If I could have one last breakfast before I died, this would be it. It is just one of those things that you know is going to make your pants come out of the dryer smaller, but even if you have to lay down on your bed to zip the zipper, this is SO worth it!
Challah is the bread of choice cause it is kind of soft and doughy. We’ve tried others, and crust removed, they are okay but this is the best! [click to continue…]
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Cathy Baggett, Program Services Coordinator for the Tennessee Hemophilia & Bleeding Disorders Foundation, warned me: “You may find it a little overwhelming at first…” and she was right!
Steve, our daughter Kelly, and I were privileged to attend the 2008 National Hemophilia Foundation Annual Meeting in Denver, Colorado. Steve and our two daughters all have Type 2 B Von Willebrand’s Disease. (Our older daughter, Kelly, is an ER nurse at Duke Hospital and was thrilled to go to the conference and did the nurses' track. Our other daughter, bless her heart, said we couldn’t pay her to go… as you may know, you can have two kids with the same bleeding disorder and they’ll react totally different!!!)
I’ve been racking my brain trying to figure out how to describe going to the conference when I heard something that helped me gain perspective.
Then on New Year’s Eve, I met a young man who had a newborn son diagnosed with Downs Syndrome. He told me about a piece he had read by Emily Perl Kingsley that helped him to deal with some of the emotions he was feeling.
I easily found the article on the Internet and thought it was so inspiring. Here’s the piece I found…
WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip—to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
But… if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.
This analogy so touched my heart. I remember being in the delivery room with Kelly (27 years ago!) and hearing the news that she was having bleeding issues and I knew exactly why, since her dad had VWD. That day I entered a new world of mothering children with a bleeding disorder… and I too, had to learn a different language spoken in the bleeding disorders universe.
I will never know what it is like to have a child who doesn’t have a bleeding disorder, and obviously, I wouldn’t trade my girls for anything in the world. But for me, going to the national conference was like going to a place where suddenly, everyone spoke the same language as me! It was such a great feeling and one I had longed for when my girls were little.
It was particularly profound for me because I was late getting to the conference because my younger daughter had had a bleed the day I was supposed to leave to go to Denver. She'd had pretty major surgery and overall, with factor, did amazingly well, but still, we had an unexpected bleed and I went to the conference pretty drained.
So I was comforted and encouraged by seeing and talking with so many women: patients (I’m not sure if there’s a better word!), moms, and doctors alike.
I attended mostly women’s sessions and it was gratifying to see how far things have come for women with bleeding issues, whether they are carriers or women with bleeding disorders themselves.
The person who was a bit out of place was my husband, who, as a male, has VWD, which these days seems mostly focused on women's issues. But he, too, was so grateful for the information we were getting for our daughters and their needs, both present and future.
If you’ve ever traveled to a foreign country where they speak a different language and run into someone who speaks English, you know there is an instant camaraderie. Even if they are from England or Australia, you are able connect in a way that is comforting because you can communicate with someone who understands exactly what you are saying.
And although the research and lobbying efforts reported by the National Hemophilia Foundation were good to hear and understand, the real comfort was to look out and see thousands of people who were able to communicate with each other and support each other just by being together and speaking the same language.
So whether it is at a national conference or a local event, being with folks who understand my world and can communicate with each other is an incredible gift. It is a gift I was grateful to receive and one that I want to happily give to others.
(For more info about Von Willebrand's desease go to All About Bleeding.)
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Every now and then things start churning in my head and my heart and I can't seem to get a handle on all that is swelling around.
Just in the past couple of days, I have heard reports of many really hard things that are happening to those around me. One friend's son-in-law just got laid off of work… and many people who I don't even know are losing their jobs; I just heard of another group this morning. And it's three weeks before Christmas.
A young high school girl got very sick and died last week from unknown causes. A friend's grandson just died after being borth prematurely and with a birth defect. He only lived a week.
I just now got an email from a friend whose little 6 yr old nephew stopped breathing and is on life support. He has downs syndrome and they don't know what is causing his little body to shut down.
My heart is heavy.
And then I have to ask myself: Is this a surprise to God? Does He really have the "the whole wide world in His hands"?
My oldest daughter is leaving on a medical mission trip to India a month from today. Her grandmothers are not happy about it. They think we're crazy to let her go (she is 27, lives on her own and it's not like we can take the car keys away from her).
Kel and I talked about some of the risks involved this morning. She said, "I believe in a Sovereign God. If He calls me home while sharing the gospel through delivering medical care in India, then that's my time and I'm okay with it. I could just as easily get hit by a truck here. I believe God knows the number of our days. When it's my time, then it's my time."
