I am sitting here with old home videos playing in the background, Christmas 1996 to be exact . It was Alyssa’s first Christmas. We had no idea the journey our life was going to become, no idea the twist that would be starting a year later.
My baby girl was having her first Christmas , sitting with a bow on her head with no signs of anything amiss, while my three year son was tearing through presents like a tornado.
We were at my parents house living with them while saving for our own house, which we purchased just 7 months later. It was our little family with my parents, and my sister .
Life seemed so much simpler then . I’m not saying it was perfect, it wasn’t .
It was full of hope. Full of love and laughter and dreams for our family . Goals and determination for a good life . Young and in love and on track to purchase our first home. Relishing in the excitement of our son and the assumption our daughter would be doing the same before we knew it. Why would we think any different as she sat on the couch, cute as a button with my dad , playing with wrapping paper and taking everything in as 8 month olds do.
It was free from the pain I have experienced since.
They pain of hearing the word autism
The pain of learning my daughter may never talk or walk the typical path
The fear of realizing our move to the suburbs away from the city in search for better life for our children, would also bring us away from friends and family and leave me isolated with two young children and no help.
A young mom 22 years old, alone with a very challenging child and a typical preschooler, trying to make sense of having a child with autism and all the difficulties that come along with it , and a young Dad with the weight of the world on him as he tried to work two three and sometimes four jobs , to support what we realized was not going to be a two person income. It was not in the cards at the time.
We did the best we could and our family supported us and loved our little girl the same if not more, and that has been one of life’s biggest blessings.
It was still a very painful thing to process and accept . At a time when there was no autism awareness at all. All the physical and mental demands this life brings and the emotional toll it takes is sometimes overwhelming.
To try to be hopeful and just move forward the best you can is all you can do. At this time I had no idea my child would be disabled for the rest of her life. I had hope as she was stubborn and tenacious, ridiculously beautiful and so bright, and if anyone could overcome this it was her . If any parents love and determination , if their devotion or their willingness to do anything for their child , could change the course of this path then surely it was us.
It would happen it just had too .
Three years later a devastating cancer diagnosis came . Another completely unexpected hand was dealt . My mother in law, Alyssa’s Nana was diagnosed with pancreas cancer. She was Alyssa’s person , she adored her and they had such a strong connection. She was there during the hardest of times. She completely doted on all her grandchildren but Alyssa was special to her . To think about life without her was completely unimaginable . She was the glue that held the family together .
They gave her 6 months to live and she was only 48 years old. It made an autism diagnosis pale in comparison.
She was taken way too soon. It was devastating, and as hard as autism is this showed me there are harder things in life . Other unexpected things that can change everything.
There are times in life where things are really hard , things hurt and feel like they can swallow you whole . An autism diagnosis can do this , losing a parent can do this, a pandemic can do this , there are many things in life that can and will do this .
This year has some really difficult things . A scary unknown virus, a pandemic, a shutdown. These things seemed as foreign and unknown as Autism pre diagnosis.
Loss of services, regressions, loss of sleep, the anxiety of the unknown , sickness and death for so many. The uncertainty of it all, wearing masks , the behaviors coming back and Learning a new normal , it all felt like a movie, or an alternate reality ; how could this be real life?
At the same time there came some good . Family bonding and togetherness , life slowed down . We learned to appreciate the little things . We spent time together . Alyssa, although regressing behaviorally , was progressing in other ways .
There were so many more opportunities for learning , modeling and interacting .
It made us take a second , an extra minute and find ourselves again .
We have to learn to take the good with the bad , to find the joy , and push the anxiety aside . To appreciate the little things . In some ways it’s a lot like an autism diagnosis , we have to find a way to adapt , to find joy and hope through the uncertainty , to find a new normal and forge ahead the best we can .
In not only 2O20 , but in life in general it’s about learning to live in the moment, to love and laugh and cherish these times of contentment , to work through difficult times without losing hope and losing ourselves .
Instead of achieving happiness we learn to soak up the good times , live with gratitude and give ourselves grace . Find the light or at least move toward it .
For a long time I hated autism , I resented it , I blamed it for stealing my baby girl’s life , and although a part of me will always grieve that life for her , I can see past it. I can appreciate the things autism has given me .
It has given me a beautiful girl , who will always be my girl . Who will always be sweet and innocent . Who knows nothing of darkness and although is forever child-like , radiates joy . Her smile lights my heart always.
