The uncertainty of it all

The uncertainty of it all

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.

Alyssa December 96

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.

Perfectly , imperfect

My Husband 

I love him with all my heart 

Every fiber of my being 

I have loved Him since I was 16 years old

I don’t really know anything else 

And to be honest sometimes I don’t even like him. 

We don’t see eye to eye on many things

We fight a lot

He doesn’t think the the things I think are important matter .

At all

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

It’s hurts 

I want some kind of normalcy

Christmas day 7 months prior to diagnosis . She always went off alone away from everyone . We started Early intervention 2 months later

Yes things have progressed over the years 

I know in my heart that is what matters

But the progress is so painstakingly slow

Christmas Day 5 months after autism diagnosis. There is no pictures of her opening presents
Or sitting near the tree .

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

Alyssa on the Polar express after receiving bells from Santa

Today my husband opened my eyes to what matters .  Matching pajamas don’t matter 

Love matters 

Family matters 

My daughters progress matters and is enough 

Merry Christmas

More than just a Grandmother

Watching my daughter sit on your lap as you sit at the table seems like the most natural thing in the world .

Except sometimes it’s not

A nana sitting with her grand baby is something you can take for granted .

Sometimes you have to fight for it . Like when that child has autism , and doesn’t like to be touched , hugged or snuggled , or when she does but it’s on her time and her own terms.

You fought for her . You took to the time to wait until she was ready . You loved her so much!

You learned and you were patient

You always believed in her and didn’t care what any of the experts said

You sat with me at night and told me that everything would be okay, that she was so smart and she would talk , you just knew it in your heart. I needed to hear it whether it was true or not

There was a time that she only allowed me, you and her brother to touch her . She wouldn’t let anyone else in . You were the only other adult besides me that could reach her , that could comfort her .

You were the one who got her to eat macaroni and cheese when for months the only food she ate was nutrigrain bars and cheese doodles.

You sat here with me when she started therapy and would scream through her sessions , us both keeping the other one from stopping the much needed help ,

You were relentless with your love and your bond with her was amazing and so special .

We didn’t think she would ever use a fork or drink out of a cup , you were the one who got her to take a sip the first time it was Pepsi out of your cup while she was sitting on your lap .

We couldn’t believe it and laughed because of course she would drink Pepsi out of a cup !

You never treated her any different and loved her for who she was. You always acknowledged her and made damn sure everyone else did too.

Some might say that you were just being a grandmother, but it went far and above that.

You were there when she needed you, when I needed you and your son needed you.

You made sure that her brother also had plenty of love and attention, and gave him lots of extra nana time and treats too of course. You saw how hard it was for all of us.

You made sure she was included whether she was aware or not . You never discounted her feelings or her potential.

Your bond with her was so strong , and it made me so happy . To see someone love your little girl the way you do , is an amazing feeling. It helped me so much during this time .

I was a 23 year old mom with two kids trying to make sense of her child being diagnosed with autism , during a time there was no awareness and no understanding .

You made me stronger , I felt supported and was able to fight for her and to be her voice

A time when others thought she was spoiled and had no idea the difficulties we were face with

And then you got sick

You were 48 years old and they diagnosed you with pancreas cancer and gave you 6 months to live . We were devastated .

We were again faced with an unjust diagnosis . This one even worse than the last.
It seemed so unfair – a person who is so selfless and loves so much .

Alyssa was now 5 years old and had made so many gains but still had lots of challenges .You were a mom to four and a nana to 5 grandchildren , that you adored and who equally adored you .

You accepted everyone. You loved your grand babies with everything you had. You were getting robbed and they were too . You fought with everything you had and battled for almost two years .

You got to see me marry your son , and you were glowing , looking more radiant than the bride. I didn’t mind though , I never saw you look more beautiful and happy .

You also got to witness another grandchild be born and that made you over the moon.

I am so blessed to have known you and have been loved by you . My children were doubly blessed , you spoiled them and loved unconditionally.

You helped me though what was the hardest time of my life and to say thank you seems so small.

I wouldn’t have been able to do it without you. The love and understanding you gave our family meant everything. You never gave yourself enough credit , your impact on us was tremendous.

You are more missed then you could ever know.

Our lives will forever have a void .

You always said our girl will talk and although she is still nonverbal she has words. I can hear your voice saying I told you , I knew she would .

Can you hear her from where you are ?

Can you see her and all the progress she has made ..

I choose to believe you can , that you are looking down on her and smiling and whispering, I just knew it .

I am so incredibly grateful to have known you. For all the love you gave , the kindness and grace you showed and the best meals I have ever had . You took care of us in many ways.

Family support is everything . We Have been incredibly blessed with it , It makes such a difference and lightens the load we carry so much.

I hope you know what a special person you were and how much you were loved.

Dedicated to Louise McIsaac , Nana and mother extraordinaire .

Grateful heart

Tonight I go to bed With a grateful heart .

