He rarely settled. He would scream for most of the day and we had a difficult time to help him to relax. As a matter of fact, we were lucky if he slept for two hours in a 24-hour day. He wasn’t comfortable and we didn’t know how to make it better.
As he grew, our challenges grew too. He didn’t walk so he needed a wheelchair. He didn’t have the muscular strength to sit upright on his own so he had specialized seating and chair inserts. His hearing was impaired and he didn’t speak. Much of his communication was through body language, and incessant screaming. When he got frustrated, he would hit himself, so he wore arm bands to prevent self injury. He was plagued with frequent illness because every time he drank, liquid would aspirate into his lungs. By the age of 3, he received a g-tube so that all liquids would go directly into his stomach and avoid further lung damage.
There was no diagnosis and he was a mystery to most medical professionals. It was a guessing game for everyone. Each day I would wake up and wonder, “is today the day he is going to live, or is this the day when he may die?”
I am so thankful for this experience.
My family and I know first hand, the challenges that come with raising a child who has a disability. We have gone through the unrelenting emotions and nonstop worry, the constant confusion, and the endless exhaustion. I remember the sadness, the everlasting stress, and the never-ending uncertainty. Despite all of that, I am extremely thankful.
Here is why…
- Family – The bond among our other children, my parents, extended family was strengthened and it gave us a chance to stay close and strengthen one another.
- Good Friends – Whether it was going out for dinner, a visit at one of our homes or a daily phone call, we relished the company of our good friends.
- Learning – Every day brought additional information or a new experience and we gained knowledge and greater understanding of many things related to health care, education and social services. We learned about the power of positive relationships, communication and so much more.
- Barriers – Gaps in services, inaccessible parks, lack of funding, negative attitudes inspired us to speak out, ask for what we wanted and work toward making change.
- Self Actualization – We realized our own strengths and talents and were able to extend our skills and expertise to help others.
- Laughter – Even while sitting in a hospital, we found something to laugh about. There is humor in every situation and we gave ourselves permission to see it.
Candice, Lani, Stephanie, Emily, Katie, Cynthia, Lori, Tracie, Stacey and Greg. Thank you for your outstanding support and your commitment.
- Awesome Support Workers – Candice, Lani, Stephanie, Emily, Katie, Cynthia, Lori, Tracie, Stacey and Greg. Thank you for your outstanding support and your commitment.
- Community Support – We appreciated the work of the community agencies that helped our family along the way.
- Health Benefits and Government Funding – We could not have done it without our health benefits and funding from our government programs.
- Opportunities – For meeting new people, developing a career, travel, and personal development.
- Exercise –Working out was my outlet. I would walk, run or put in an exercise DVD to stay fit and relieve stress.
- Coffee – We would take time to have a coffee together or with friends and talk about the day, reflect on our feelings or plan for the future.
- Time – We were given the gift of time to spend with one another, to cherish our opportunities and to realize that it was so very important to take time and nurture what was valuable in our life.
- Faith – There is no coincidence in life and we recognized the potential in our situation that was the beginning to so many good things and how it gave us a chance to make a difference for others.
- Love – Love is one of the most profound emotions known to human beings. We had to dig deep into the love for one another and work through many ups and downs. We also felt love from so many people which helped us through some of the more difficult times.
And finally, I am thankful for Eric. A young man who had a smile that was contagious. A person who showed perseverance, patience and strength. Sharing our life with him was a journey way beyond what we would have ever imagined. He changed our life and we are eternally grateful.
Gratitude shifts your focus to what you have, to the abundance in your life, rather than what is lacking.
Harvard Health Publications references two psychologists, Michael McCollough of Southern Methodist University in Dallas, Texas, and Robert Emmons of the University of California at Davis, who wrote an article about an experiment they conducted on gratitude and its impact on well-being. They found that participants in the gratitude group experienced less depression and stress, were more likely to help others, exercised more regularly, and made greater progress toward achieving personal goals.
For one day or one week, take the time to write down all of the things for which you are thankful for. I guarantee that it will change your life!