Saturday, February 28, 2009

Safety, Disability, Kids (again)

First there was the potential of someone randomly trying to assault youth near where my church is located. And then...

Yesterday I went to the jewelry store to pick up earrings and get a new chain for my necklace. I wheeled up to the counter with my 6 year old daughter and some guy was there with a receipt. He was upset--yelling profanities, pounding the counter hard. They asked him to leave. More profanities--"I don't have $3000!!!" I'm not sure what the issue was. I was hoping he didn't have a gun because he seemed either ready to hit someone or ready to pull a gun. They asked him to leave 2 more times. I took my earrings and went to the other room.

He left (not sure when) without firing a gun. So I asked the sales people if they were worried about something like that. They said they were ready to call the police and that the police are really fast to get there (since they're a jewelry store). All I could think was that, no matter how fast police are, it does not take long to fire a gun and there were 5 of us right there. Maybe I'm over-reacting, but I have never felt so vulnerable.

I had someone accompany me to my car and the guy was still in the parking lot. Good to be accompanied when the wheelchair spots were in an unlit area and off by themselves, and then there was me in the wheelchair and my miracle daughter.

I'm not sure what to think of all this. It's a scary world. These aren't good economic times. And that can lead to scary situations.

Thursday, February 26, 2009

Contemplative Prayer

Lent is here and our pastor suggested we pray more. A good idea. I'm finding the time to do so. It's a contemplative thing.

In the Ash Wednesday service, the Gospel lesson was on going into a closet and praying alone. I found that, in a sense, comforting, because I almost always pray alone. On Sunday I had gone to my car after 2 hours of reading at Starbucks. I found a parking space in the middle of nowhere. I stopped the car there, and there is where I prayed, alone.

I suppose these are more like conversations with God. I know I have done something, or I don't like the way I've treated someone, and I'm not sure that will change. I always ask God to help me let go of things--all the things that bother me, all the stresses. I ask for a sense of peace. Sunday, after my "conversation" with God, I went home and found my skiing photo was going to be in the USA Today the next day. That helped me let things go! I let things go until the next day when a problem started at work where someone will not leave me alone. So I've spent the week in this new arena, asking God to help me let that go.

May this Lent be a time when I can truly make the time to ask for these things, so that maybe, in my life, I will learn to let go and will find true peace.

Thursday, February 19, 2009

Lori's birthday--the impossible becomes a miracle

It's coming--tomorrow is my daughter, Lori's, 6th birthday. That amazes me now. I always wanted to have a little girl; in fact, I don't ever remember a time in my entire life when I didn't want a daughter. And then came the MS beast, and I thought it was impossible. Then my neurologist decided it wasn't a good plan. Then I went through my Ob doc, who thought it was possible, but let's check with the neurologists. Can you sense that I don't like neurologists?!! Again, the neurologist thought no, but I thought yes. So I went with that. 8 months later, right around the time my grandma left the earth, I became pregnant.

There were so many fears. I didn't even tell my neurologist until I was through 20 of the 40 weeks of being pregnant, and I never saw her again. I went to my rehab doc instead, scared, and told him. I thought he would flip. But instead, he did his usual thing. He kicked his chair back, looked pensive, took his glasses from his mouth and held them with his hand. Then he paused, looked me straight in the eyes, and said "Congratulations." And he meant it; with that, I knew this was possible.

One doc thought I would need a C-section. I knew I wouldn't. I knew Lori would be born early--I just felt it. 2 and a half weeks early, 3 days before my grandma would have turned 100, Lori entered the world. Nothing fancy about it--everything went smoothly. I breastfed--my MS improved while I did that. And there was the miracle of Lori Evelyn. I would sit with her and just hold her, and watch her sleep. And now we still cuddle. Not everything in life is possible; not everyone is given such gifts. But I thank God for the gift of Lori--so special, beautiful, wonderful.

Thanks be to God (and hello to angel Grandma in heaven)

Wednesday, February 18, 2009

A prayer for inward peace

Who writes prayers or thoughts to God in a blog? Well, here goes--someday maybe I'll look back at this entry. I have times when I "pray"--maybe it's somehow meditative prayer--to try to put everything together, or to ask God to help me do so. Here goes a summary version...

Dear God,

So much goes on in my life. Things weave in and out. Love and anger collide. Hope and frustration collide. The ability to try to understand and support others who do not reciprocate is incomprehensible. I am told I need to believe in myself. I am also told, and I know, that I am not in charge. God--you are in charge, and you offer support. How do I get from your support to releasing the negative energies that coincide with the positive; how do I get for your support to believe in myself? So at this time, I ask that you allow me to draw on the positives, still realizing the negatives are there, but focusing on the positives. Please let me feel your presence, the presence that comes when I least expect it, but when I need it most.


Wednesday, February 11, 2009

February 11

16 years ago today I was diagnosed with MS. It was a day that began with a series of random tests. Then, during an MRI of a region of my spine, all the tests changed. After 3 years of being told, "this can't be MS," I was told "you have MS." And what a journey it has been!

This week I had an appointment with my (awesome) MS doc who I call "Count." He told me I'm ok--my MS is treated kind of like a spinal cord injury because even after this long, the MS remains in 1 spot in my spine, but not in my brain. So my difficulties walking are because the spinal area is smaller than the brain. My doctor told me, well, legs, not as important as (he points to the following) the mind and the heart, which I must keep strong. But...something was not captured there.

