Sep 20

Ode to Special Moms – Erma Bombeck May 1980

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Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.  Did you ever wonder how mothers of handicapped children are chosen?  Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia.

“Rudledge, Carrie, twins, patron saint, give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” says God. “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it.

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world, and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”

God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied.  She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, pen poised midair.

God smiles. “A mirror will suffice.”

Aug 16

Healthy, Sturdy and Strong

birthdayMy birthday always brings reflection, goal-setting/checking and in my later years, a whole lot of gratitude for who I know, who I love and who I am. While I don’t appreciate the wrinkles (and the money it takes to manage them) or the extra padding that has crept up on me as I turn 45, I woke up thinking about my middle-aged body and guess what? I’m thankful for it.

When I was little, I never got to wear the “slim” jeans that both of my skinny sisters did. Nope, I was always “regular” or “average.” Thank God Jennifer Lopez came along and brought my big booty into style. Still, it is human nature to want what we don’t have and I always envied and wanted a smaller frame.

Next to me is my skinny sister Betsey, the blonde is my skinny sister Blake and behind her is my skinny cousin Shelli.

Next to me is my skinny sister Betsey, the blonde is my skinny sister Blake and behind her is my skinny cousin Shelli. Here we are celebrating the man in the middle, my papa Olson who recently turned 100!

But today I woke up thankful that I am healthy, sturdy and strong because this is exactly who I need to be to take care of my son (my SUN). Now a 3rd grader, he weighs 75 pounds and is growing every day. I pray that at 55 I can still manage. I can’t worry about that now. If I have one piece of advice for parents of children with special needs it would be to take it one day at a time.

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So I gotta go now because I’m spending my special day with my favorite little boy – the reason I am who I am. Healthy, sturdy, strong…and happy.

Aug 10

The Journey Is Challenging But The Destination Is Worth It

Each year I start to freak out in April about what I am going to do with Phoenix in the summer. Miraculously each year things somehow work out and each August I think how did I do that? Should we venture out? Will it be worth it? Yes and yes. This was our best summer yet with trips to Vegas (to meet our new family member Oliver Broyles), Idaho (to celebrate my grandpa’s 100th birthday and a second trip to help my best friend from grade school fix up her new house), Utah and the Grand Canyon, lots of swimming lessons, five weeks of conductive education camp and a good amount of reading! I was even able to complete my second semester of school and work enough to pay the bills.

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The Linq

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Living in the big city with the power chair and the minivan, I take for granted how easy it is for us to get around. All it takes is a trip to snap me back to reality. Air travel is a handful. Picture me pushing Phoenix in his manual chair, rolling his toilet and trying to also pull the luggage and carry a backpack filled with an X-box and games. I rely heavily on the kindness of strangers. They come through about 80% of the time. The other 20% of the time, I take a deep breath and park Phoenix where I can see him, move the stuff a short distance, and run back to bring him along…repeat.

The journey is challenging but the destination is worth it!

Oh wait…the destination is challenging too! My parents have a picturesque cabin on Coeur d’Alene Lake in Idaho. I can’t deny, however, that it is getting harder and harder each year we visit. For instance, this is the first year Phoenix didn’t sleep upstairs with me. The bathrooms are also both on the second floor so he got a true camping experience when we set up his toilet in the garage. My dad and I carry the chair (with him in it) across the sandy beach to the dock and lift it into the boat (NOT with him in it) when we go into town. Last year my dad spent several grueling days digging a zig-zag path up the hill to the camp cabin, where the cousins sleep when they are at the lake.

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Their house in Lewiston, Idaho is a little better. My dad has built ramps inside and outside of the house but to get from upstairs to downstairs (where we sleep and where Phoenix has his xbox set up), we must drive or push his chair around the outside of the house on a grassy hill. Phoenix’s dad lives across the river in Clarkston so that is always an added bonus for him when we are there.

When we visited my friend in Boise, again the bedroom where we slept was on the second floor. The bed itself was a full – so I didn’t really sleep at all with my growing boy taking up most of the space and me letting him because I was paranoid he would fall out.

