Letter to my mom

Dear Mom,

I am sorry the end of your life has ended up the way that it has.

It is not how I envisioned it and I’m sure not how you did either.

No your not dying, not in the traditional sense but parts are you are long gone. I sometimes see little bits and pieces of you they come and go.

I’m sure you pictured growing old with Dad and though you had a family and a long marriage filled with love it still seemed cut short when he passed.

This is not the ending you deserve. You were always the strongest woman I knew and now to see you so frail and weak and unaware it breaks my heart.

You were the best mom. Always there when I needed you. I remember laying in bed with when you were reading your books and always asking you questions. You always took the time to answer them.

You worked hard and taught me to be independent You loved with your whole heart. You helped anyone who needed help always.

When I became pregnant at 16 you fully supported me. You urged me to stay in school and you fell in love with my little boy. You let me parent my own way but were in the background if I needed help.

When my little girl was born you loved her too. You were right there when they were born. You let us stay with you so we could save and buy a house.

When Alyssa was diagnosed with autism you loved her just the same. You loved her unconditionally and never treated her differently. You always made sure to acknowledge her and find a way into her world. It wasn’t easy as she was very selective.

She’s was grandma’s girl as you said it.

Of course when Kierra and Lexi came you adored them as well. You always supported everything they were doing. You have them all special attention as you recognized how hard this life could be at times.

We always had a good relationship. I could go to you for anything. You helped me so much when I was struggling with my daughter being diagnosed, you loved her so much and that made all the difference in the world at that time.

I can’t put into words what an amazing human you are. How much adversity and trauma you overcame in your life. How much you would do for anyone. How positive your outlook on life was no matter how much was thrown at you. How much Dad loved you and how loved you made him feel. How big and tough and loud he was compared to your soft and gentle. It just worked.

I am grateful for all the vacations we took together and all the time we got to spend together. I had no idea our last vacation would be the last one. How
Fast this disease would change you, steal you away.

I love you so much and I don’t want you to suffer and be lonely. I don’t want to lose my mom either although in so many ways I already have.

The is a link between you and Alyssa now. The way you understand and communicate is so similar. It’s so unfair.

I hope you remember how much I love you, how much you mean to me and your grandchildren. I hope you have happy moments even when you don’t remember.

I know sometimes you recognize me even when you can’t remember my name. Some days you tell me exactly who I am and are exasperated by the questions. I love your fiesty attitude, it shows me you are still in there. Always done politely of course.

There is never as much time as you think. I hope Know how much I valued you as mother and a person.

Thank you for being such an amazing mom
and grandma,and for loving my girl and always believing in her.

Make the time, hug your loved ones, stop in for the cup of tea, pick up the phone, time is not always on your side❤️

Blissfully unaware

Autism is a tough road. It really is, so complicated and so hard in so many ways.

From the day you hear the words, you are catapulted into an alternate reality.

My daughter was diagnosed at 2 years old and it has been a long hard journey. The emotions that you feel as a mom watching your child struggle will bring you to your knees.

Everything that you thought you knew about your life changes in an instant.

Relationships change, friendships waver, and invitations stall, and these things are painful realities on top of the the challenges your child is facing.

Family support is so important. I have always been told how strong I am, and asked how do you to this.

I had an incredible role model. My mom modeled strength, compassion and love. She taught me to keep going even when the odds are stacked against you.

My mom never faltered not once when it came to my daughter. She always loved her fiercely. It didn’t matter that she was different.

She always acknowledged her. She made a point to make sure she was never left out. She loved her so much.

When your child has a disability, whether you like it or not,they are treated differently. It’s not done purposely but people don’t always know how to interact. They shy away or overlook them. At times they are ignored,or forgotten.

My Mom learned how to fit into her world. She adored Alyssa. She always supported me and helped anyway she could. She loved Alyssa so much and that helped heal my heart. To know that others loved her the way I did meant so much to me.

She would always to take her for a walks and blow bubbles with her. She would smile and let my mom hug her.

She babysat and spent time with all of my kids. She was an amazing mother and an Incredible grandmother.

She just recently gained her angel wings and although we will miss her enormously I know how blessed we were to have her. She left a lasting imprint in our lives.

I don’t know how much Alyssa realizes or understands, death is an abstract concept. Her Grammy has been gone for a while, recovering from sugery and the medical complications that came along with it.

It’s a blessing that she is blissfully unaware and doesn’t have the pain of grieving some she loves so much,but at the same time there sadness in that too.

I know she will be watching over Alyssa and will see all the great progress she is making. Being loved by her has made us better.

Hug your loved ones close.

Rest in sweetest peace mom 💕

Mamas in the grief stage it is ok

Mamas in the grief stage it is ok

Why would you feel grief over autism ?

Your child is alive ,

They are healthy , even happy most of the time.

