Happy Mother's Day

One thing about parenting an Autistic person that no one tells you about is all the holidays you will miss. I never had my son wake up at the crack of dawn thrilled to open his Christmas gifts. Or hear the crinkle of cellophane as the Easter Bunny creeps into his room with a massive basket. It's not that we didn't do lavish gifts that an only child experiences. It's that he didn't notice and didn't care that much about it.

My sweet boy. 
I knew something was "different" about him even at this age. 

When he was little, Daddy took over the job of making him do my card and a gift for Mother's Day. But now that he's 32 that's gone with the wind. Don't get me wrong. My husband still treats me like a QUEEN every day and especially on Mother's Day. Because he knows that's something I'll never get from our son. Not for a single day. Not my birthday, not Mother's Day. My mother also always gets me a Mother's Day gift because she knows I'm a good mom and that my son won't do anything to mark the day.

 

 He still is this brave. 
I am proud of him every day. 
Well... almost every day.
 

There will be no "taken out to lunch" by my son. No flowers. No card. Maybe he'll remember and I'll get a text saying "Happy Mother's Day." But that's if I'm lucky. 

My sweet mom and amazing husband do their best to fill in the gap, but it's still a loss that I feel every year. It's one of the glaring moments that shine a light on the challenges of being Autistic. I honestly feel worse for him than I do myself. He's missing out. Missing out on the closeness that other's take for granted. It's just him. Alone. In his own world.

When he was little I once told him that I constantly feel like I'm holding onto a rope that's tied around his waist and I'm pulling him back to the "real world" for fear that if I let go he will completely slip into his own dimension in his head. He agreed that that's exactly what it felt like for him too.

 

Monterey is still his favorite place. 
We need to plan a trip and go soon.

His novels actually explore that theme very well.

But again, it's all about him. 

You share a life when you have a child. Not to share that life, but to still have them physically there is both odd and upsetting. I do a good job of trying to always see things through his eyes. But once in a while that is hard to do. Like on special holidays.

Now that he's an adult I never expect him to participate in family events. I let him know what we're doing and make the offer. But usually it's too crowded, loud and busy for him. Even with headphones and his laptop with him. I get it. Again, from his point of view. But as a mother, of course I would love to have my son there. I'm proud of him. He's an amazing person. I wish more people knew just how amazing he is.

But I'm the one holding the rope. In reality it's always been just him and me. And I'm sure it will be that way until the day I'm no longer here. 

Best Christmas Yet

Oh boy! Do I ever have a lot to be thankful for this year. I feel like every wishbone, birthday candle and dandelion I've found over the last five years have paid off. And now it is the holiday season. My first one as a re-abled person. The first one I can stay awake all through in five years. You bet your sweet ass that I'm "walking in a winter wonderland." Or almost... it's still 80* outside where I live.

Holiday shopping excitement!

I've already warned my husband that Christmas is going to be a very big deal at our house this year. I'm putting up every string of lights we own, crafting till my fingers blister from my hot glue gun and kissing every creature I encounter under the mistletoe. I already bought seven Christmas trees. Ok... it's not what you think. They're all very small. But still! I'm one jolly lady over here!

O' Christmas Tree O' Christmas Tree...

We'll be having our first Thanksgiving feast this Saturday. For some of our friends it will be the first time they've seen me up and walking in five years. Everyone I know has been using the word "miracle" - myself included. So what better time to celebrate than the winter holidays? I'm going to shine brighter than the brightest Christmas lights this year with joy.

Showing Up

My Mom likes to say that "Life is all about showing up." To me what that means is I need to make the effort to put myself out there as much as I possibly can. As much as I physically can. 

"Chat" bike ride at night

Although life happens at home, in my pajamas, declining party invitations. It also happens at the party in my nice new dress. It happens when I say "Yes" and engage in life outside just as much as inside. 

Humans are social creatures. We need to be around other people. That's why COVID was so impossible for so many people. Isolation. Being chronically ill limits how much I can be out in the world. It also limits what I can still do since COVID is still very much alive and contagious.

Coffee with Mom in her festive home

Sometimes "showing up" can look like entering a poetry contest from home or encouraging someone on Instagram. Other times it can look like spending my Mom's birthday at the zoo or having coffee at her house. To me engaging is simply making an effort. Not letting my pain and illness take over me and keep me in solitude. 

Enjoying Zebra at the Zoo

Thanks to my family and friends I have near constant engagement and many ways in which to "show up."