Just like autism this pandemic has brought me unforeseen gifts . Through the zooms and the unexpected gift of time , I have made connections and friendships I Never thought I would have . Amazing moms who live the same life as me . Who understand and appreciate all the struggles and joy this life brings .
Alyssa inspires others, something I never thought possible . They look at her and see light and hope . There are no words that can describe how much that means to me . They see how amazing and special she is , just as I do .
So I welcome 2021 but as challenging 2020 was it bought me blessings too. It taught me things that I want to bring into the new year and not forget.
You never know what is waiting around the corner positive or negative . Taking life as it comes and to not always search for the next best thing, or something better, but finding solace in what’s right in front of you.
Each year brings hope for a better year but I think every year has its difficulties some are more difficult than others but it’s learning to slow down enough to appreciate the happiness and peace in between the tougher times that makes a difference, so here’s to love life and laughter in 2021.
He doesn’t think the the things I think are important matter .
And frankly it irritates me
Can’t he pretend to go along
He will humor me but still , not happily
This was going to be the year of matching Christmas pajamas , grinch ones specifically
I am on my phone trying to find them very unsuccessfully.
He thinks it silly it doesn’t matter
We still don’t have a tree he could care less
We are finishing up our breakfast and he signals the waitress to come to our table . I look up and he gives her a 2O dollar bill and says I want to pay for the guys breakfast over there .
I look around perplexed and see and elderly gentleman with a cowboy hat on siting alone eating . He goes to tell the waitress don’t tell him who paid .
We get up and walk out and I check out this guy as I walk by looking for a clue or some kind of recognition . I smile through my mask and mumble a platitude as we pass by .
We get in the car and I say that’s was nice and he says , I overheard him talking to the waitress and he was talking about how he lost his home and his business this year . So he paid for his breakfast , no big deal.
While I was busy worrying about matching pajamas oblivious to anything else
And why ; my daughter with special needs will not wear them
I want the picture perfect Christmas things , even though I’ll never have them
We are busy and messy and Stressed
Our house is loud and chaotic
We are literally the gridwalds
My daughter will fight me on decorations because she doesn’t like change
We can’t have the picture perfect things
Our life just isn’t set up for it
And it’s hard to give that up
I want some kind of normalcy
Yes things have progressed over the years
I know in my heart that is what matters
But the progress is so painstakingly slow
My husband did this gesture out of the kindness of his heart
Not for credit . Not for a picture or a Facebook post
This is the true meaning of Christmas: it’s all the love you’re surrounded with , it’s the blessing your life brings you . It’s not trying to have what other families have , or trying to get that perfect looking picture to post
My daughter is 24 years Autisic,and non verbal
She has willing watched Christmas movies with us for the first time . She rode the polar express train and was so happy to see Santa . She is aware he is bringing her a present . She has picked presents for herself off of Amazon.
This is our Christmas miracle
Today my husband opened my eyes to what matters . Matching pajamas don’t matter
We running errands and she was getting crabby in the car
It’s hard she is used to going places not just staying in the car .
I really don’t want to bring her too many places plus there is no way she would wear a mask . I’d bet on it
NO WAY !
She was getting out of sorts so my husband is going to run in the gas station to see if she has to go the bathroom even though she said no
I’m like damn she won’t wear a mask . I said tell them she has a medical exemption if they say anything . I’ll come in if they say anything . I just left from seeing my mom through a window and I’m not in the mood for ignorance .
He grabs the mask and says it I’ll just see . She whines a little but puts it on . Ok but she won’t leave it on . My husband is pointing to his . She freaking wore it the whole time . I am so shocked ! Then she went in stop and shop and wore it . I can’t believe it !!
You have to try . Next time might be a No who knows ? I am literally so surprised .
I’d like to say Alyssa has always been Daddy’s little girl , but that wasn’t always the case .
It is the most horrible feeling to see your child in pain and not be able to help her . It makes you feel absolutely helpless . It was even worse for her Dad , as a father you want to be able to protect your daughter.
There was a time at the peak of her sensory issues that Alyssa would scream for hours . It was heart wrenching to watch .Only me or her Nana could go near her. If her father tried to go near her she would escalate and scream louder . Her own father could not touch her . There was nothing we could do to help her . Eventually she would calm down and go back to herself, these screaming episodes would last 2-3 hours .
This was her hardest phase and believe there have been a lot of them . We didn’t know what to do for her or why this was happening . We didn’t even know she had autism , or what that meant , for our family or our little girl .
Today she feels safest with her Daddy which how it supposed to be ! They have an amazing bond .