Letters to Mom

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Dearest Mom:
I knew, long ago, that I would feel completely lost without you in this world. There are so many ways I miss you I cannot even begin to describe them. I know people try to understand that I’m still mourning. You’ve been gone since June 15, 2013 but it’s barely been a breath in my world. A ragged, dragged in breath between sobs that shake my soul and seem as if they’ll never end.
To say that I miss you doesn’t even come close to what it’s like without you. My life has been ripped apart, and yet, like all my siblings, I have to go on with it. Daniel’s five days in the hospital (where we had an altar with your photo on it) ended with him needing two more respiratory treatments, and his cough is already sounding worse again after a week at home. I don’t know if I can live through losing both of you. I watched your deep sorrows (and joys) throughout your life, and know each of your children had a special relationship with you. Ours seemed to diverge in unthinkable ways at times, and at others seemed to mirror each other. You lost a brother, I will lose a son. You were never quite the same after he was declared MIA, and I have never been the same since Daniel’s diagnosis. I’ve always felt close to your side of the family, and yet I don’t know any of them. I know it is, in part, because you said I reminded you of your mother, although I can’t imagine anyone less like her than I see myself to be. You said I “saved your life” by being there, an innocent young girl with big brown eyes, during some of your darkest times. Times when you needed to know innocence still existed, and I had my child’s view of you as perfect, of your love as perfect, that helped you feel your life was still worth living in some of the hardest days you faced. (then I lost my innocence and caused you some intense worrying, but our connection always felt open) I always saw you as Audrey Hepburn, grace personified, but with an English Garden soul. You didn’t share your most challenging moments with more than a select few. Mostly, you listened. To all of us. Friends, family, people you barely knew. I’ve inherited that from you (or learned it) and I’m so grateful. I let you down most in the last couple of years, when all my sisters called you daily, and I barely managed it once a week. I didn’t want to worry you, and so many of my days were filled with sorrow. Some of it due to depression and letting my “self” get lost. I didn’t want to call you when I was weak, especially once we lost Dad. We’d gone through so much together, I somehow couldn’t bear to talk about our shared loneliness (my own more self-incurred, yours because of the circumstances of your birth and how your life unfolded).
You made Dad’s funeral a hero’s tribute, full of all he accomplished, his honors, certificates, and all he gave to our community. Who will come to your Memorial Celebration Mom? You, who always passed up the glory to let others shine. Those people who really knew you know that Dad, as amazing as he was, needed you as his compass. Always willing to let him have the spotlight, whether holding his hand and heart or holding him up in those last years when dementia robbed him of everything dear to him. No one and nothing was more dear to him than you, sweet Margaret, whose brother carried a photo of you in his U.S. Navy Hat during WW II. where most sailors had photos of their girlfriends. You have been more dearly beloved to more people than can ever show up at your Memorial Service. Many of them are already gone from this “vale of tears” and rejoicing with you, I dearly hope, in that place of peace beyond this life. If there is a heaven, it is there because nowhere else would be fit for someone of such ethereal beauty of form, and of heart, as you. There are many letters, and memories to come. But the duties of my life are calling.
Know my love is with you still, and the love of all your children and so many, many others.

With All My Love, broken-hearted as it may be,

Your youngest daughter,

Janet

New day, new job

Today I start work for the first time outside our home in two years.  I was up until 1:00, up again several times because of pain, and am now  hoping coffee will pry my eyes open enough that I won’t fall asleep during orientation.  A part of me wistfully wondered what it would be like if our middle son, who is 15, was not afflicted with this horrible disease called Ataxia-Telangiectasia.  I wouldn’t be up so early, because he’d get himself ready for school.  He wouldn’t have to suffer through 5 respiratory treatments along with two other liquid medicines and four pills.  He’s be able to sleep later himself, and the dark circles that are a constant under his gorgeous green-blue eyes would be transitory.  Knowing our son, he’d probably have broken several hearts, or at least have had several girlfriends by now.  Instead, every moment he spends awake takes more energy than I can imagine.  He has become left-handed, not by choice, but because his right hand shakes so much he can’t really use it for much.  Video games are becoming harder and harder for him to play, and he has a two-hour round trip bus ride to get to a school where there are kids he feels comfortable with.  Kids like him.