Today I went and bought a necklace to capture the "forgotten." Good things can happen in February, really. My daughter was born in Feb, three days shy of when my Grandma would have turned 100 (she lived on earth to be 99). The necklace has an amethyst stone, the birthstone for Feb. And it is part of a cross, so the forgotten thing to keep strong is FAITH, which has seen me through so much.

Faith made me feel the presence of God, shortly after I was diagnosed with MS. Faith has allowed me to feel God's presence, through good times and bad. And in the worst of it all, when a reaction to steroids threw me into a deep depression, faith found me driving to church (which made no sense at the time), and faith let me feel God there, and I knew then that I needed help. Faith--through good times and bad--the support of God. And as I so often write,

Thanks be to God.

Saturday, February 7, 2009

Look my way and say hello

It's just the start of a letter to the editor--draft 1, so subect to much revision!

Earlier this year I attended the Kindergarten "get to know people" party, where I sat in my wheelchair and watched as friends who knew each other talked to each other, families who didn't know each other sat hesitantly at cafeteria tables and made light conversation, my family found our own place at the end of a cafeteria table where a wheelchair could fit, where no one else was, and eventually my daughter and husband descended a few stairs to join the fun where the new "Kindies" could play and dance. And I sat alone--my wheelchair was too wide to fit between the tables and the steps... I didn't knowing anyone--I was "the person in the wheelchair," and felt very alone. My daughter's teacher said hello, and the music teacher struc up a conversation with me. Those were the highlights of the thankfully brief evening.

Fast forward to ski season--I go to the Breckenridge Adaptive Education Center. At first I knew no one. But when I entered their doors (alone), I was immediately greeted, welcomed, and felt a part of everything. There was room for a wheelchair to move, so I met so many people, and there was a sense of togetherness. I felt valued as a person, where there was no hesitancy from anyone in regard to the wheelchair. Each time I go, I can't wait to see old friends, to see who I will meet, and to turn off the disability flag and instead be known for who I am, not for my disability.

Recently we got an "end of year celebration" announcement in my daughter's backpack and I was so glad that it will happen when we will be out of town. But I still struggle with how to change things--how to go from feelings of isolation to feelings of inclusiveness, where I don't feel like "the lady in the wheelchair"--what should people say, are they afraid they'll offend me, and on and on. I want to get to know people and if the wheelchair allows me to move and people see me, I'll try to get to know them. I've done this when possible.

What should you know? Know you can say hello to a person in a wheelchair. Know the person in the wheelchair probably wants to talk about anything OTHER than the wheelchair. Know the person in the wheelchair has a life, has friends, probably wants more friends, and almost guaranteed, wants to talk to you. So look down--that person may say hello and you may beat them to it. Ask who their kid is, which class their kid is in, where they live, etc. You never know--you may find an unexpected friendship and that would be a truly wonderful thing.

Friday, February 6, 2009

Disability, Parenting, and Safety

Today I got an email from the church that someone has been around the area possibly trying to assault kids (maybe just girls). That's just great. When everyone thinks of church as the safest place, we now have to be careful.

That makes me think about my time as a parent. Lori is almost 6 now and has been more independent than many kids her age. It's not that I don't have my eyes on her, but I have relied on a lot of parents to help keep eyes on her, particularly at church. In a sense, it's like she owns the church. She knows the building inside-out. And outside of church, I can't dart after her like most parents can dart after their children. It's really different. I have the advantage that Lori would ride on my walker when she was younger, and now she's too big for that but still rides on my lap on the wheelchair. But there are times when I can't be right there, when I suppose she could be easly "snatched." When we're home alone without my hubbie, we don't answer the door because I feel vulnerable.

I guess it's all somewhat confusing. And it seem to remain a world almost free of other parents who have disabilities, so it's isolating. For the most part, people help, but I don't think they realize the isolation, the frustration at feeling a bit reliant on others to help. And I really am sick of the comment to Lori, "Are you Mommy's helper?" No, I am the one with the disability. Yes, she helps. But she is a kid-let her live that. I am thankful she has been safe this long.

There should be a support group--parents with disabilities--where we can air our frusrations, but also air the joys of being a parent. There must be others out there.............

Sunday, February 1, 2009

Today--one of the best days of my life

Well, before today, this past week was horrible. So I thought of calling this post inclusion trumps exclusion. So, the inclusion part.

This morning, my daughter and I headed to Breckenridge where I, or we, ski. I've been thinking that I am resigned to falling a bunch every time I do the blue level (intermediate). I completely panic. But not today. Today I listened to Charlie (my instructor, but more of a friend), and just did what he said, and it worked! The impossible becomes possible, after a ferocious MS attack, after a bad week at work. This didn't make it happen (well, not exactly), but last night I talked to God--I guess that's what it's called--maybe contemplative prayer. I asked God to let me let go of the past week, and to be a part of the inclusive environment of the adaptive center, to help me let go of my panic. Then my daughter, who is almost 6, and I did a run together (green--beginner). She is awesome--has no fear-fast! That from a girly-girl! and the inclusion--I feel so myself there--so welcomed, such a part of it all. Everyone is welcomed and a part, no matter what their disability--accommodations are made, and everyone is challenged. It's like a home.

And the exclusion. Not today. Today I celebrate inclusion, being a part of something, feeling welcomed, loved, and when I did something I thought I would never do, I feell c elebrated. Thanks be to God for helping to let go of the past for a day, for helping me let go of panic, for helping me to see that people with disabilities are included, valued, loved, and celebrated.