An article by my lovely wife as seen on CNN iReport!!!
Raising a Child with Special Needs
By tgdesautel | Posted June 20, 2014 | Fargo, North Dakota
CNN PRODUCER NOTE Tammy G DeSautel’s daughter Macy has Cerebral Palsy, a group of disorders that can affect the brain and nervous system functions. Macy graduated high school this year and refuses to let it slow her down. She volunteers in the Fargo, North Dakota, community and remains active through activities tailored towards kids and adults with special needs.
DeSautel admits she has learned a lot from her daughter Macy and said, “She has taught me patience, unconditional love and to never give up. Macy taught me that we can do whatever we want, it may not look the same or what others may feel as normal, but we can make it all work for us.”
– taliaday, CNN iReport producer
Our daughter, Macy, recently graduated from High School. As this has been a great time for celebration and excitement, it has also been a time for reflection. Macy is not like most other high school graduates, she’s 21 and has Cerebral Palsy.
I have come to realize that there are a few similarities when comparing Macy with ‘typical’ high school graduates. Upon graduation she is going to start a new chapter of her life. But, instead of touring universities or visiting recruiters, we have been looking for day support providers. Even though it was clear that Macy wouldn’t be going to college or joining the military, we still received all of the literature from the universities and even phone calls from recruiters. It was very hurtful to explain to them why Macy wouldn’t be the type of soldier that they were looking for.
Instead of using the term graduating, most of the people in our situation use the word ‘transitioning’. We started the transition conversation quite a while ago. When Macy was 18 and most of her peers were graduating from high school, we were applying for guardianship of our daughter and SSI. This became depressing and I found myself swimming in the ‘pity pool’. So, after a conversation with some friends we decided to turn the situation around. We decided to host a community service project and have a Macy Rae Day celebration. We made goody bags for kiddo’s who make repeat visits to the local children’s hospital. We invited many of her friends and family, filled goody bags, played games and had a great celebration. We decided to have a Macy Rae Day celebration for the next 3 years until she graduated from high school at the age of 21.
As any other parent, anytime there is a milestone in our child’s life we look back at all of the memories we have collected with our child. In looking back at all of her photos and all of our accomplishments and challenges I can honestly say I wouldn’t trade our life for anything! Macy has been the greatest daughter, teacher and friend that I could have ever asked for. She is stronger than anyone I know, she is filled with so much love and compassion. She is 100 percent a blessing from God! I knew what my life purpose was the moment she was born! I am meant to create the best life possible for Macy and hopefully create a better world for others who have disabilities along the way. Our milestones may seem minor to most, but to us they are not just milestones, they are miracles!
Macy has been very active in her community. She has tried many different activities that have been established for kids with special needs; horse riding therapy, city programs, wheelchair sports (with assistance) to include soccer, bowling, baseball, hockey, curling, being in plays, fashion shows and so much more. She is also a volunteer at her church, she’s on the welcoming committee and is a greeter.
Even though I am Macy’s mom and would hope that she sees me as a role model. Macy has become a role model for me, she has made me a better person. Because of Macy we have opened our home to people with titles I didn’t even know existed until she was born. Therapists, doctors, counselors, caregivers… At times your home can feel more like a clinic than a home. When you have a child with special needs your whole world is turned upside down. You have to search for a new normal… After a few years of adjusting and accepting the new normal, life becomes your own. We have learned to create a tight network of friends and family and lean on our friends and the programs that are available. We have learned not to focus on what a ‘typical’ family looks like or worry what others think. We have been very blessed with a great support system of family and friends. A part of that support system for us has been Family Voices of ND. When Macy was born, there was no internet and it was hard to connect with other families. To make a long story not as long… When the state asked what parents who have kids with special needs want/need, they said connections with other families who understand what they are going through. I was fortunate enough to be a small part of the team that helped to bring Family Voices of ND to our state. Now families have a place to contact when they discover their child has a special healthcare need.
Macy is now a high school graduate and we look forward to her next chapter. She will be volunteering at local businesses and finding activities to keep her day busy. She is cultivating new friendships and making her community a better place because she is an active participant in her community. Even though Macy has never verbally spoken a word, she has said so much with her heart, her expressions and with her love. She will always be a teacher and an inspiration just by being the beautiful young woman that God has created her to be. I realize how lucky and blessed I am to be her mom and to assist her along the way. This is our journey together and I couldn’t be more pleased…
Tammy G DeSautel