This is five

“I am sorry to tell you but we estimate you have 6 months to live”

We sat there in shock looking at each other. This was at a meeting for my mother in law, who had been going testing for months and they finally diagnosed her with pancreas cancer. She was 48 years old. She was a huge presence in Alyssa’s life in all of our lives.

She said no tears

We fought to hold back the tears of course there we were silent ones escaping, rolling down are our cheeks.

As we adjusted to this Information, me and Alyssa’s father decided we would get married. He was the oldest of four children and we wanted her to be able to see at least one of children get married.

I wanted a traditional wedding and we had limited time to plan it. I also wanted my daughter to be a part of it, I didn’t know how realistic this was.

Autism was in full effect. Alyssa didn’t exactly go with the flow. She still has no language and was very set in her way about things, like shoes, a fancy dress and a cute hair do were not likely.

You have to try. If there is any advice I can give it is to try,because you never know until you try.

This was my wedding and I wanted my little girl to be my flower girl.

She had come a long was in these past two years. She was fully potty trained, less aggressive and a little calmer. Although she could turn on a dime and needed structure and routine.

I Paired her up with my niece and on a beautiful October day she put on a dress. ( we made it as simple as we could) with sneakers and her hair in a pony no fancy headbands or curls for her.

She walked side by side with her cousin and her basket of petals and she did it. It was a miracle, or at least felt like one to me.

I knew to be realistic and that it might not happen. I knew she might not be able to handle it. It was okay I was prepared. Her teacher was there and was ready to intervene and help with Alyssa if needed.

She looked so beautiful and was happy. She squealed and clapped as we stood at the alter. It was as if she knew.

This may seem like a typical expectation for a five year old but I can assure you for her it was not.

I was so happy that she was able to participate.

I didn’t want her excluded. To be the only one on the family not there.

My mother in law was the happiest I had ever seen her. She was glowing. We were at the six month mark and she was still going strong. She laughed, she danced with her son,she was radiant.

It was a magical day, not because it was my wedding but because I had had my daughter and my mother in law on this occasion.

In that moment I was so grateful and I realized that autism isn’t the worst thing. Losing someone you love is far worse.

You can very easily become consumed in the day to day struggles, the inconsistencies, and the difficulties autism can bring. It also teaches you to appreciate what you do have in a way I don’t think I would have with out it.

My daughter had her struggles yes, but she is beautiful and healthy. She is vibrant and full of joy and life. She is here to love and hug everyday ( even if she resists)

I look at my son, and realize how lucky I am that everyday things come so easy to him. He is curious and chatty, and full of personality. I know that is not a given as I once thought.

My husband is an amazing father. I am lucky to have married my best friend. He loves all of us with his whole heart.

I have a new baby growing in my belly. A very unexpected surprise. I was just 10 weeks along. I was happy but scared. I don’t know how Alyssa would react. I was worried. At the same time it gave us something, it gave my mother in law something.

Hope. A new baby, a new life.

She was over the moon and you couldn’t help but follow suite.

Five brought a lot of changes. We were able to leave her with my parents while we went on our honeymoon, we went on a family vacation and it was successful.

She wasn’t where I hoped, but there we major wins.

Hope prevails

Autism awareness day 5

Alyssa age 5

autism #autismawareness #autismacceptance #hope

My Valentine

This is our 29th Valentine’s Day together. Kind of blows my mind when I think about us all these years later.

Valentine’s is just another day in our crazy lives, no reason to make a fuss or waste money on cards.
We know exactly what we mean to each other.

We are best friends underneath it all and we have helped each other through some really tough times.

We don’t always see eye to eye. That is an understatement.

I was recently asked how we have stayed together. I honestly don’t know.

There are times that we barely speak. We just coexist in the same household. Times that we can’t get on the same page about anything.

Then there are times when I think the sun sets and rises on his back. When I can’t breathe at the thought of doing life without him.

He is a great husband. He takes care of me, loves me, does numerous things without me asking or even realizing. I can totally take him for granted. I know if I need him, he’s there. That goes both ways.

We have grieved losing parents together, dealt with an autism diagnosis and all the emotions and difficulties that come with it. We share 4 children. The bond underneath it all is built on love and strength.

He is an amazing father. When I watch him with our children I fall in love with him all over again. He is so loving and patient with our daughter. All three of his girls adore him. He gives them safety, security and unconditional love.