Max cuddle

Never NOT Scary

I missed an opportunity.

I really should have done this post in October for Halloween.

Ah well. For some the winter holidays are even more frightening.

Like "What mobility aid will I need for which house?" "Will they have gluten free food for me?" "What time will it start?" Or "Will I be able to go at all!?" OOoooooOOOoo. Scary.

But what I find the most scary is when my abilities change. Sometimes it's a slow change. The slow boil that's hard to notice. Like not being able to change light bulbs anymore (especially above my head.) More often then not however it's something I used to be able to do one day and then I can't do it the next. Like...

• Walking around the block
• Painting my nails
• Baking
• Staying awake all day
• Driving

You get the idea.

And what I'm learning as I progress down this road is that when it happens it is never not scary. It's never not painful. It's never not alarming. It just doesn't get easier. Then the once unthinkable becomes the norm. Just like COVID did for so many millions of people. 

I don't know how many more of these landmarks are ahead of me. All I can do is savor each moment and enjoy what I CAN do while I can still do it. 

Reflecting on 2021

 

This year has come with many gains and loses for me. I lost my beloved Nana in mid-November. She was a second mother to me. Even though someone slips from the evil grasps of pain, it's still a loss. I know she's no longer suffering. But I also know I will never see her or hear her sing-song voice again. I kept some voicemails she left for me over the last few years and I'm grateful to have them. She had such an infectious laugh. One of my favorite things about my family as a whole is that we have all maintained our inner child. I can't say that for most people.

I also lost my sweet puppy girl of 16 years, Sweetie. Which I wrote about here. My son moved out of our home in an explosive way. That felt like a loss. And I felt like I finally had time to mourn my lack of ability to work. 

But my life is never just about loss. In fact every time I have a tremendous loss (like no longer being able to work), I also tend to have a huge gain (like my mother moving around the corner from me after being in England). 

So let's talk about my gains this year. 

Right up there with getting my clinicians license is my new fella Max. I worked very hard for that license. It was the climax of my education and training. Two thousand hours of working with clients, suffering through TB treatment, a total hysterectomy, a brain tumor and the start of my Mitochondrial Disease...WOW! For Max to be just as great speaks how important he is to me.

Another bright spot of my year was how much I was able to reconnect with my friends and family. My husband and I had a blast at "Friendsgiving" in November. We saw a lot of family that we missed last year. I had a life-changing heart-to-heart talk with my best friend since first grade. In short, I basked in the company of other people.

I like to think of myself as some kind of "Uber Introvert" who doesn't need the company of other people. But that's a lie I tell to protect myself from feeling rejected. Honestly I love to be around other people. And I'm doing much better at letting my limits be known.

Here are just a few things I want to remember that happened this year that were positive:

• I spent time with my Grandmother-in-law. One of my favorite people in the world.
• I had a lot of laughs with my Mama (just like last year, but it's important to savor those moments.)
• I produced some truly horrible art, but had fun doing it.
• I took some fantastic photos.
• I found new ways to do the things I love (asked for help, waited till later, worked around my disability.)
• I stopped fighting the need for rest.
• I went to the Monterey Bay Aquarium when they were practically empty. A dream come true!
• I saw the Mendocino Botanical Gardens for two days with the love of my life.
• I was finally approved for Whole Genome Sequencing along with my son and mother.
• We built our dream patio, complete with waterfall!
• I got my little room back (once my son left).
• I learned I can drink red wine again with some magical little drops that remove the sulfates. 
• I was kissed and hugged about a million times.
• I got back down to a weight that I feel ok with. Not perfect, but better.

Just looking at this list makes me feel both happy and proud. I love my life, even with its limitations. I am safe, warm, fed and very loved. I wish everyone in the world could say the same. That's my wish for 2022.

Life Goes On

 Sometimes life can click along with nothing changing for years. Then suddenly I can have months, weeks, days where things change so fast it's hard to feel present.

I recently lost my precious Sweetie girl. She was my canine companion, my fur baby for 16 years. I feel lucky to have had her so long. I was also aware that super old age really sucks... even for animals. I would say she was "not her best self" for the last two years of her life. Joint pain and dementia had set in. We did what we could to keep her happy and comfortable, but in the end she didn't even want to be touched much.

From the earth we are given and to her we one day return.

In the end she went quickly, thanks to veterinary medicine and our fast actions. I am grateful for her precious soul to have been a part of my life.

