The Fog Year

I blinked and first grade and preschool are almost done for my boys. I know many parents say the same. Time flies, right? They’re babies and you take a breath and they’re boarding the bus to kindergarten. Very true for any parent. Although when you’re coexisting with a chronic illness that blinking breath is faster and the fleeting memories are fogged.

I’ve been sick since my oldest son was a baby. Always dealing with the waxing and waning of my health to some degree. Be it mental or physical. Often times after a rather nasty flare you’re left to feel like you’ve come back from a war. Better- but damaged irreparably in some way- physically and emotionally. You feel just a little more broken, the wounds are slow to repair and the scars run deep.

This was a particularly hard year for me. My disease had set up shop in my eyes for too long and I slowly became visually impaired. I saw my beautiful boys through a fog. Literally and figuratively. The fog of my damaged vision and the fog of depression that hovered all around me because of my sudden very limited abilities.

Years of steroids and inflammation had caused progressive cataracts and uncontrollable eye pressure (glaucoma) in BOTH my eyes. Driving was a done deal by the time fall arrived. All the colorful beauty of the leaves were washed out and the lights of Christmastime weren’t much better. I literally did my best to get out of bed and function. Meanwhile my kids lives went on. There were projects, class parties, play-dates, boo boos, first grade drama (aka who plays with who at recess), all this went on and I was there- I swear I was. Just not in the way I wish I could be. Getting through the day was rough. Actually rough is a gross understatement. It was downright exhausting. The most minuscule task was overwhelming.

The new year was not so celebratory. With a cataract and glaucoma shunt surgery waiting for me- how could I celebrate a new year when it would be like the rest? There was no new year, new me. Just a change from 14 to 15 and the same old roller-coaster ride chronic illness brings.

The surgery did help and a new lease on life was given. The roller-coaster halted for a bit and I was once again driving. Happily. My vision still zigzags between clear and slightly drunk- but I manage.

Now summer is upon us and the pending surgery to repair the left eye is next. My roller coaster of emotions are starting and it fogs the end of year activities for my boys. Including the pivotal moments that bring my 5 yr old’s preschool years to a close. Preschool is over? When did that happen? In the fog and chaos of chronic illness- that’s when.

I feel this year was a lost one. A year in the fog. I’m not sure how a year feels so paradoxical as it’s long yet so fleeting. I guess over seven years “in” with chronic illness I’m learning that’s how time goes- ever so slow and done in a blink. I will keep plugging away and hope my vision zigzags a little less so I can enjoy kindergarten and second grade- oh and the summer too. These beautiful boys of mine need their mama and one that sees clearly would be wonderful.

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A Motherless Mother’s Day with a Chronic Twist

Much of my life has been defined by not having my mom present. Motherless daughters try (or at least I do) not to let our mom’s absence define us- but it does. Sometimes daily. The reminders are there. Always. Sometimes subtle, at times profound. I don’t know what it’s like to pick up the phone and call my mom and share news- of any kind. I never had that. I lost her a month after my 13th birthday and remember her only as a child- not as a woman.

Sometimes the memory of having my mom seems like a dream and then there are times her absence- even 24 years later- brings me to my knees. Only a motherless daughter knows what it’s like to be fine and then have the agony erupt inside- all in a minute. There are triggers, of course. Some so minuscule- seeing a grandmother sitting at a baseball game watching her grandchild; watching a mother and daughter out shopping; then there are the trigger milestones she’s missed; graduation, wedding, the birth of my children. And now a milestone I was not expecting- a chronic illness.

My life is certainly not the way I envisioned it. I was always fiercely independent and strived to be everything the woman who put me on this earth would want me to be- nothing would stop me. Then- this thing came along with a whacky name I couldn’t pronounce – sarcoidosis (say that five times fast). Sarc quickly showed me who is boss and at times who is in total control- and sadly- that’s not always me. Often, actually. I shudder to think there may come a time my full-on surrender is granted to this sinister monster.

So this disease I could barely pronounce makes my mom’s absence pierce my heart. Again. She’s not holding my hand at the endless doctor’s appointments, nor is she here allowing me to lay in bed fighting off the latest knockout punch my from this sarco-something while she’s watching my children and making sure my house doesn’t go to hell. She’s not telling me I’m beautiful when the latest round of steroids makes me puffy and unrecognizable. She’s not there to tell me to stop yelling in my steroid-induced rage my family bares the brunt of. And she’s not there when the biweekly injection that keeps my illness quiet-not cured- stings like hell and I cry- longing for her to tell me it’s going to be ok- I kind of know that’s not true- but coming from her- it would be- at least in that moment.

In some of my saddest moments I do feel my mom’s presence and wisdom- even after all these years. My mother had a song that was “our song”. Melissa Manchester’s, “Don’t Cry Out Loud”. An odd song for a mom to dedicate to her 5 yr old daughter. But it was simply because of the beginning, “Baby cried the day the circus came to town- because she didn’t want parades just passing by her”.. that was it. I was a child who cried when parades ended. My mom would take me in her arms and hug me when this song played on the radio and I remember it like a dream and at times like yesterday.

This has been a particularly difficult year for me in my chronic illness journey. I listened to this song on the way home the other day for comfort and cried. I thought how symbolic the song is now in my life – and it goes way beyond those parades passing by. “Don’t cry out loud- keep it inside- learn how to hide your feelings” this is a huge aspect of my life as a woman. I wear the mask of the invisible illness. I’ve learned well in these past 7.5 years to hide my feelings- closet cry (or car cry). After a bad doctor day I’ve mastered pulling myself together and wiping my face so a smile is present for my children and others. I’ve learned the art of NOT crying out loud and hiding my feelings. Very well. That may not be the right thing but it’s often my way to cope. This for so many years was merely a song based on such a trivial thing as parades but kept her memory alive. And as I drive home the other day the significance of the song took on a whole new meaning. I try so had to model the strength my mom had. I am often told by those who knew her that I am like her- I sound like her, look like her. The song speaks to me again-  “I know a lot about her because you’ll see- the baby is an awful lot like me”.

I don’t want to portray all is bad in the whirlwind of ups and downs having a chronic illness brings. I’ve also mastered not being “broken”. Sure- it’s harder and harder to bounce back- especially as I get older and lose pieces of not only my life but now of my children’s.

Nevertheless- I push forward and have gained a kind of resilience that I only few possess- those chosen few who have been dealt test after test. I’d like to think that is where another part of this song comes in; “Baby can’t be broken cuz you’ll see- she had the finest teacher-that was me”. Thank you mom- 24 years later you’re still my “finest teacher”- teaching me to move forward, NEVER give up and to find the beauty and good in every day.

And thank you for that feisty little boy with the big brown eyes who was born on the day you died- 17 years later. My son and your sign that you’re still here- just not the way I want you to be. Happy Mother’s Day.