In all instances, the Northwest drives me CRAZY in the summer because the sun doesn’t set until about 10 and then rises at about 5. #areyoukiddingme #shootmenow #wtf #whatdoyoumeanthereisnotadunkindonutsintown. I can’t deal without sleep.

Guess what? All worth it! What do we have without our memories?

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So here we are at the first day of 3rd grade. The summer was quite a journey.

Now I think I’ll go have a pedicure and a cocktail and hold on until April.

May 10

In the sport of motherhood, I’m no Michael Jordan.

My morning started as every morning does. I got up, got myself ready, putting my pants on one leg at a time. I let Phoenix sleep as long as I could, which gave me time to get presentable. Hair and makeup done, I woke him up slowly with a standard 8 minutes of snuggle time, undressed him and carried him next door to the bathroom, strapping him into his Rifton toileting system. I brushed his teeth and washed his face, removing all stray eye seeds and bats in the cave. I then ran some water through his hair and spiked it with gel, finishing off the GQ look with his yellow and black transition frames. After he finished on the toilet, I carried him back to bed where I asked him what he wanted to wear. It was an indecisive day for him, but not for me. I carefully chose some bright green basketball shorts and a black Puma shirt, long socks and sporty neon Reeboks. I stood him up, allowing him to check himself out in a floor length mirror and then lifted all 65 pounds of him into his power wheelchair, securing his waist belt, H-strap, foot strap and tray. Backpack – check; keys, wallet, phone, purse – check.

Traveling with the power chair was hard at first but I’ve gotten used to using the special equipment in my minivan. There is no cutting corners as far as time is concerned. I have to leave time to lower the ramp, allow it to lift him into the van and secure all of the tie downs. I can now complete the whole process in about 6 minutes and this morning the whole routine went off without a hitch. I felt like I was at the top of my game when we arrived at our twice yearly appointment with the orthopedist, one of the many specialists Phoenix has to see for his spastic quadriplegic cerebral palsy. We had arrived with 10 minutes to spare. I looked great, Phoenix looked even better and I had even had time to stop at the Dunkin Donuts drive-thru for my daily morning fix of iced coffee.

It was one of those days when I was feeling pretty good about myself. If motherhood were a sport, I’d be a pro. kind of a big dealThen, in what can only be described as a clear lesson in humility, I met the Michael Jordan of mothers.

With one hand, she pushed a little 5 year old girl (who appeared to have hemiplegic CP) in a wheelchair. With her other hand, she maneuvered a double stroller with two girls (a toddler wearing AFOs and glasses and a clean, happy newborn). An adorable, well-behaved 8 year old boy walked by her side. I learned that she was a foster mom who had two more “medically fragile” infants at home. The appointment was for the boy, who she had raised since birth. She was told he probably wouldn’t survive and if he did, he would be in a vegetative state. Refusing to buy into these predictions, she worked with him, went to countless appointments with doctors, specialists and therapists. Her selfless showering of love and time had clearly paid off. He and Phoenix quickly bonded over the video game in the waiting room. I had seen women like her on TV – but never in real life. She was truly an inspiration.

My last 8 years had probably been very similar to hers in terms of the extra demands of raising a child with cerebral palsy. But I had only raised one child – and he is biologically mine! She is raising 6 “high need” foster kids, four of whom she had legally adopted and would likely be caring for them for the rest of her life.
michael jordan of moms

See #32? Yeah, that’s me.

I left the appointment thinking about Mommy Jordan. I could probably do that, I thought. Mind you, she did have help. Her husband was home with the two infants. Also, I doubt she was able to generate any traditional income. Finally, would that be fair to Phoenix? All justifications, of course which led me to the quick decision to keep my one child and forge ahead with him as my sole focus. I also concluded that

“Comparison is the thief of joy.”

Well, actually, I can’t take credit for this extremely wise thought. Theodore Roosevelt came up with it. Makes me wonder who he was admiring/envying!

