Mother's Day

Mothers Day….I can’t give you the definition of a mother, not after all the different relationships I have seen and been a part of…But I can tell you a wave of emotion takes ahold of me when I wake up that morning. I am a mom of four, a step mom of 4 more, and  a piece of me is with all the moms I talk to and support. I am humble and in awe of the strength I see. The moms who fight for care, and medicine. That sacrifice all they have for their babies.  And all of my children have taught me a lifetime worth of lessons. And all of them different pieces. Strength, humor, patience, intellect, perseverance, humility, tolerance. Mostly unconditional love.

My mom got sick when I was 15. My early memories of her were many. She was beautiful I know that. I know a lot of people say that, but she really was. My friends older brothers walked by our house a little too much, my father got into arguments at bars over how many men stopped to talk to her. She had this quiet, modest beauty that is rare and stunning. She didn’t speak her mind as often as she should have. She put up with being a working mom when she so desperately wanted to stay home with my sister and I and my little brothers. She feels so much guilt over that but none of us were bothered by it.   I remember her letting us sleep in the back of the car with sleeping bags on the way to daycare at 6am, I can hear the country station she was listening. KYCK fm. She was singing John Anderson “Swingin”.  I remember her yelling at the daycare lady who made me honey sandwiches for lunch every day and refusing to bring me back. I remember her singing along with Stevie Nicks and Fleetwood mac vinyl albums, and making chocolate oatmeal cookies and buns from scratch that she covered with dishtowels overnight.  I remember her suntanning on the deck on the brown and white lawnchairs, and showing us her yearbook with the maroon leather cover.  I remember her carrying my little brother  on her hip at the waterpark in Rapid City, her packing Tato Skin chips and cheeto snacks and Shasta pop for the fishing weekends at the lake, and loving the animals at the zoo many summers. Always in the background, always wanting to watch horse movies and Steven Segal, and game shows. Making me cheez whiz toast when I was sick, and cream soda floats,  and always being silent when my dad told or asked her anything. I certainly got my endurance from her, and my tenacity. When she didn’t agree, she wasn’t loud or confrontational. She just went through life with an optimism and spirit that I have never had.

MS is a silent, horrible life stealer. The first time it scared me she was crying, and she couldn’t walk down the stairs. I was 15. I didn’t know why she kept screaming that she couldn’t walk. I didn’t know what to say. I tried to help her up, and I couldn’t. This was just a tiny sliver of what was to come. Watching her rollercoaster of health and emotions was harder than anything I can remember.  She was still mobile when my first son was born in 1996. She took him looking for frogs, and read Peter Rabbit to him, and told him he would be a cowboy.  Being a grandmother was and still is her greatest joy. She has 13 beautiful grandchildren now, and an angel baby with her namesake to be proud of. After Chandler, and Noah (2003), she was needing a walker, and eventually a wheelchair. By the time she met Brady, Elliott, and Ethan (2007), she had pneumonia many times, she had fallen and hurt herself countless times trying to move motorcycles, and care for herself. She didn’t want help.  She always said she was living out loud like her grandma Clara, who she called Grand mama. And she certainly had her Grand mama’s gumption. Even if she couldn’t make her doughnuts.  And by the time the youngest of the boys appeared, she would be a resident in a nursing home. At 57 years young. There is too much to put in this story about what went wrong, and what we didn’t do. I could talk about the hospice days with my aunts and cousins, the terrifying discussions with all the doctors that I listened to through a fog, praying she would pull through one more time, and watching the relationship between my siblings and myself dissolve, grow and change, and come back together with a new strength but adding to it a sad and distant somberness that wasn’t there before. But I can't stay there....

I will choose to remember the time she made my brothers Halloween costume (an M&M bag) from a garbage bag, the time she bought me the prom shoes with her money that my father said I couldn’t have, the time she bought a bright yellow bikini my father hated because she wanted to, the time she took away my tapes with the heavy metal music recorded on them because I would learn satanic things and told me to listen to Bob Seger instead, the time she bought me a cabbage patch doll for hugging my brother as our car spun out on an icy  I29 because she said “I saved his life” (Adam, you’re welcome), the time she taught me to put in contact lenses, the time she borrowed (stole) my lakeshirt sweatshirt because it fit her better, the time she let me bring home Muffin my first kitten, the time she beat my score on astrosmash on Intellivision, the time my grandma got me the same Barbie my parents got me for Christmas and I cried because I didn’t want to return one and make anyone feel bad so she convinced me they were twins, the time she vacuumed up my hair on accident, the time she sang at my first wedding, the time she laid eyes on my newborn boys, the time she had to cut her hair when it was too hard to curl anymore, the time she couldn’t come to my college graduation so she made me a card, the time she told me why my dad bought her yellow roses, the time she told me the story of not going to Prom, the time she told me what happened to her pet squirrel. I can’t fill 500 pages with the memories. But she gave me a lifetime of them, and a piece of moral compass, great skin, a fun sense of humor, and the ability to pick myself up after being knocked down again and again and again. Happy Mother’s Day to the strongest person I know. I love you, Mom.

