So this past weekend (Friday-Sunday), we went back down to the shorehouse. The weather, wind, and water conditions made it the perfect beach day. Long story short, Autumn had a blast. She was in her glory. She barely sat still from the time we got onto the beach until we left. In these moments, she was perfect. No limitations, no worries, no autism, just her being a sweet three year old enjoying the moment. As a parent, there truly isn't any words to describe my feelings in those moments. I kept saying to myself that with the input of the sand and water, this is the "best" OT session for her. No wonder she's in love with the ocean and sand! I also kept thinking to myself that I wish we could go to the beach often even though I'll be spending my time chasing after her rather than sitting my bum in a beach chair getting some rays...and that's okay too. Above all, I kept thinking how "normal" this all feels, how happy I was that she was happy and content and isn't that what we want for our children? Yes, yes and YES! Her inner peace is my inner peace here, it's no wonder that my in-laws and husband have loved every moment on that beach for over sixty years, which only makes sense that my daughter and myself are the happiest near the ocean and vision beach. So my goal is to get down to the beach as often as I can with Autumn before the water starts to get cold in October.
While at the shorehouse and on the beach, I was so excited to finally talk to another "special needs" mom and family who "gets it". We shared our stories and frustrations and it just felt good to talk to someone whose been through similar experiences that were currently going through. This also brings up the next "topic" that's been inspired by the husband and I hope not to offend anyone here...
So my husband and me had a very lovely conversation Sunday driving back home and while at home. We talk a lot to one another, and I mean A LOT. After all, he IS my best friend and I am his. Any ways, I shared with him how great it felt that I was able to talk to another special needs mom and all that jazz. He went on to disclose something that was harsh, which excludes family members and my online support groups and here it goes: we don't have any friends. His point was very valid. The "friends" we do have don't understand what were going through with Autumn because they don't have kids yet, live too far away or are too busy with their "normal lives" to make time for us and who can blame them? As Matt put it, "normal parents want to do normal things with their normal kids...let's face it Trish, our little family will never be normal. This IS our normal."
Theres a lot of truth behind my husband's words. He went on to disclose how he feels isolated at times and that at the end of the day, everything falls/is on us. Just him and me. It's a pain that I can't describe. I already know that his/my ideas on what parenting was "supposed" to be like have been jaded since her diagnosis, but these feelings of isolation and loneliness are even stronger. Bottom line: having a child with special needs, and in our case, autism, has made us (especially him) feel like were living on our own secluded island. Sure, this "island" is beautiful and majestic but the water that surrounds it can be very rough, which makes it difficult for those to "reach us" or for us to "reach them" at times. It's within those waters that fear lies. The fear that keeps those whom we care about away because of the unknown. A fear that builds barriers, walls and ignorance. The obligations behind the fear consumes our lives that we often forget how calmness feels like. A fear that I hope will subside with time and eventually we won't feel so alone anymore and we'll have "visitors" from time to time and we too can get off this island once in a while when the weather is appropriate.
So after disclosing our feelings and hearing the hurt and pain within my husband's voice, I had to remind him how grateful I am to have him next to me on this journey and that were so lucky to have each other and really, that's all that matters at the end of the day.
On the upside, I hear that the "special needs" parents in our town are wonderful. I am sure once Autumn starts preschool I will get to meet some moms who "get it" and they will become part of my village as I will in theirs. This doesn't mean that the friends I had previously don't matter, it just means were moving in separate directions and that's okay. That's life. The true ones will still be there regardless.
Overall, my husband's revelation is a sad reality for many special needs parents: we do feel alone and isolated, even from family and close friends, until we find our "village" and those who truly "get it". Our marriage lives tend to be put on the back burner (no date night unless it's a wedding, anniversary or a birthday-as for personal time haha, unless driving and sleeping counts) and everything in our lives revolve around our kids who need extra, extra help and support in life in hopes that maybe, just maybe, they will grow up to be self-sufficient, responsible adults without requiring extra care someday. Sure, don't ALL parents experience the above? Yes, but it's like comparing apples and oranges: they're both fruits but entirely different in their own rites. That's the same when trying to compare typical kids and not typical kids, one just can't.
Lastly, ending with the words of my favorite singer/songwriter Sarah McLachlan that the hubby says reminds him of us (well Autumn and me) and he couldn't be more right. "We're gonna push on through, pretty girl, Just like we always do, beautiful girl. I know the world can be cruel, pretty girl. You're gonna make it 'cause you've got love on your side. One thing I know is it will get better."
Yup, Sarah, I agree. It will. It has to because we do have love on our side. You're that love husband. Remember that. Forever and for always.
My true loves (missing Leah here).