In addition, he’s been coughing for weeks now.  His doctors look at me sympathetically, and say there’s basically nothing else they can do that won’t make his life even more miserable than it already is.  I’ll spend the day worrying about all of my kids, but especially him.  The bright spot was a gift I was able to give him last night.  When I reminded him that I would be working today, he looked stoic but depressed and said, “And I’ll have to have some nurse come in and take care of me.”  “No honey,” I replied, “You will always be my first and most important person to care for.”  I may have to lose some sleep, but to see the look of relief that came over him when he realized that for now his life would stay basically the same…there’s nothing that I wouldn’t be willing to give for that.  I can’t help but think of my husband’s parents when he was young and in the hospital for weeks, months at a time.  His Mom would come in and out during the day, and his Dad would come after working all day on his feet doing hard, manual work, and spend the night.  This pattern was repeated constant times, with his sisters at home missing their Dad, I’m sure.  They didn’t complain though, not one of his family.  Just as with our son, his family knew that the suffering their child and brother was enduring was far worse than whatever they were giving up to help him.  They had another characteristic that helped them.  A deep, enduring faith in God.  It may have been shaken at times as they had to stand by, as I do, and see their son suffer, but somehow they held on.  I pray with all my heart that I can find just a little of that faith myself today.  Some link to spirit that helps me keep walking through the day, smile with my new co-workers, and drink coffee.  A LOT of coffee.  Namaste’, and may God Bless all of us on this spiritual journey in our human forms.

Letting go of my daughter.

Mindfulness is a practice of staying in the present moment with your experience, regardless of what it is.  Pain, joy, anger, peace; whatever comes up.  My daughter recently went through a stage of wanting to be close to me frequently, to spend time alone together, and show her affection openly.  There were times when it was irritating to other family members who wanted my attention, but I loved it.  I adore my boys, and having sons is an experience precious in its own way.  Feeling that bond with my daughter was priceless though.

Now, in what seems like a matter of moments, she has become moody, distant, and wants little (if anything) to do with me.  We used to text “I love you SOOO much” back and forth to each other; smiley faces, and hearts flew across the wireless network between us.  These days I consider myself lucky if she says, “me too” when I say “I love you.”  This child (who is my youngest), was the last to give up our nighttime ritual of  “kissing hand” (copied from the renowned children’s book), and blew me kisses from her bed as I went through her doorway at night, then when I reached the landing, and again when I was all the way downstairs (with me blowing kisses back).  In a single night she disavowed all of it.  She lets me kiss her on the forehead at night now, and give her a hug that she doesn’t return.  The pain of this rejection has been very hard to stay with in a mindful way.

The other morning my daughter was using her now all too common clipped answers to my questions, and I felt anger rise up in me like an earthquake.  My husband was in the kitchen at the time, and as he watched helplessly, I walked away (hearing him whisper, “please tell your Mom you’re sorry”) and retorted, “that’s okay, if she wants to spend all her time hating people that’s her choice.”  Immediately, I felt myself transported back in time to a moment where I told my mother (at close to the same age) “you don’t really love me.”  When my father heard this, he ripped me apart with his words, and his anger reduced me to microscopic size for saying something so hurtful to my Mom, who I knew loved me more than her own life.  Ouch!  A sense of deep shame washed over me, and an indescribable helplessness.  I had purposely hurt my child, after vowing I’d be different from my own parents, and there was no way to take it back.  Shaking, I walked over to her, took her hands in mine and said “I’m so sorry.”  “I felt hurt because of the way you were treating me, and I purposely said something to hurt you back.  It was childish, and small, and I wish with all my heart that I could take back the words, but I can’t.  I know you don’t spend your time hating people.  You are a loving and devoted friend, and have such a kind heart.  What I did was wrong, and there is no way to make it up to you.  I’m so very sorry.”  (tears were in my eyes now, and in my husband’s)  Looking at the floor, my daughter replied, “it’s no big deal Mom.”  “Look at me sweetheart,” I pleaded, and when those huge, sky-blue eyes met mine, I could see the wall I’d created between us.  “It IS a big deal.  I’m an adult, and I acted like a 2-year-old.  I’m so very sorry, and I will try to make it up to you somehow.”  “Whatever,” she replied, “I didn’t even really hear what you said,” and she dropped my hands.

