I found Suzie through Instagram a little over a month ago and have been following her journey with her darling son, Trey. I am always amazed by parents who have kids with special needs. I’m grateful Suzie was willing to give a small glimpse into what that’s like.
Suzie is a simple Mom who grew up in the city and the country. From Las Vegas to Star Valley Wyoming. She currently lives in a town called Pahrump, 45 minutes outside of Vegas, which is the perfect mixture of country and city. She loves playing basketball, doing her makeup, hunting, and traveling. She has been married to the love of her life (seriously) for almost 12 years!
March 22nd, 2010 a beautiful, healthy baby boy was born to us. He was the third boy in a row, and we were smitten instantly with his sweet face. We had many exciting firsts with him, his first year of life. Crawling, walking, clapping, dancing, saying first letter sounds of some words, etc. We were surpassing milestones left and right. When we had Trey, he was our 3rd baby in 2 years. SO yes, we had three in diapers, for a few months. It was wild, smelly and I rarely sat down.
Fast forward to when he was 16 months old. Something triggered our sweet boy, and we had lost him. No more eye contact, zero babbling, almost zombie-like. I haven’t heard him say, “Mama,” since he was 16 months old… He’s 8 now. We have had so many learning opportunities to raise a child with autism. I honestly think he was sent to me so I could learn to be more Christlike. It’s as simple as that. He has taught me patience, what having actual soul-deep hope feels like, how to pray, how to love unconditionally, and how to press on.
Having Trey actually gives my life more purpose. I feel closer to my Heavenly Father, because of Trey. To me, Trey is literally perfection, whether the world agrees or not. Our life with just N/T children would be too easy.. I have to remind myself of that sometimes. And what would this life be, if it were just easy?
How do I keep going when things get tough? Well, that’s a hard one to answer. Every situation is different. But the common denominator is knowing there is an absolute precise purpose for why my husband and I were sent a child with a disability. I think knowing that there’s a purpose to this life, that all will be made right in the end, and that death is not the end, motivates me. If i didn’t have the beliefs I do, where would I be on this tough, rugged journey? Where would my hope be? Would I pray as much as I do now? Would I soul search as much as I do? The answer is no. I am nothing without my Father in Heaven.
“I wish to say a word of appreciation for those among us who struggle with handicaps and impart a message of comfort to their families, especially to the parents. Where in all of the world is the son or daughter of God who is totally without blemish? Is life not worth living if it is not perfect? Do not the people with handicaps also bring their own gifts to life—and to others who are free of those handicaps—in a manner that cannot come in any other way? There is hardly a family without one of its members who might be considered physically or mentally diminished. I have a great appreciation for those loving parents who stoically bear and overcome their anguish and heartbreak for a child who was born with or who has developed a serious mental or physical infirmity. This anguish often continues every day, without relief, during the lifetime of the parent or the child. Not infrequently, parents are required to give superhuman nurturing care that never ceases, day or night. Many a mother’s arms and heart have ached years on end, giving comfort and relieving the suffering of her special child.” —James E. Faust, “The Works of God,” Ensign, Nov. 1984,
Superhuman nurturing care. Still working on it!! Does having something to believe in make my life easy? No. It just makes the journey bearable. I still have many rough days. Days where my husband will come home from work, and look me in the eyes and say, “Honey, go get the mail.” That’s code for, get out of the house and go do whatever you need to do, to gather yourself together and come home with a smile on your face. If that’s going to Maverick to get me a hot dog and a diet mountain dew, then so be it. If it’s calling up my mom or sister, and just going for a drive, then that’s what it is. EVERY MOM NEEDS A BREAK!! We all get ragged, worn, or mentally a little crazy. And with that being said, I think it is SO important for every special needs mother to make sure she takes time for herself to regroup.
And let me add to that, as much as I think it is important to have me-time, I think it is even MORE important that my husband and I have a date night, once a week. It can be as simple as putting the kids to bed, and watching our favorite show on TV, with a giant bowl of popcorn, of course. Finding the right babysitter (or two, or three, so you can rotate), is key for us. We can’t just trust anyone. It has to be someone who understands Trey a little and can handle when he has his earthquake-like meltdowns. We have to find someone who understands that his stimming (when he flaps his hands or makes crazy facial expressions), is not him having a seizure. It just means he’s UBER excited about something. We have been super lucky with being able to find a few sitters that we trust. MAKE TIME FOR YOU AND YOUR SPOUSE, OR EVERYTHING ELSE IS GOING TO CRUMBLE AROUND YOU! The divorce rate of couples who are raising a child with autism (and any other disability for that matter), is insane. Take care of yourself, and take care of each other so you can be a team.
I am grateful for the life I live. The ups and the downs. I am so grateful for this bond my family has created with each other, on a magnified level, because of Trey. If I can look at a disability as a gift, or perfect love from our Heavenly Father, everything changes. If I keep on keepin’ on, it will be worth it.
“I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally “free at last.” Until that hour when Christ’s consummate gift is evident to us all may we live by faith, hold fast to hope, and show “compassion one of another.” – Elder Jeffrey R. Holland