 

Nikki

 

One foot in front of the other...

We are all doing the best we can. We really are. If that means we ignore the laundry, or cry at an IEP, or wear the same sweats for three days and eat cookies for breakfast...so what? We are survivalists of a different sort. Put me in the wilderness with a compass and some water and I will be throwing out the white flag in two days. (I don't like bugs, or peeing outside, or cold).
But deal me a hand that includes a bible of acronyms, a child who hates showers, eats five things, has me shopping on Amazon for special shoelaces and sensory sheets, who can outrun a cheetah, and is my height and four times as strong and I will show you strength I didn't know I had.
Most of you who know me, know that as my son gets bigger and stronger the very real chance of my getting (unintentionally) injured is real. He is learning not to lash out, learning to replace those behaviors. But it will still happen. Picking him up off the ground, avoiding thrown objects when he can't find the right words, running to stop him from walking behind a car that's backing up...Routine trips to the doctors office when he's terrified of shots..or afraid of lab coats...it's called hyper vigilant parenting. And it's stressful, it's relentless, it's draining and downright painful at times.
So what do you do? Self care? Ah yes, here comes more guilt! Yes, I eat a crap diet. Yes, I should get more massages, schedule me time, and date nights and learn to paint or some fulfilling hobby. I know the value of self care. I speak it, I preach to the choir. To the moms who say "I know, I know." You are coping. You are doing what you can with what you have. Don't feel guilty. Look back on where you started...it's a journey.
My April autism month advice to you is one thing this year. Do one thing out of your comfort zone. My personal challenge is this... I signed up for a personal trainer. Not for my summer swimsuit body but to protect myself from my child: to be faster, stronger, more flexible, and more resilient. Don't feel bad for me. It's  not sad. It's empowering. I will slowly build my ability to continue to care for my son. It will extend his time at home and (hopefully) lessen my stress.And  I don't feel bad for waitig this long. I couldn't take it on until now.  Could have, should have, would have...no!! I'm ready now. And will it be easy? No way. Will it be worth it? Of course. Slow and steady wins the race. Much love and hang in there.

Broken

All parents have tough nights. Nights where we want to check out, nights where we daydream about another life. One that's potentially carefree and in a different lifetime. Mine is one where I live in a studio apartment on a beach, and I paint, and cook organic, and give freelance consultant advice to large corporations.  I buy brie and fruit and use crocheted bags at the market. I have time to meet intellectual friends and discuss climate change and supporting the arts in school.
Tonight I tried to get a spoonful of grape Tylenol down my 14 year olds throat. See, if I want a gummi version (compounded medication at a specialty pharmacy) for his headaches, if will cost me $80 a bottle. I don't know if his headaches are allergy related like his dad's when he was young, or if he has a visual strain that is adding to the pain, or if it's stress related. All I know is he is in physical pain. He's non verbal. He may never be able to explain these physiological feelings to me. But I keep playing the part of his personal physician, of specialist, as sort of a health investigator... The denials for coverage keep coming. They tell me it's a convenience for me to cover this formulary of over the counter medication. They tell me we cover capsules, pills, tablets, liquids. Yes, you do. And all of those have been thrown up on me. All of those attempts when he was small, and I cried as I held his body down while his fought me with all his might while I jammed the little plastic syringe down his throat. As he grew older, the multiple adults it took to take him to an appointment for antibiotic injections when he had strep throat. Yes, that was covered. I cannot hold him down now. Autism has sensory issues he cannot help. It's not behavioral.  He cannot stomach the texture. The bitterness and feel of pills do not allow his system to accept any form of medication. Only the gummies he finds palatable and can swallow.
Convienence. For me. Tonight I offered a spoonful knowing he was in pain enough to keep grasping my hand to place it to his forehead. Enough times to get tears in his eyes, pleading for help. The first spoonful he tried and spit everywhere, the second he grasped my hand with such force he broke my nail.
Later when I was texting my nail salon friend for the millionth time "need a fix again please", I thought about the force it takes to bend a nail backwards and the searing pain I could still feel. As I made the appointment I could still hear him loudly verbalizing and trying to settle in to bed. We have both cried, both said sorry, and both still at a loss. He's now taller, and stronger than I am. I tried to hold him and tell him it was okay. I tried to feel better when my husband told me that he would be alright. This isn't alright.