This is what mindfulness can help you avoid.  Pema Chodron once said, (and I’m paraphrasing) “A moment of anger can destroy years spent building trust.”  I know the truth of that from BOTH sides now.  I can only pray that if I keep practicing I can prevent this from happening again.  Letting go of my daughter feels like having my fingernails slowly ripped off, one by one.  At the same time I’m so proud of her and the young woman she is becoming.  She’s developing a great relationship with my husband, her Step-Dad, after years of him feeling the rejection I do now, all while staying calm about it around her.  Parenting, like growing older, is not for the faint of heart.  It is one of the most difficult journeys we make in life.  I’m still ashamed, remorseful, and contrite, but I hope that perhaps some wisdom may have come from this that will help me keep my mouth shut when this happens in the future.  I wish the same for every one of us.  Namaste’.

Thoughtful blogging.

My last blog post wasn’t very thoughtful.  Hopefully people read all of it and didn’t stop with my whining and complaining.  (oh wait, that WAS all of it!  : D )  Nothing in life comes with guarantees, and I’m very lucky to have the wonderful husband I do.  The fact that I get triggered is my issue, not his, and meditation is the best antidote for that particular problem.  Our couple’s therapist says we are on opposite ends of the spectrum in reference to the Mars/Venus characterization.  I’m as emotional as you can get, and he’s as analytical and logical as you can get.  I’m a female Kirk to his Spock – ha!  For a while our therapy sessions would start like this;  “So, what major life events have happened since our last session?” because we fast forwarded through so much.  In the time most couples would have had decades to go through issues, we’ve had months or weeks to go through.  My husband has honored the vows he made on the day we got married every single moment of every day.  He’s had catastrophic health events happen, plus taking on a whole “needy” family.  He wouldn’t characterize us that way though, he’s not that kind of man.  He really is a prince, and he has given us stability.  While I spin around like a broken accelerator dial on the dashboard of life, he keeps us all on cruise control.

On top of that, he’s helped me to stay more balanced too.  He’s a great Dad for our kids, and he’s the most virile man I’ve ever met.  In other words, the chemistry is still there and I can’t imagine it ever not being there.

I hope this blog entry is more thoughtful than my last post, which was written by Mrs. Hyde. ; <   I try not to let her take over too often.  We’re all human, for better or worse, and the best we can do is keep working on lengthening the pause between action and reaction.  In my case that is going to take A LOT of hard work!  Laying on the grass, even if it is brown from lack of rain, and picking Queen Anne’s lace on our family walk and roll after dinner (two bipeds, two wheelchairs, three quadrupeds/canines) can do a world of good in changing my perspective from that shrunken, self-absorbed me to a woman very grateful for all my blessings – with my husband at the top of the list.  Peace and blessings to all.  Namaste’.

Perceptions

I spent a lot of Tuesday feeling guilty about being pampered by my sister on Monday.  What a waste of time.  Yes, some bad things happened while I wasn’t home, but good things happened too.  That Tuesday, after many phone calls, and keeping my disabled son home from school sick, I finally got some good news towards the end of the day.  He had been approved for a new nebulizer, plus a hugely expensive medicine (two actually) along with vitamins designed for him, and it was all covered by insurance.  We have to wait until Friday for the new meds and the nebulizer but it was such a relief to hear he would be getting the care he needs.  Even if I AM the one who will have to deliver that care.  The drug companies are easy to demonize (and much of it is deserved – there must be a better way to spread out the cost of research than charging thousands of dollars a month for medicines to keep children healthy, out of the hospital and ALIVE)  In this case my son will have close to 30 minutes shaved off the time he spends with a mask on his face getting medicine aerosolized and into his lungs.  That’s a big deal when you’re 14, and have been getting nebulizer treatments most of your life. I’m not sure if it was his pulmonologist who pulled off the miracle, or if it was a company willing to fight for insurance payments (okay, I’m a bit cynical) but I DO know I’m glad.  It will benefit my son, and so it will benefit me and our family as a whole.

