Tuesday, November 29, 2016

Acceptance.

I was sitting in my weekly twelve step meeting. I was to speak about the holidays.

I read page 420 out loud to the group: "Perhaps the best thing of all for me is to remember that my serenity is inversely proportional to my expectations...."

I sighed deeply after my reading was over...

I want to be in this place. I want to have this level of acceptance. But I'm tired y'all.

It's been ten years of constant life adjustments and grief. The list is long.
There's no end in sight. Nor would I want there to be.
I experience a sense of loss each and every day and right now the scale is tipped too far one way.

I've been collecting people in my mind. People I know now. People I used to know. People I want to know. People who understand. People who left. People who show up. People I left.
I remember them all.

I need to stop collecting and start accepting.

In this ten year journey with my son Dermot I have worked tirelessly at making myself a better human. A kinder being. A fair parent. A good friend. A tolerable daughter. An accepting sister. A compassionate soul that runs toward pain, not away from it. I expect others to do the same, but that's not how it works. I know that in my head, but when I get to the low place where I start "collecting", my heart forgets that it doesn't work that way. People's lives go on....

The book keeps telling me that Acceptance is the key to my relationships. "I must keep my magnifying mind on my acceptance and off my expectations, for my serenity is directly proportional to my level of acceptance."

Accept I must.


Sunday, August 28, 2016

Sunday morning.

I just walked a mile home from our church that just doesn't do it for me anymore. Three priests in a year. The first one was why we went. he was transferred up to north Minneapolis because in the Catholic Church they move the guys around every ten years or so (no tasteless jokes please).

We all drove to church. Dermot was really congested, but we were confident that he'd cough it up by the time we got there. No cough. I went in and Joe stayed in the car with Dermot and the suction machine. Waiting for the cough.

The boys and I sat thru the first reading, no Joe and Dermot. Second reading, still no Joe and Dermot. I texted (yes, in church!). They were headed home. We'd walk home. Only a mile away, no big deal.

I sat thru the homily. I struggled to stay engaged in the wordy "story" that used to be my favorite part of church. Ryan on one side, whining and fidgeting. Owen on the other sitting dutifully.

In my head I wondered how it would affect the kids if we got up and left. What lesson would I be teaching? Because all I wanted to do was take off. I looked around at all the families. We hardly knew any of them. Small talk was all we gathered from our experiences lately. Then I drifted into more thoughts...

What do people see when they look at my family? Do they see me as a "saint"? Do they fear the rawness of our situation? Is it just easier to not get too close to us? Why don't we get invited places anymore? Is it just easier to admire my "strength" on Facebook? Is it difficult to be friends with us because we walk around with an open wound?  Do I push people away? Is it safer for me to retreat and not risk new situations? Are Ryan's recent behavioral outbursts just a manifestation of our family situation? Is he so starving for attention that he says things to me that would make any "regular" mom freak out and call a shrink?

Finally, the priest was done talking. Not sure what today's message was. I know my message. Keep on swimming. Keep living. Keep trying. Maybe this isn't the church for us anymore. Maybe there's another place for us. Maybe I'll ask my other catholic friends about their churches. Maybe I'll investigate them some Sunday morning without Dermot. To see if it's safe. To see if the people are kind. To see if we will be accepted. Truth is I'll never know until we try. But then we'll have to try and that takes energy.

As we walked home down a shady 51st street, I endured an onslaught of comments from Ryan. He told me how much he hated me. How mean I am to him, how badly he wants to live in a different family and how he never gets to have any fun. I agreed with him. I told him that life isn't fair. Ever. I told him that I loved him and that someday he will remember this morning and think to himself how wrong he was about me. Until then, I'm ready to be the reason for all his problems. Gladly. He's only eight and none of the bullshit that he deals with on a daily basis is his fault. I'm 45 and I know that none of the bullshit I deal with is anyone's fault. It's just bullshit.

Wednesday, July 6, 2016

July 18th.

July 18th is the date of Dermot's surgery.

His spine turns in the shape of an S.

80 degrees.

His right side of his internal organs are getting smushed.

Lungs, smushed.

Ribs, so close they almost touch.

Shoulder protrudes outward.

Head and neck automatically turns to the left.

The hump on his back grows more prominent each day.

The brace that he wears doesn't seem to fit him anymore.

This didn't happen overnight. it's been a long time coming. every six months the x-rays prove that as Dermot grows, the curve gets worse.

The brace doesn't fit him anymore.

We struggle with the decision of surgery.

Dermot is a fragile human being.

Respiratory distress is our first concern.

Pain is our second.

Length and ease of recovery is uncertain.

Dermot's spine isn't getting straighter.

Were are in the midst of multiple doctor's visits.

Dotting the i's and crossing the t's.

Doing everything we can to ensure that the surgery is a success.

Pulmonologist.

Orthopedic surgeon.

Another orthopedic surgeon.

Special needs pediatrician.

Another pediatrician.

Neurologist.

EKG, and some other heart test I can never remember the name to...

Now comes the waiting.

The anxiety attacks.

The doubt.

The prayers.

The therapy appointments.

The asking for help....




Wednesday, April 27, 2016

Friend

She's going to hate that I wrote about her. She's not going to want to talk about it.

The first time I saw her was six years ago at a Kindergarten class party. Hands on her hips, speaking uncomfortably loud to her son "Sumner Mark!".

