Sharing their stories
Thank you Community Contributors. I am so grateful for the families that opened up and shared their lives with us on the blog this year! It is always so touching to hear what they have dealt with and overcome. It builds our community, helps us know we are not alone and gives hope for each of us in our circumstances. I have pulled out an excerpt from each of our 2022 contributors that blessed us this year for our last blog of 2022.
As we begin 2023, I hope you will consider sharing your story, too! We have a google form that makes it simple to do! Your story is important! I look forward to hearing from you.
Fill out the form now: https://forms.gle/fxQvsF29iGG7uqZ1A
Always in search of a caregiver?
Mary Ann Niestadt Struxness
My family has survived this situation many, many times in the past. I pray each time we go through this process asking for the best applicant that is a good fit for my son. Of course, I know that all prayers are answered in God’s time and the way He sees fit. It is through faith that I am able to keep going. My faith in Him that He will provide for us and see us through this difficult task.
Dr. Annika Mandujano
As a physician and being a small part of this journey with my sister, I never realized just how much we can focus on what someone can’t or won’t be able to do. Zoe has taught me to see everything we can be, to believe in it, to have joy and celebrate it. I will never take that for granted. Today, I celebrate all the miracles in my life, specifically one named Zoe.
I have learned that children with special needs are still, first and foremost, children.
I have learned that siblings in the homes of special needs kids or adults need to be lavished with extra love by friends, friends’ families, and other family members in addition to their parents.
I have learned that it’s important to be a person who is safe to be sad with.
I have also learned that caregivers know best what they need.
From where I stand, EVERYONE benefits when you share. Share your time, your presence, your encouragement, your touch, your resources, and your prayers.
I am thankful for all the time I have spent with the Henderson family through the years, but particularly for those I walked with them during Robert’s illness. Doing so was a daunting privilege. He blessed me, and sharing his family’s care journey, though mostly from a few hours away, revealed God’s grace to me in new and powerful ways through deep friendship, sorrow and joy.
All this to say, I’ve seen firsthand how things can change … Things can turn out better than you might ever think. I can see all three of our sons going to college (one already is half way done, the second will start this fall) and I can see them getting married, too … Those are things I never believed were possible in the beginning. If I could go back in time and give myself a pep talk, it would be to just look up more and believe. To have confidence in a good outcome. Know that leaning on others really does help and you’re absolutely not alone. Also, everyone’s autism journey is different and special and inspiring. And as much as others have pointed out that I’ve helped my sons to be where they are - I’d say, they’ve taught me to never underestimate anyone. We all have challenges, and doing what you can, where you are with what you have is all you can do. I also treasure as much of it as I can daily because if you really consider it, there is so much to be in awe of.
My sister saved my life with her quick compassionate action bringing rescue. She stayed with me, and supernaturally gained strength to lift the heavy Maypole lid off of my head. Our loving sister bond tightened permanently that day. From my hindsight this singular act put her on track to become a champion for others who cannot fight for themselves. Destiny later proved it included fighting for the life of her own youngest son, Robert.
This traumatic event changed my life. It revealed to me a truth that I am not only noticed, but valued and loved by others, foremost by God. Not everyone discovers their worth through a crisis. That just happened to be my path. I do not wish that method for you. I hope you learn that you are valued and loved early in your life, or even today. And that you will always need some good people in your life contending for you.
Disability, Death, Life, and Fatherhood
Dr. Michael A. Pasquarella, Colonel, US Army (Retired)
Upon retirement, and with widowhood, my job as a father really kicked in. All four of my daughters, to include Cristina, have kept me focused in this new phase of my life. I have developed a much better understanding of Cristina and of all of my daughters. We've had conversations we've never had time to have before. There are problems and solutions that we've discovered. I went from the sidelines of daily fatherhood to being IT.
This is not the retirement that I may have planned, but to tell you the truth, I never really planned a retirement. With so much going on I kept my focus on solving daily problems. This continues. However, problems are challenges, challenges that give me a reason to make it to the next day. I hope to meet those challenges for at least another 30 years!
Embrace the challenge. We are only dealing with ADHD so I feel our circumstance is not as challenging as families dealing with severe disabilities and my heart goes out to them for the tireless days and nights of caring for their loved ones. But advocate. Be an advocate for your child. Get to know what you can about what their challenges are and will be. And do what you can to take time to enjoy your loved ones no matter the challenge.
While singing in the pediatric oncology clinic in San Antonio, a nine-year-old girl, in her last days of life, requested her favorite song “True Colors”. As I sang to her she closed her eyes and sang every word along with me. Although she and her family were facing the hardest part of life, that moment was all about the joy of singing together.
An additional experience was while we were visiting a hospital singing room to room, we entered the room of a precious three-month-old who had just come back from surgery. As we sang songs like “Twinkle Twinkle Little Star” and “You are My Sunshine”, the parents started crying and shared that our music was “medicine for their soul that goes in through the ears and straight to the heart.” This is why we do what we do.
Motherhood Musings - The Lonely Middle
Then I remember something I read yesterday. It said that the number one regret that people have for their lives on their deathbeds is that they wish they would have let themselves be happier. I wonder, how am I stunting my own happiness? Seeing blessings as chores. I let little things overwhelm the bigger picture daily. Because of some story I told myself that this all should be easier.
In the middle of my musings, I look up to see my boys laughing at each other. Some moment I missed by being so engrossed in my own thoughts. Just then, the baby takes a bowl of dry cereal and dumps it onto the floor with gusto. The small pieces scatter and I know they will need to be picked up. Instead of rushing into action, I sit looking at the mischievous smile he wears so proudly now. I think, I can embrace happiness now even in the middle of chaos, and I smile too.