ramblings, our cheerleaders, our family who we view as friends and our friends who have become our family…  thank you.

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I'm a working mom of three fantastic boys: Caleb, Wyatt and Parker. My husband, Shane, and I live in the Washington DC suburbs where we enjoy playgrounds, pools and never getting to sleep in. This blog is a journal of our day-to-day lives as well as a chronicle of Caleb's progress after a recent spinal surgery to alleviate the effects of his cerebral palsy.

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3 comments on “My Support System
  1. Corrie Anne says:

    Those people in our lives are such HUGE blessings. I love the story about your neighbors. How sweet that your parents got to know them, and how they identify with your family.

  2. kat9365 says:

    That is so amazing that you have such a strong, wonderful support system. I always wish that we lived closer to our families and we’re finally in a place where some of our friends are starting to think about kids – hard to be the first ones!

  3. […] A couple weeks ago, after the boys’ 2nd birthday party, we met up with my cousin and his family for a fun afternoon. Ross, his wife, Linda, and their three kids live in Sweden and come to visit every summer. I’ve always looked forward to hanging out with them, especially since Caleb was diagnosed with cerebral palsy. I say this because their daughter, Alicia, also has a disability and we’ve come to really look up to their family as they’ve offered us lots of wonderful advice and support. I wrote about their visit a year ago, here on the blog. […]

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