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Emotional: I cannot explain what it is like to hear from a doctor that you are expecting twins. It was so emotional, so much so, the doctor sent us home, and we came back the next week after letting the news settle in. Suddenly, you are not just responsible for one little person, but two, all at the same time. Keeping them healthy, growing, and ready to enter the world was a hard task. I spent 10 weeks on bed rest with thoughts of what they would look like, their personalities, and what they would want to be when they grow up.
Twins add an additional level of worry, worried about being the best mommy you can be and wanting to make sure that each twin is loved equally and never feels the other gets more attention or “more” of anything. Tyler was different as soon as he was born. Strange cry, skin issues, eating problems, but nothing that could be immediately diagnosed. Ben actually had a diagnosis soon after he was born. He has a VSD (ventricular septal defect), but for some reason I still had this nagging feeling that something was wrong with Tyler. In fact, I had worries that something was wrong with Tyler before he was even born. I dreamt he was not thriving; he would not eat. If only I knew that for years to come, his lack of desire to eat would be my # 1 concern.
For the first six months of their lives, we transitioned between a pediatric cardiologist (Ben) and gastric doctors (Ty), and discussions with pediatricians about Tyler’s delays, skin issues, eating problems, etc. Sleeping was rare, crying was often, and life was tough, really tough. I could write for days about the emotions of autism and the domino effect of every moment and decision… everyday life...is all impacted by autism.
Financial: Autism is expensive, super expensive. The autism insurance bill in Michigan passed too late to help our family. At the onset of the diagnosis, and even though we did everything as economical as possible, Tyler was costing our family about $2500 a month. It was not really in our budget but somehow we managed for about four years, mostly by accruing a significant amount of debt. The financial hardships and stress of autism tend to amplify the emotional stress.
Physical: Both Steve and I work full time and continued to do so while we went through very time intensive studies, therapy sessions, fighting to get Tyler help. Many moments spent diving across the floor to prevent Tyler from banging his head into the ground and being injured, hours and hours of stand-offs to do the right thing “behaviorally”. The planning and supports we needed to prepare to have in place just to leave the house was exhausting. Life was exhausting, keeping up with two toddlers, exhausting, autism…exhausting. My marriage was exhausting and then there was still work.
Autism can literally drown you in every way possible. Staying afloat takes an incredible amount of strength and energy but mostly love. Time and time again I tried to reassure myself the decisions I made, no matter how hard, were going to benefit our entire family in the future. Autism forced me to put Tyler’s needs before Ben’s and my marriage most of the time. We could not afford putting Ben in preschool at an age he should have been because of all of Tyler’s extra costs. We had to choose places to live based upon Tyler’s educational needs and no matter how hard we tried to make it work for Ben too, we often found ourselves making a decision that was in the best interest of Tyler and then hoping for the best and fighting for what Ben needed. It was heartbreaking as a mother. I remember each and every moment where I consciously made a decision to put Tyler’s needs first, and how painful it was.
The first seven years of their lives were the most difficult of mine. My marriage became more of a partnership in fighting autism than a husband and a wife relationship. We gave up our home and the dreams we had of raising a family there, our dog who I adored from the moment we rescued him, our careers, and my dream of what motherhood was supposed to be and the reality of what it became…survival for my family and fighting autism for Ty. Ty by the way was a rock star, never giving up. He also shed many tears along the way, endured so many hard therapy sessions, and pretty much most of his toddlerhood was spent working on some skill thanks to autism.
Well autism, I have a few things to tell you so listen up! You cannot have my family, you can’t have my marriage, you can’t have my dream job, you don’t control our lives. You don’t have my son, he has you. You cannot have his voice; he now talks in full sentences and is a thriving happy little boy. Ben is doing amazing in school and literally has a heart of gold, VSD or not. He is the most sensitive, sweetest kid I could ever ask for. My marriage is the strongest it has been in years. Our health is better now than ever. I ran my first marathon this year and Steve has started running and is training for a half marathon. We run together now whenever we get a chance. My career is back on track. I love my job so much that it often brings me to tears, truly an amazing organization that I am honored to be a part of. Guess what autism; I have a dog, just as sweet as the first one and we plan to rescue another. I’ve already started looking.
Most of all, even though I believe a home is in the heart of a family, not a location, our family now has a place to call home again. Yep, you can’t have that either, we bought a new home, a better home than the first. One that will offer a great education to both of our children and at the same school. They have services that will help Tyler well into adulthood. A truly magical moment when we decided as parents to make a decision for both our children, as we know one day when we are no longer here, Ben will be looking after Tyler, and we owe it to both of them to give them the best opportunities in life.
So listen up autism, our family is stronger, healthier, and happier than we were when you entered our lives. You cannot have us, we have you. We definitely made all the right decisions as it all lead to this moment. Not an easy road, by any means, but we are here. Destination happiness; soon to be in our new home. Our love can literally conquer all. We fought and won.
The Cretsingers