Last night I heard a performance of Behold the Lamb of God by Andrew Peterson. I was moved by the song, Labour of Love. I have listened to the song a couple of times now and it has touched my heart in a way that helps my head.
The answer to my question, "Is God really in control of all things?" is answered in the lyrics of this moving song.
Out of pain comes hope… in the One who is Hope.
Labour Of Love :
It was not a silent night
There was blood on the ground
You could hear a woman cry
In the alleyways that night
On the streets of David's town
And the stable was not clean
And the cobblestones were cold
And little Mary full of grace
With the tears upon her face
Had no mother's hand to hold
It was a labor of pain
It was a cold sky above
But for the girl on the ground in the dark
With every beat of her beautiful heart
It was a labor of love
Noble Joseph at her side
Callused hands and weary eyes
There were no midwives to be found
In the streets of David's town
In the middle of the night
So he held her and he prayed
Shafts of moonlight on his face
But the baby in her womb
He was the maker of the moon
He was the Author of the faith
That could make the mountains move
It was a labor of pain
It was a cold sky above
But for the girl on the ground in the dark
With every beat of her beautiful heart
It was a labor of love
For little Mary full of grace
With the tears upon her face
It was a labor of love
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My friends at Thomas Nelson have launched a new book, The Truth About You: Your Secret to Success by Marcus Buckingham. This little "book" took me by surprise.
I have to admit I was fairly skeptical when I first opened the package, as I wasn’t sure quite what I was getting into since the package included a book, a DVD, and a small spiral notepad. I had only expected to get a book, so I was intrigued and decided to watch the DVD and give it a shot. The quality of the DVD was quite good and was appealingly short (for a very tired mom). Marcus Buckingham turned out to be quite charming and his concepts easy to follow. I then read the book in one sitting (again, appealingly short) and very much liked the workbook format. (And although I didn’t actually write down my thoughts, I appreciated that there was a place to put them, nonetheless.)
As I said, I was surprised. Buckingham’s ideas were quite simple… but profound at the same time since they were new ideas to me.
HIs main idea of focusing on increasing my strengths (as he defines: what makes me strong and energizes me, not necessarily what I’m “good” at) and not obsessing over my weaknesses is a message I wish I had heard many years ago. I wanted to immediately give it to my daughter who is so gifted but like myself, is often more focused on her “weak areas” rather than celebrating those gifts that make her unique, special, and valuable.
(My one reservation is that it often feels very “corporate” and talks about your “job” and your “managers”. Of course, corporate may be his primary market, but for solo entrepreneurs, students, and stay-at-home moms, the message is still valid and I only wish had been tweaked to sound a bit more broad based.)
All in all, I would very much recommend that you get a copy of The Truth About You, especially for those who are young enough (or old enough!) to realize it really is more about who you are, than who you aren’t.
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There is a time for tears… and a time for laughter. As frustrating as things have been with my mom lately, it was such a joy to see her happy at her birthday party. No kidding, she had about 165 people there! (She said you can always count on a good turn out at a retirement community when there is free food, wine and ice cream!). But seriously, she has lived at Greenspring Village for ten years now, since the property opened, and she has many dear friends. She requested “no gifts” since she said she was trying to get rid of stuff not get more stuff, but she got many lovely cards from friends which she so enjoyed.
I had decided before I went that this weekend that it wasn’t going to be about her driving issues and I stuck with that until just before I left for the airport. She had gotten the results from her driving assessment back and she finally did show them to me. She failed three out of five areas so she is going to talk to her primary care physician since her doctor would automatically be getting the results. Maybe that will help. (I’m not counting on it, but it is one more layer of support.)
My brother was taking me to the airport and since we were both there, we simple asked her what she was going to do about her driving. She said, “Well, I’ve decided I’m not going to drive any more…, …., … well, except just to church and maybe to the store or only when it’s necessary.” UGH!
She’s been upset because she thought she should sell her car. I suggested that she think about not selling her car but hiring someone to drive her a day or two a week using her car.
She said she’d think about that. It’s a start.
In the meantime, I’m so grateful for my mom. She has been such a rock all her life and she cared for my dad for 22 years after he had a stroke. It is hard for both of us to view each other differently now that things have changed.
But for this one afternoon, she was the center of attention and we celebrated her long life. What an incredible blessing.
Oh yeah,one other thing. Sunday night, Steph and I went to dinner with her at Greenspring. Mom’s hearing with hearing aids isn’t great but sometimes I forget. We picked up our menus and the soup of the day was “Chili”. I said to her, “I think I’ll order the Chili. That sounds good.” She looked over and said, “I agree. That’s why I brought a sweater!” When we broke up laughing, we told mom what we were laughing about and she started to laugh, too. I’m really grateful she still has a sense of humor!!!