It has been a trying couple of weeks. Lots of behaviors have resurfaced , flipping , dropping , screaming and some aggression . While things can still be challenging at times, we have learned to navigate pretty well.

We definitely still have episodes from time to time , bad mornings and bad days. If she gets triggered and her anxiety spikes it can be difficult.

We have not had a couple of hard weeks in a row for long time . I honestly can’t even remember when.

I have been talking about Christmas and she wants no part of it . If I mention the tree or presents , she says no thank you , and makes it clear she doesn’t want to hear about it .

It’s a fine line as I want to prepare for what’s coming but sometimes it causes a lot of anxiety for her .

It is so hard when she doesn’t really have an interest in anything , but she likes opening presents.

The past two years she has had much more of an understanding with more awareness during the Christmas season . Last year she was able to pick stuff for her list on amazon and the year before that circled stuff in the Walmart catalog , which was the first time ever.

Which I thought was great . It is so funny to see what she picks .

Ther other day I got her to picked stuff off amazon , she knows exactly what she likes and what she doesn’t . She will scroll right by certain stuff and stop and point at others.

She gets it and that simple thing means so much because for 20 years she couldn’t show us , and didn’t seem to have any awareness of it .

I couldn’t figure out why she was getting upset when I mentioned it . She usually gets happy about it .

I was wondering if she had lost it . If she was Just not interested in it anymore. I was honestly getting a little sad about . We only have only had this for 2 years . It would cruel to take away so soon .

And yes I know I am making this about me . I love Christmas and I want to share that joy with her . I love that she gets it and we can “talk “ about it .

Autism has already stolen too many things , and I didn’t want to give up this . It is already hard to get her through the changes as it is .

Tonight when I brought it up she smiled and nodded yes . I talked about decorating the tree and watching a Christmas movie .

She doesn’t really watch movies but last year we got her too watch a couple Christmas ones and she watched the Dora movie too .

It is hard for her to follow along so I try to keep her engaged as much as I can . Well she went over and sat on the couch and I think she thought I meant now . I said you want to watch a movie and she pointed to the TV and signed yes.

We put on the Grinch , the cartoon version and I didn’t realize there was a new one , let alone it was an hour and half as apposed to 30 minutes .

She did great !! She laughed and smiled it warmed my heart . I was pointed out things and asking her what things were and she was repeating and identifying them .

Engaging in a movie is so rare !

She started saying something over and over and I was trying to listen to figure it out . She was saying Cindy loo hoo , over and over to herself . It was so cute. She was repeating tons of words from the movie and she was so happy !!

She says cheese when she saw the camera ! And is saying Cindy loo hoo while watching the movie ❤️

I am so grateful she is back to herself . I am so grateful she was able to experience this . These are the things that before autism was in Our life were assumed .

I assumed my kids would snuggle on the couch and watch Christmas movies ,
I assumed they would sit at the table and make Christmas lists ,
I assumed they would know who Santa is

There is so many things we assume we will have and that is not always the case . Many people never get to have these , or in her case have to wait 2O years to experience them .

It makes it so much sweeter when it happens .

I appreciate this moment , this experience . Even though it is such a simple thing it brought me so much happiness

It is a gift .

We have to keep trying and hoping .
It’s never too late . We have to find the joy and celebrate the holidays in our own way .

Daddy’s little girl

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 .

#itsbeenalonghardroad

#wewillalwaysbehere

#mylittlegirl

Early intervention days

Alyssa began early intervention at 22 months . This was just 5 months prior to her diagnosis .

Most of the time she was only in a diaper if even that. Her sensory system was out of control .

We were about to enter a world that we had no idea about ; no idea how to navigate , or the difficult road that lay ahead . There was very little awareness then and it seemed almost no girls with autism .

I was still living in the bubble of thinking that she has some sort of speech delay and sensory intergration , now know as sensory processing disorder , which explained many of her tantrums and avoidance behaviors .

I had no clue to the world we were being thrown into . No idea about the heart break and the devastation that was about to come , the life long struggles she was going to face . Here I thought she was going to learn to talk and get some therapies and everything would be just fine .

Never in a million years did I look at her face and imagine the severity of the situation. With an autism diagnosis you get this period of time that you are in the dark … You have no idea what’s coming and I’m not sure if that’s a positive or a negative . It allows you to have hopes and dreams for your child to then have them ripped away and crushed .

At the same time you have this bubble where things are seemingly typical and you get to have the feeling of normalcy .

When I look at these pictures that seem like a life time ago , I know these were the beginning of the most difficult times . There were some very dark days coming some had probably already started , but when I look at these pictures I see my beautiful little girl . She was so funny and cute ! She loved her brother so much ! ( when she wasn’t attacking him, poor kid ~ but he adored her too )

I don’t see the pain , the frustration and the confusion that I know over took many of these days . I can’t help but to wonder if there was more awareness then if things would of been different . Either way underneath it all she was our little girl full of mischief , stubborn as could be , and beautiful . We loved with all our heart and of course still do.