It could be so much worse they say.

I have said those words to myself as well as had others say them to me.

It does little to bring you comfort In your darkest corner of your mind.

All it really does is make you feel guilty and believe me we feel an insurmountable amount of guilt already. The guilt can be even worse than the grief.

I could tell you all about my grief , the pain and heartbreak I had realizing my little girl was disabled . The way it shattered my heart and took my breath away . The stabbing pain , the physical pain when I would look at her and want to help her but I had no idea how to.

That helpless feeling as a mother is the worst feeling in the world.

I see the confusion in your eyes when I tell you how sad I am. I hear the tone you use when you say it’s not that bad. I see the words plastered all over the internet, judging, minimizing , and questioning our hurt.

I am going to tell you the pain you feel as a special needs mom is real , the grief is as real as anyone else’s.

We get the added bonus of being shamed and feeling guilty on top of our world being tipped upside down and twisted inside out.

Yes we know our child is not sick , but they are not without pain , we are not without pain.

Yes we have the blessing of having our child
in front of us and we are grateful , but we are not without loss.

I am not telling you this for my benefit , but for the benefit of all the moms going through it . I have walked my path and lived the sadness and trudged uphill through all the hard , at times thinking I couldn’t take one more step.

I did it though , at times I had my daughter on my back feeling the weight of the world , and other times she would pull me with her smile , her light and that was enough to keep me pushing and in time the weight began to lift.

There are 5 stages of grief and we go through them all . Everyone single one of them.

First there is denial, this one is has a lot of impact that catches up with us later.

This is where we can not wrap our head around a diagnosis. We come up with every excuse in the book and even find some signs endearing .

We begin to see red flags and we search for other reasons but in our heart we have a sinking feeling. We allow others to convince us everything okay because we want so badly for it to be true . Our love for our child puts up a protective wall, but it will eventually come crashing down .

Then we have anger. We are so angry . Why did this happen to our child? It is not fair . It feels so unjust . Things seem so much easier for every other child we see , every other parent -Our sister , our neighbor and our best friend .

You try to be happy for others but it is so hard , and it hurts so so much !

We are mad at God , the doctor , and mostly ourselves and for no good reason their is no rational thought in this stage,

Next comes the bargaining stage , taking the anger and turning ourselves into research specialists. Google becomes your best friend and your worst enemy . You will find “all the things “ and you will start ordering and trying everything .

You are convinced you will find that one thing that is going to fix your child. You are sure that if they can just learn to talk they will be fine .
Maybe it’s not autism and if it is maybe just maybe it’s mild , or it will be if you just find the one thing that will help . This is in conjunction with all the therapy , and educational services they are already receiving .

You beg and plead with the universe , God or whoever you think is listening to please let something work . There is a little bit of denial still here in this stage .

Then comes the sadness . You begin to realize that this isn’t going away , it’s here to stay . It’s a part of your life and a part of your child forever .
It begins to sink in and you become overwhelmed with emotion .

The whys come back . Why your perfect , beautiful child , why are they inflicted with this . It feels like every other child is surpassing yours and experiencing a typical childhood . You are sitting at iep meetings hearing how behind your child is and all the things they will never be able to do . It is crushing.

You lose your fight. Your dreams for your child slowly slipping away as you realize this is forever.

You will begin to move into acceptance. You will feel a huge weight lifted off you when you move into this stage.

You begin to see your child in a different light . You relish in their accomplishments and celebrate them. You see the light at the end of the tunnel .

You realize that this is your life and your child’s life . You take the ups with the downs . You become stronger . Your fight comes back . You fight for different things now . You fight for communication instead of words , you fight for progress , you fight for joy . You let go of the why and move forward with the here and now .

Mamas who are in the grief stage, it is okay . You need to recognize your feelings to own them . It is unhealthy to keep them bottled up . It will only lead to guilt and shame. It is your truth .

Do not let someone who has not walked a day in your shoes tell you any different . It is perfectly natural to feel this.

I am not going to lie, it is not always an easy life . You will grow thick skin and you become a mama bear like no other , and you will walk over glass to protect your child . You will be their voice .

Acceptance is not a forever stage , you go back and forth . You will go back into sadness at different times and that is ok . You will take a day or an hour to cry and then dust yourself off and come back .

You will experience more joy than you ever imagined. You will have an overwhelming sense of pride and be in awe of so many barriers your child will break . You will find your people .

Although this is a hard life it is not a sad life .

To People outside of our world and to well meaning friends and family , the grief is real and it’s hard .

Do not try to tell us any different . Please understand this does not mean we do not love our child . We love them fiercely and it is because we love them so much that we don’t want them to not have to walk such a difficult path but we learn to hold their hand and walk along with them..

Be kind and be compassionate , and if you don’t know what to say don’t say anything sometimes just being there is enough .