Now my grandparents are also facing a difficult end. Death that comes swiftly in the night is a rare blessing. Usually fog and pain are there years and years before death finally comes for us. I for one will welcome Death like an old friend and relish the sweet release when it's my turn. Pain is for fighting. Not death. Death is there to set us free. I never understand people who want to fight death. Even as a child that made no sense to me. 

They are very far away from me, both in distance and in life but that doesn't stop my love for them.

And then there was joy!
I found a new little boy needing a home and love. This is our brand new Miniature Pinscher named Max.

Animals give us so much love and teach us so much about life. Like all of nature, we just have to pay attention to learn.

What has also been going well is the help I've been getting for my health. My migraine neurologist is still out on maternity leave, but I'm receiving my Botox every 3 months. I also just had my bi-annual check in with my muscular neurologist. That went well. I'm having a lot of pain and weakness in my neck so I'm getting fitted with a special neck brace to wear sometimes. They think that will help. I'm also getting new wheelchair tires and batteries soon.

I had my eyes checked and the optician is recommending I try "Prism" lenses. Apparently my eyes aren't tracking together and the prism helps that. It may also help my migraines.

Life is going quickly.

The holidays will be here soon. Thanksgiving, then Winter Solstice and Christmas. I feel like if I even blink I will miss them. I'm just trying to be mindful and enjoy each moment as they come. Being present in the present.

Holiday Week In Pictures

Hello friends and happy holidays! I've been wanting to post this blog of "pictures from my week" for a few days now. But you know... holidays. Here's a bit of a photo montage of what my week leading up to Christmas was like. Just a taste if you will. I hope you find it fun and helpful.

I do have a few outside links to items if you click on some pictures, but once again I received NO kick back or incentive for doing so. I just like to share helpful information. 

A Spoonful of Hope

Spoons come and they go. They are coveted and fleeting. I never have as many as I wish I had and I struggle to use what I do have in a way that enriches myself and those I love. I ask myself all the time now "does this matter? Is it important? If I can't answer "YES!" Then I really can't afford to spend a spoon on it. Sometimes even if it is important, I just don't have any spoons left.

This weekend was very full. It was my sister-in-law's 50th birthday party and Father's Day. I knew it was going to be busy, full and stacked high with importance. I tried my best to rest up and plan my spoons as best I could. But the tricky thing about chronic illness is that spoons don't work that way. You can't stockpile them and save them for really important moments. Even though I try.

Spoons are like most things in nature. Fleeting and unpredictable. Saturday was good. I tried to not "over do it" at the party so that I'd have "plenty of spoons left for Father's Day." Forgetting that it doesn't always work that way. So Sunday came and I was wiped. Not enough spoons to celebrate it "the way I thought it should be. The way I really wanted it to be. The way I thought my husband deserved." Of course this all led to me feeling "not good enough, frustrated, upset" and even more exhausted today (despite my wonderful man literally taking me home and sticking me in pajamas after I just couldn't be out anymore.)

Despite my best efforts I let "should" take over my "can." I stubbornly refused to listen to my body till I was on the verge of tears. And when I felt like I was "ruining my husband's day" he just gently assured me that I did no such thing and that he was very glad that I told him I had to go home and couldn't be out anymore.

Nature teaches me to listen and watch. To have awe for the things I can do and patience for the things I can't do. To savor moments as they pass because (like spoons) anything worth treasuring will for sure be temporary. After all, everything is temporary. 

Even though I'm exhausted today, I'm hopeful. My doctor got me a new rheumatologist and I'm seeing him a month. This is the first time a specialist got me in to see them in less than 3 months. I'm grateful to be expedited. 

My upcoming "tour of immunology" looks like this:

This Thursday = full spine and neck MRI (it also happens to be Summer Solstice)

June 27th = new neurologist for my neuropathy

June 29th = my 3rd physical therapy appointment

July 13th = back to my primary care doctor for a check in

July 19th = first appointment with my new rheumatologist

When my physical health is compromised it's easy for my mental health to try and follow. A helpful trick is to list 3 things that I'm grateful for each day. So here's my 3 things for today:

1) My husband, his support and love. He helps me take care of myself and makes me smile.

2) My dogs. My little one always know when I need some rest and she loves joining me in bed.

3) "I Love Lucy" - one of my favorite shows. Laughter is great medicine.

(And one to grow on: That I have health insurance! Always grateful for that.)