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Bittersweet is Life

Bittersweet is Life

On March 29, 1999, I watched my daughter Stephanie Paige Steines take her last breath. She was born with a neuromuscular disease of unknown origin. It is something that stays with you the rest of your life, only time makes it hurt less; I no longer cry starting a month before her death, and that day, sometimes it passes without recognition. I always remember though.

stephi 001

While her health deteriorated, her muscles became weak, her breathing difficult, her eating nearly impossible, I had a weird dichotomy of experiencing the other side, the wonder of her twin, my daughter Kayla, as she grew stronger, hit her milestones, thrive.

But with each milestone achieved, there was something not completely right, there should have been two reaching these ‘normal’ goals.

After Stephi died, there was always a whisper of sadness through everything that Kayla did and though I promised myself that Kayla would never have to live her life because her sister died, she’d only have to live her life because Kayla was, the whisper, the hint, a piece of the whole was always there.

I hadn’t realized Kayla experienced that emptiness until almost 17 years later. Seeing other twins at school hurt, she wanted to scream out, “I’m a twin too!” I will never forget the time I was in a room with four other adults, and three of us gave birth to twins. As the two moms spoke of their twin issues, I wanted more than anything to chime in. But to talk of the loss carries a dark cloud over the conversation and it’s not always the right time or place.

The loss is not just my loss, it’s also Kayla’s. Even though she were 11 months old when Stephanie died, we both feel it especially during great achievements, a great moving forward, always knowing, someone else should be there too.

I feel it now as Kayla is ready to graduate high school, as she’s ready to enter college. I’m not just sad because my baby is all grown up. I’m sad because we are missing someone.

There is so much pride for all Kayla has been able to accomplish. Overcoming crippling anxiety, scoliosis, ADHD. She’s graduating with amazing grades, a high ACT score and was accepted into three colleges. She’ll be attending this fall on her way to full adulthood.

Time makes it less difficult and there are less tears, but it can never wipe away the sadness. I only hope I can make through graduation without the ugly cry.

100_0436Kayla 7th grade

 

Motherhood Uncensored

Motherhood Uncensored

Written on the ink pad app on my phone, while waiting for the doctor. All that’s been changed are spelling errors. It’s time to say what I need to say.

tired mother

It’s not a fight I wanted to get into. I didn’t want to gear up for more trouble, problems, and issues. Yet somehow I am.

We can say we want healthy children, normalcy, and a happy life. Smart, productive children, good in school and we’ll raise them to be self-sufficient, and confident.

Looking back on the carefully formulated plan, I offer a snort of derision. It’s complete and total bullshit. Because sometimes life just doesn’t cooperate.

After 2 1/2 years of infertility, and a miserable pregnancy, I gave birth to twins. It should have been joyous, it should have been my reward for the struggle of trying to get pregnant. It was bittersweet. It was a nightmare. ‘Now what’, I asked myself when baby A was born with a terminal illness. With one healthy baby and one not, I entered into motherhood under the worst conditions you could imagine.

There’s no worrying about raising confident girls, there’s only the daily struggle of keeping a child alive, of rotating nurses, doctor’s orders, do not resuscitate orders and hospice care.

When a child dies, you have 2 choices, step on the new path with your new life and the knowledge of what it is to bury an 11 month old baby, or you can lay down and die. I still had a baby to care for.

As I raised my twin less twin, I did it wracked with guilt. Did I do enough can I be enough?

I still couldn’t follow the plan because that second child had her own battle. Another fight, more advocating for my child. Debilitating anxiety, ADHD. Having to hold the hand of a child old enough to do for herself, fearful that adulthood, which one day will come, will render her incapable. A constant battle to raise her to support herself, handle a job interview, live on her own.

It’s not the usual and its exhausting, stressful and makes me numb. Joy is lost because the little things are big things and there are always issues.

My youngest daughter was my easy, happy-go-lucky kid. The one who found joy in everything. The cool kid who listened to 80s music on a record player, loved comic con, and simply allowed normalcy. Until it wasn’t normal anymore.

She came out as lesbian at 13. I told her I love her, it will be fine. If only that was the end.

There was pain behind those eyes, masked by a laugh. When you fly out of work one day because the nurse calls to tell you your daughter wants to commit suicide. The pain was there and she hides it well. The cutting up and down both arms is hidden by long sleeve sweatshirts in the middle of November. Depression drugs and outpatient programs are arranged and decided.

The storm at some point had to end.

oceanOr so we think. I’m so tired of the battles. I’m so tired of the doctors, the pills, the planning. It keeps me up at night because someone has to control it. That is me…mom.

It’s not over. It hasn’t really started. This newest battle I’m just embarking on. The one that my daughter feels, she was a boy all along.

I will never understand. All my weary brain sees is another problem. Another battle, this one, I dread. I know what’s coming and it isn’t easy.

Transgender. My kid. My world, as it implodes in on itself, I struggle to stand, to understand, to keep walking forward to the end of another tunnel.

It’s not about me, it’s never been about me and yet it is always me. What I wouldn’t give to simply raise my kids to be strong individuals, confident and happy.

Funny how somewhere in the midst of all of it, they finally are.

 

 

The Daughter’s Almost Fixed

The Daughter’s Almost Fixed

We tried a new therapy for our daughter. Exposing her to the everyday experiencing that most of us take for granted, the ones that make her anxious and worried. But she’s not so worried anymore. The therapist has explained to her how her preconceived notions about growing up and her life were lies.

She already holds down two jobs, gets good grades, cares for herself, does her laundry, you know takes care of herself. She’s worried about growing up. It’s been a painful process putting her in the position to do things that make her uncomfortable but with each exposure I can see her relaxing, her confidence grows and she no longer fights us when we say she has to drive. She even said she could when it rained rather than using that as an excuse.

I feel for the first time since the anxiety reared its head that there is a light at the end of the tunnel. Through the fear of wind, the holding up in the basement for an entire summer, the crying, the ADHD, the scoliosis, eye issues, wrist soreness, meds and physical therapy, there might be an end for her. A chance to simply enjoy life.

She’s been through so much and yet we push her through her “homework” her exposures, opportunities to learn how to simply be. Whether its how to fill out her deposit slip for her paycheck, or how to go grocery shopping and navigate on her own, with each experience she’s learning that she’s okay.

She may always be nervous and scared because we are who we are, but if we’re willing to take the chance and make the change, it will get better.

 

 

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