So on this day celebrating all mothers, I think the lesson here is to do the best you possibly can and don’t compare yourself to anyone else. Motherhood isn’t for sissies, after all and we’re all pros in our own right.

Aug 11

If I had cerebral palsy, would I be so fearless?

Imagine living your entire life dependent on others for your basic care. Getting out of bed, getting on the toilet, brushing your teeth, doing your hair, getting dressed, etc. For a person like myself who likes to be in control at all times, the thought of it gives me anxiety. But then I wasn’t born with cerebral palsy. For my son, this way of life is all he’s ever known. Lucky for him, he has people all around him who are ready to jump if he says the word.

Speaking of jumping…

This summer (just a few days after he went parasailing), Phoenix jumped off of a diving board at my mom and dad’s house. Repeatedly. I was watching in awe because I remember as a child how scary and high diving boards were. Then as I thought about my childhood some more, it suddenly occurred to me that I was about his age when I started waterskiing and snowskiing. Maybe I managed to pass down my adventure gene after all.

My favorite part of this video is when he says “this is for my mom.” He wanted me to watch him and be proud of him like every little kid in a pool doing handstands and dives. He also knew he had nothing to fear because his uncles were in the pool waiting to catch him and I was standing by – ready to jump if he needed me. What a beautiful way to live – in trust and love, not fear. May he always know the net is there.

Aug 05

Second Grade Crush

School starts early here in Arizona. Tomorrow is Phoenix’s first day of second grade. Today, we had a chance to meet his teacher and pick out his desk. We already know Mrs. Devanuto. She was also his kindergarten teacher and we LOVED her. Smart and kind, she has a natural way with kids and a passion for teaching. As I watched her today, she had such genuine enthusiasm when she greeted each student, telling each one how excited she was to have them in her class. Made me wish I was in second grade again!

We arrived right at 1:00. Phoenix’s special desk was included in a cluster of desks at the left side of the class. We could have probably requested a different location if that one wasn’t as perfect as it was. Mrs. Devanuto and Ms. Dana (Phoenix’s one-on-one aid) had clearly mapped out the classroom with accessibility and inclusion in mind. Phoenix grabbed his name and put it on his desk. Then we decided to hang out for a bit to wait for Samantha.

Samantha. All I have to do is say her name and Phoenix lights up and shyly bows his head. He’s had a crush on her since kindergarten and their mutual affection for each other is no secret. Last year they were in different classes but still managed to chase each other at recess. I’ve warned him – like any protective mother would – that he needs to make sure she likes him back and if he gets the feeling that she doesn’t, he needs to move on.

“Here she comes!” whispered Ms. Dana excitedly, as Samantha approached the class with her mom and siblings. We quickly vacated the seats next to Phoenix to make sure she wouldn’t think they were taken. Samantha casually said “Hi Phoenix” and grabbed her name, walking around the room (in sassy pink cowboy boots) checking out the available desks. It didn’t take her long – she decided on a desk in the cluster just to the right of where Phoenix was sitting. An interesting and subtle choice. Well played, Samantha. Me, Mrs. Devanuto and Dana all shot each other knowing glances. Meanwhile, Samantha’s mom made a comment about Phoenix and Samantha being destined to be in the same class. A good sign – tells me Phoenix is a topic in their household, despite Samantha’s nonchalance.

At this point, a few more children came in with their parents. Samantha’s mom completed the contact form she had been given. I continued to watch Samantha out of the corner of my eye. Looking back, I wish I would have been shooting video with my phone! Just as her family was leaving, Samantha rushed over, grabbed her name from the desk she had chosen and placed it on the desk right next to Phoenix. And then she walked out. Phoenix started to laugh, overwhelmed with joy.

Okay, yes, I admittedly have legitimate concerns that this crush may be a bit of a distraction. But at the same time, school isn’t just about learning. The social aspect is clearly just as important. What a blessing mainstreaming has been. Thank you Tavan Elementary. Thank you Scottsdale School District. Thank you Samantha. Its gonna be a good year.

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