Who's that? I wondered. Her son was friendly and talkative, he knew more about Star Wars than anyone I knew. I would find out later she knew just as much and wasn't afraid to share it.

She invited Owen over for his very first sleep over, I was worried, he was only five. She said not to worry and rattled off a detailed itinerary for the evening to sooth my insecurity. She has continued to go out of her way to sooth my insecurities. She was enthusiastic about Dermot. Few other friends took to him like she did. Her comfort around him made me at ease with her immediately. She was a safe person.

There's a certain, I don't give a hoot about what people think attitude about her. Yes, she drives the appropriate Edina car, has the appropriate Edina house and was a bit too involved in the PTO politics at the school from the get go. But that's only what you see if you don't know her.

She is kind, hilarious, unapologetic, loyal, impatient, brilliant, honest, and surprisingly vulnerable if she trusts you.

On the outside we have almost nothing in common. I love NASCAR, she loves Star Wars,  I run, she walks. I pray, she thinks. I practice yoga, she can barely touch her toes. Before I met her I was convinced that requirements for a lasting quality friendship would have to be, having the same interests. Clearly I was mistaken. While she is mocking me for having too many knick knacks in my home (she is especially fond of my collection of ceramic cats),
I am teasing her for her obsessive purchasing of designer handbags.

My panic has been at a low hum for the last few weeks. Every so often I realize that time is getting shorter. There's a date set, a plan in order and change is nearly upon us.

My friend is moving. 1000 miles away. This is the woman that I have spoken with nearly everyday for the last year and a half, not counting the days she's had off for various Star Wars conventions and Comic Book festivals. I'm not quite sure what will happen after she leaves, but I know my life will be significantly different.

No "I'm going to Sam's Club what do you need?" visits.

No impromptu visits to deliver my cookie container back to me.

No more annual neighborhood garage sale.

No dropping off my boys at her house to sleep over while I'm at the hospital with Dermot.

No showing up at Children's ER with my essentials and a hastily made ham sandwich with mayo instead of mustard.

No meeting me at Abbott to investigate the reason for my blown pupil and drive my mother back to Edina.

No hanging out at her house to watch her play with the crazy dog after her boys are asleep.

Okay, let's talk about the dog. My second best friend. My running buddy. My partner in fitness. No more running with the copper bullet tied to my waist. The dog's endearing excitement whenever I come to the door will be sorely missed. My own dogs have never been that excited about seeing me come home!

So I know that just because she is moving doesn't mean that we won't still be friends, but my person won't be close. My friend that comes over and grabs the suction wand without fear or regret and cares for my son without any reservations will be 1000 miles away. The one that walks in and tells me to get it together and encourages me to make tough decisions and loves me no matter what, will be 1000 miles away. That makes me panic quietly in my anxiety filled heart.

I am blessed to have met her. I am blessed to be able to be a true friend to her, just as she is to me.

There's no gossip or expectations. No judgments or put downs. No conditions or requirements.

Just friendship. A rare connection that has taught me to be a better person in every single area of my life.

Thank you Lisa. I will be your friend for as long as you'll have me.



Wednesday, January 13, 2016

How it is.

I hung up the phone and cried. Cried for the umpteenth time. I got what I wanted from the phone call, but I'm not happy.

She was telling me how it was. She was telling me what to do next. She was asking, yet again if I was using the respiratory vest, when he was well. I'm not an idiot. I know you were shaming me. I know you have guidelines and protocols to follow. As do I. He has mucus, that means antibiotics. Plus extra nebulizer treatments and Predisilone and suctioning and respiratory vest and frequent position changes. I know what to do. Believe me, I know what to do.

So my one comfort was taken away this morning. Dermot's pulminologist office has always been my reliable source for antibiotics when he is in respiratory distress. I call, they prescribe, we hopefully get better. But not today, today the young nurse tried to tell me, how it was going to be. She tried to tell me to go two more days before we intervened. She wasn't going to win this fight. Not today.

I told her that I've been dealing with his condition for over nine years and that he doesn't recover on his own. I reminded her that I wasn't looking for a prescription for morphine, just Augmentin. I told her that her suggestions alone weren't going to help Dermot. Because they never have. But I was crying while I told her. Dammit! I'm tired of crying to health professionals who try to tell me how it is. I know more than anyone else "how it is". I told the nurse that I just lost my one safe place to call when Dermot is ill. Never before had I had to fight for meds from them. Now that sense of safety is gone, probably left when Dermot's pulminologist left for his three week vacation...

Here's the kicker. I might be wrong. I don't know everything. His cough might be from our need to increase the dosage on his seizure meds that causes more secretions and more drowsiness. Perhaps we could decrease the dosage and his breathing would be better, but then would the cluster seizures would come back?

This is the spot that makes it almost to much to bear. When I have to decide what it is. When I have to decide which of Dermot's medical professionals I should call today to see if they can help.

The lung guy who's nurse decided to ruin my day? The brain guy who's goal is to stop Dermot's seizures? The gastro guy who's in charge of his feeding tube? The new pediatrician who he's seen a total of three times and who promised to take a lead role in his health care? The Bone guy who's main goal is to operate on Dermot to straighten his spine? So many doctors are responsible for bits and pieces, no one doctor sees ALL of Dermot. That's my job, of which I am grossly unqualified and underpaid for...