This poem is very well known in the Autism community and although it still elicits great emotion 18 years later, it really does accurately describe the feeling after your child has been diagnosed. Holland. I remember getting this poem from one of my fellow warrior moms, Toni. I think she read it to me over the phone and tears started to stream down my face. Holland. Who in the hell plans to go to Holland? I never did. I never even dreamed about Holland. And when she read it to me I remember thinking, “I want off this freaking plane and I want to get on a plane to Italy. I remember being irritated and saying to myself, there will be NOTHING good about Holland.” I was pissed and I was devastated and I was broken hearted. I didn’t like the reality that was being shoved down my throat and as a professed OCD control freak I was trying to figure out a way to fix this situation I had found myself in. But there was no use. This was something I had zero control over. And I didn’t like feeling that way. I felt so incredibly helpless to help my child, my baby boy, who I would give my life for. I was powerless and defeated.
As I wrote about in “Our Story”, Dave was diagnosed almost 18 years ago, on October 1, 2003 to be exact. D-Day is what I call October 1st now (short for Diagnosis Day). Every single year, as summer starts to fade away and you can feel that slight chill in the evening air, (signaling that fall is coming), I get sad. Sometimes I don’t even realize that D-Day is coming up but something in my bones senses the familiarity in climate and I start to get depressed. Every single year, it never fails. It’s weird how your body holds memories like that. Just from the weather, my mood shifts. That very first D-Day, October 1, 2003, after I left the doctor’s office completely stunned and saddened, I drove home in silence. Dave was in his car seat in the back and I was in the front on the 45-minute drive home and we both sat in silence. I went to the appointment alone, my husband had to work and for some reason I didn’t think it was important enough to beg him to come with me. I don’t know if I didn’t think they would diagnose him that day. I don’t know what I thought. But I know I was deeply saddened. And I didn’t want Dave to know how I was feeling. So, I sat in silence on the drive home. Tears silently streaming down my face, unsure what to do next.
After I got home, I went into a deep depression. I cried and I cried, alone, for days. I was the type who held my feelings deep inside and away from friends, family, even my husband. I cried in isolation. I cried in despair. I cried for the perfect life I thought I had that was just shattered. In fact, I remember laying in my bed, in our brand-new home, with my brand new baby and my amazing husband, just 6 short months prior to that day. I remembered lying there and thanking the Lord for all my amazing blessings. And then I remember a shot to my heart, a Holy Spirit twinge, a fear, a feeling, something that told me something bad was going to happen. I remember feeling my life was perfect and I feared for when that would change. I had a foreboding. And here it was. I don’t know how, but I had known this was coming.
I remember getting home and calling friends and family and giving them a quick, “he has Autism and I don’t want to talk about it,” call. It was quick and brusque and emotionless, because that is how I was. I didn’t want to share my grief with them or with anyone. So, I moved on to tears in isolation and wondered what I was supposed to do next. It all was too overwhelming to even begin to think about so for a couple days, I did nothing. I grieved. I cried. I was in anguish. I started to hear from people about ‘so and so’ who had a child with Autism and how I should call them. So, after a week or so of grief I begrudgingly started to call people to see what the next steps should be. And Toni was one of the first I calls I made…
You will read throughout this blog all the steps I took, all the therapies we tried, all of it. I have journaled everything since the day Dave was born so I have every detail. When things got crazy sometimes I only journaled monthly, but I do have it all written down. I hope that our journey can be of encouragement to a new family on our same journey or perhaps someone else on a different journey.
This life is not for the faint of heart but I can tell you that I have grown so much as a human because of autism. The Lord has used this trial to mold me into a better person, into a grateful person, into a person who no longer “sweats the small stuff” and someone who celebrates the smallest of victories. I would have never chosen this life for myself or my family, but much like the poem says, “if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”