He can lose his patience and we all drive him nuts but the way he loves his family makes me realize how lucky we are.

Underneath all the disagreeing, the bickering, the frustration is a man who loves with his whole heart and soul.

Just don’t ask him what’s for dinner

Happy Valentine’s Day Babe, all I want is a spot on the couch, to watch our show (and maybe a good snack)

love #Valentineday2022 #autismfamily

Silent strength

Young love , there’s nothing like it . You live in this bubble of hope. You make plans for the future and wonder about what your life together will bring.

You dream about where you will live , how many children you will have, what vacations you will take. You look forward to a happy life together.

Especially being so young and naive you are not imagining all the heartbreak and loss you will have to go through. It’s a part of life and how you cope and support each other as a couple has as much to do with how you get though these things together as the actual loss itself.

As young couple , we turned into young parents and we were motivated and determined to build a good life. We had a son and then a daughter, and then we bought a house. Things appeared to be going well or so we thought

Our daughter was struggling and wasn’t developing language. She began to disappear before our eyes. She stopped responding to her name and had some different things she would do. You pushed to get her help when the doctor kept wanting to wait. Things began to get more difficult. She would scream and cry for hours and wouldn’t allow you to touch her. You never left her side. She had many behaviors , she would head bang constantly , flop to the floor and you were so patient, so loving to her. It wasn’t always easy.

We were waiting on an appointment for an evaluation. The day finally came and two weeks later we went to get the results. I sat directly in front of the doctor and you sat over to the side observing , quietly , calmly. Then with one word that bubble popped, turning our world upside down. ” Your daughter has autism.” Tears poured down my face and you stared straight ahead, the rest was a blur.

You held me in your arms while I sobbed
You wipe my tears and told me everything would be ok even though your own heart was broken too

You stood strong and tall so you could hold me up when I need to lean on you .

I yelled how unfair it was , how could this be ! And you tried to keep me calm and reassure me.

I didn’t understand for a long time how it was so much easier for you so accept. How you weren’t as sad as me. I didn’t realize that you just as devastated as I was, but was more concerned with being strong for me and our daughter than yourself. You cried alone , you grieved on your own time when no one else was there.

As time went on you never wavered, and we went through some really hard times. You always loved her know matter what.

You and me , we don’t see eye to eye on everything. Actually there’s A LOT we disagree on.

But ,The important things we agree on.
We have agreed our daughter will be loved and cherished, no matter what. She deserves to have the same experiences as everyone else. She will be treated with respect and love , and not left out. We will bring her out with us whenever possible. We will kiss and hug her no matter how hard she squirms and pushes us away. We would do anything to ease her struggle and help her.

It was you who through her in the air and bounced her over and over. It was you who kept trying to get in her world until she let you in, never giving up. It was you who made her feel safe. You were the one who found her when she eloped into the neighborhood full
of woods and a pond. I was so terrified , and you brought my baby back. You were the one on the other side of the phone who took the brunt of my frustrations and tears. You always gave me grace and were my sound of reason.

Well Mostly you gave me grace, after all you aren’t perfect and this life can be really hard. There is lots of frustration, guilt and fear. The early years were difficult but you were willing to try and take her anywhere where I wanted. You would be the carrying her over your shoulder when things didn’t go as planned.

You were the one who knelt by her side when she had her first seizure and rode in the ambulance with her. I was frozen in fear.

You are her hero. She is daddy’s little girl and I don’t need her to say the words to know how much she loves you and fells safe with you. I know because I feel the same way. You have a way of making everything okay, even when your crumbling inside. You never show it. You always make us feel safe.

You love us , put up with our crazy and take care of us.

We have been through some really hard times, there were times I thought this life could break us . We found strength in each other and in our daughter.

We are always able to rally around her , encourage her and believe in her.

We have a beautiful family, four amazing kids and an incredible bond . Best friends underneath it all

Things get hard at times, we argue , yell
and bicker. We get angry and resentful but we always circle back to each other , our children, and especially our daughter. Her needs are significant and she is the ties that binds our family together.

You are the glue that holds me together. You still wipe my tears and let me know it will be okay. I couldn’t of asked for a better father for our daughter, or a husband for me.

You are truly our hero !

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