This day seemed so far away. I felt like I had so much time before we got here, but tomorrow morning I will wake up and my son will be 17. I have so many mixed emotions. I’m filled with pride because of who he is, how far he has come and because of how much I love him and his gentle soul. My heart also hurts because the major milestones that 17 usually brings like college tours, prom, and prepping for senior year isn’t our reality. Instead, we recently got a Special Needs Trust in place and am now faced with the fact that I have to begin the process of applying for guardianship. It is a long process and I need to make sure everything is in place so I can continue to advocate for him and his needs and I don’t lose access to important things like medical records.
When I gave birth to him 17 years ago, I held him and cried because I was terrified of how much I loved him already. The love that a Mother has for her child is unlike any love I have ever felt or am able to explain to anyone. The best explanation I’ve ever been able to use to express this crazy love is that it’s like your heart is navigating this world outside your body. All I knew is that from that moment on, all I wanted to do was protect him. I vowed to do my very best for no one to ever hurt him and knew I would be fully prepared for prison time if needed. I’m only slightly kidding.
I was so painfully naive. I thought 10 fingers, 10 toes, a solid Apgar score and we were ready to conquer the world together. I thought the next hardest part after giving birth would be countless sleepless nights, feedings, diaper-changing and Colic. Obviously, I knew that parenting was more than that and not an easy job at all, but I really didn’t grasp that Motherhood isn’t for the faint of heart. Maybe I comforted myself with the notion that if I could get through the early years filled with exhaustion, potty-training, and the occasional site of blood, ER visits ending in stitches due to an over-active toddler, I could make it through the rest with a little more ease.
The truth is that I would pretty much give anything to go back to those days when I didn’t think I could stay awake one more second and the only place I could sleep without a baby attached to me was in the driver’s seat of my car. He could only fall asleep on me or in his car seat after a drive. There’s a big part of me that misses that version of myself, the clueless 30-something that didn’t know intense heartbreak because I hadn’t yet seen my child struggle, experience ignorance and cruelty, and be excluded. I was looking at a picture of that woman tonight and felt intense envy. Not because that woman in the photo hadn’t experienced immense pain, because she certainly had. It’s just that unbeknownst to her, that pain would somehow not seem so bad because it hurt only her. This constant pain she now feels is because her child is struggling and there is nothing she can do to make it all better.
I’m ashamed to say that envy and anger are emotions that have not been a stranger lately. The past few months have been hard and I couldn’t put my finger on exactly what was wrong until social media this past weekend caused me to break down into uncontrollable tears. No one did anything wrong. No one said anything wrong. What happened is the realization of what I feared for so long and thought was so far away was now unfolding right in front of me. It’s that time of year where my feed is filled with pictures of proms, graduations, preparing for senior year and heading to college or thinking about college.
Our son should be going into his Senior year in the fall. We have never regretted the decision to have him repeat Kindergarten. Between being born on Memorial Day weekend and receiving an Autism diagnosis, we only saw the benefit of him having an additional year to grow without pressure in a great Kindergarten environment. However, I’d be a liar if I said I didn’t fear how I may feel 12 years later when everyone he went to pre-school with for a few years was headed to Junior prom and about to embark upon all the excitement Senior year in high school brings. Whenever I thought about the future, I would shake my head as if that helped the thought escape my brain and would tell myself, “That day is so far away, Tanya. Knock it off!”
Here’s the thing, That day is NOW. I felt guilty for feeling envy and anger as I looked at Junior Prom photos posted of teens smiling, having fun all dressed up and looking fabulous. I felt guilty for wondering what life would be like if we weren’t forced to make the decisions we had to make. I pictured what it would be like if he was in those pictures with them. I cried because he wasn’t there and I cried because I hated myself for even thinking about it.
Everything for our son will look different then what I pictured when first holding him in my arms. Of course, I’m well aware that life never goes as planned but you won’t be able to find me a Mom that hasn’t pictured what their children would be doing or all the fun things you’d do together when you’re pregnant or they’re first born. You daydream about it during feedings and rocking them to sleep while staring at their precious little face. You wonder about what they’ll love and what they’ll be when they grow up. It’s fun because the future is bright and the possibilities are endless. Then one day, you may hear words that change all of those day dreams and what once seemed like endless possibilities suddenly feels impossible. You’re infused with fear because there isn’t a doctor on the planet that wants to tell you that it’s all going to be ok. You’re left with your own thoughts and the internet. That’s the scariest combination of all time!
You learn to navigate a world of IEP’s, Neurologists, multiple Speech, OT and ABA therapy appointments and taking separate cars to go anywhere as a family. You learn that you are your child’s voice and that you will do whatever it takes for him to live his best life and reach his goals no matter how different it looks. Your son wants to ride his bike independently?? Sure! Little does he know that his parents are lunatics that will take turns hiding at every intersection along his route as we track him on Life360, hiding behind trucks, dumpsters, to make sure no one takes advantage of him and he can experience that independence for the first time. He wants his driver’s permit at 16 because he said, “That is what 16 year olds do.”?? Sure! We made sure he understood the State of Massachusetts makes the call on whether he passes his permit test and let him take it until he passed. He checked that goal off, drove in many parking lots with his Father and he seems to be content with that. So for now, my husband and I breathe a sigh of relief because we don’t have to tell him that he’s not ready for a license and that we don’t know when he’d be ready. He’s a rule follower so following the rules of the road is easy for him. The hard part is the other people driving on those same roads! We’re relieved he recognized that on his own, too….At least for the time being.
I’m a different person than what I was 17 years ago. This journey of Motherhood is harder and sometimes more heartbreaking than I could have ever imagined. However, it has also been filled with more love than I ever knew was possible. My goal as a mother has always been to raise good humans that are happy and healthy. That goal hasn’t changed but what it all looks like has. I am learning that I need to allow myself grace over the next couple of years to feel what I feel, as the class of 2026 hits all the typical milestones and celebrations knowing at one point that was the plan for him. Then I’ll need to do it all over again when his current planned graduation year of 2027 rolls around. I need to remind myself that I am human. As much as I love a good plan, God’s plans for me and that beautiful boy he blessed me with 17 years ago are different. I don’t know what they are exactly, but I’m trusting that He’s got this.