As we celebrated Valentine’s Day Tuesday night, I tried to explain to my other two children how much it hurts to have to do things for their brother that I know he hates, like respiratory treatments (he had already left the dinner table).  Having to do things that your child hates day after day  wears you down.  My husband tries to help as much as he can, and it isn’t easy for him physically.  Between the loss of his hip years ago from a bad surgery, and the rebuild of his lumbar spine required after decades of paralysis, he’s lost some of his trunk control, so it’s easy to fall out of his manual wheelchair when he leans over to put the mask on my son’s face.  He takes the chance anyway though, because he knows it helps me.  I didn’t get any flowers, chocolates or diamonds (after three lay-offs between the two of us in the past four years?).  Instead,  I got understanding for my frustrations, a celebratory partner in our son’s medical treatment, and someone who helps me at every opportunity to lighten my load.  Considering the depression and grief that can become paralyzing at times when my son has “had it” with all the treatments, medications, and limitations on his life, I couldn’t ask for a better Valentine.  Thanks honey.  True love is not something you can get from a card – it comes from someone caring enough to  help when things get hard, to listen when you feel like you’re losing your mind, and hold you as you cry when your children have had a bad day. (or if you haven’t been able to have a child you desperately want)

Perception colors everything.  I could have stayed in a state of guilt about having time with my sister and continued the “second arrow” the Buddha talks about.  I could have stayed mired in our son’s pain, and my own, or felt resentful about not getting a flowery Valentine’s card, a token gift, or something similar.  Instead, with gentle reminders from my husband, I was able to shift my perception and that makes all the difference in how you see AND how you receive things.  Try noticing the little things your loved ones do for you, instead of pining for the big flowery gestures that can just as easily be carried about by a disengaged philanderer as a mate who truly loves you.  A late Happy Valentines Day to all.  May you love yourself (which is a huge piece of work constantly in process for me) as much as you want to be loved by others;  and may your perception be colored by an openness to miracles (or just good things happening) rather than whatever your wounded self thinks you “deserve.”  Blessings, peace, and Namaste‘.

How do you mourn?

I would love to hear feedback from anyone who happens to read my blog about the question that serves as it’s title.  Some losses are immediate and final – for example the death of a parent.  Other losses just go on and on, like looking at the sweet face of my middle child every day and not knowing how to mourn what has been taken from him by the roll of the genetic dice.  Finding something as simple as a pair of pants he can work with is like trying to climb Everest.  No kid wants to look like he’s wearing disability clothes and at the same time, my darling son is wise enough to realize that if the waist doesn’t have elastic (so he can pull them down), he’s not going to be unbuttoning metal buttons or even unzipping a metal zipper on a “rockin” pair of jeans.  Neither of us want it to be that way, but that’s the way it is.  I have sensitive children, whether through genetics or from them watching my own reactions to things that come up in life.  We’re working with sweatpants for now, and it’s better (obviously) than when my husband was paralyzed around 1972.  On a scale of 0-10 in mourning this is nowhere near a 10, but this is just one issue that we have to confront.  Watching the world fall apart (seemingly) gritting our teeth through another lay off (my husband’s 2nd in three years) is much more frightening and painful.  We’ll find a solution to the clothing issue, but the lay-off, the political climate that went from hope to despair over the course of the past four years, recovering from surgery, and coping with the isolation that no one tells you about when you get a diagnosis that makes your child “special”; those are deeper cuts to the fabric of the self.

Personality has a lot to do with mourning as well, some people are better at picking themselves up and moving forward.  Their feet don’t seem to get stuck in the tarry “gunk” that sucks some of us down.  I tend toward getting stuck through a combination of genetics and the way I was raised.  Because of that, I would love to read your stories of getting over and past ongoing mourning, the kind that is a wound that never completely heals.  The most basic comfort is still having my son to hug and hold, his humor that surprises and delights us, crying together over losses, uncountable moments we experience each day.  On dark days , your suggestions may help in ways you can’t know, nor can I, yet.  I hope others may be helped as well.  This feels like a hemorrhage of grief, that slows down at times, but is gushing again before I realize it.

May your pains be bearable; may the sun come out after rain and startle you with the beauty of a double rainbow, may good news outweigh bad, and may you feel whole; held safely by a universe unimaginable in its complexity, majesty and vast distances.