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The flowers for sale at Pike’s Market are just extraordinary. We got to the Market late on Saturday afternoon and we were catching a plane back home at 7 a.m. the next morning so I couldn’t justify buying any… but hopefully, a beautiful iphoto bouquet will help me remember. After the market, Steve and I had dinner at Steelhead Diner, just up the block. Ken Davis is the chef/owner and if you’re ever in Seattle, it is definitely worth the trip! We had “caviar pie” — a wedge of cream cheese with 5 kinds of caviar on top — that was just outstanding. I really love Seattle.
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This is too funny (not ha-ha funny, but I'm shaking-my-head-in-amazement funny) because I can't believe I was so naive.
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Well, my mom is finally speaking to me again. But she is still driving whenever she wants and it makes me crazy, mostly because I am really worried and she isn't interested modifying her lifestyle (and she has plenty of good options available). She listens… and then totally ignores what my brother and I have said.
She's still not happy with me. This is an awkward position to be in because I don't want my mom to be unhappy (and I don't want her to be upset with me). But I do want her to be safe… as well as the rest of the world .
Obviously, I know it is about her sense of independence but at what point does that become secondary to her safety and the safety of others?
So here's an interesting twist.
I spoke with one of the support staff at Greenspring Village the wonderful retirement community where mom lives outside of DC. Cindy (who knows my mom well) told me Greenspring has just gotten a cutting edge new program call "Viva" where seniors can get a total overall evaluation to see how "at risk" they are in various situations, including their risk when driving. It was described to me that it works in a similar way to how a pilot uses a flight simulator to determine their responses to various situations when flying. This evaluation functions in the same way for driving. Here's how they describe the driving component of the Viva evaluation (the other components of the evaluation check things like how at risk a senior might be for falling when in an independent living situation).
Vision and Driver’s
Health Inventory Assessments
"We [have} introduced three new assessments to Viva. The first is a vision test that would be
similar an eye exam at the doctor’s. This is a screening to see if someone
should go to the eye doctor. We test visual acuity by asking the resident to
name the letters they see on the computer screen as they get smaller. We test
sensitivity to contrast by asking the resident to name letters as they get
lighter and darker. And we test visual field by having the resident focus on
the center of computer screen as dots appear in the peripheral field of view.
These tests can help see if one might need an eyeglasses prescription updated
and it can help see areas that may be blind spots that the eye doctor should
take a second look at."
""The second assessment is called Useful Field of View- this
assesses processing speed, divided and selective attention as the individual
identify objects on the computer. Poor results on the UFOV can indicate that an
individual is at risk for poor driving."
"The third new assessment is called
Driver’s Health Inventory and it incorporates vision and reaction time as well
as working memory as well as physical capability to help determine an
individual’s risk when driving. It can identify deficits and functional
abilities that have been established as having an effect on driving ability. "
This is only a three hour evaluation and only costs around $50. I told mom about the program and Cindy at Greenspring also talked to my mom about it and she was open to the idea. At this point, I believe, the issue is getting some objective data — data that will help determine what course of action needs to be taken, if any. That way, it isn't about me or my brother "pulling the rug out from under her" and it will give us something to focus on beside a battle of the wills (and since the apple doesn't fall far from the tree, we could easily both dig in our heals and only a crisis would bring resolution).
So far, mom has agreed to participate, mostly to prove me wrong. I sincerely hope she does.
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I can't believe it. This afternoon, I actually screamed at my mother while I was on the phone with her. I'm not a screamer. I haven't screamed at my mother since I was a teenager. I know it isn't effective communication. So what would provoke such behavior on my part? Driving her car.
Then this morning she told she had just "run a few errands and there really wasn't anyone else on the road" (not too believable in Northern VA). She said she had done just fine.
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After two weeks on a "normal" low-cal diet (I didn't lose hardly any wieght), I have graduated to Phase 2 and I am officially weirded out. On my new 30 day diet (like the old joke, "So far on my 30 day diet I've lost 5 days"), the first two days you "gorge" as a part of a strategy for resetting your hypothalamus. The bad news is that the next 28 days I only get 500 calories (under doctor supervision) which is sort of like… well, eating nothing.
But did you hear that? For the next two days I can eat anything I want, as much as I want, all the time… with absolutely NO guilt. Under doctor's orders, no less.
How am I doing with this emotionally? Actually, it really is weird. I had dinner with my daughter (dessert was a hot skillet chocolate chip cookie with ice cream at Bricktops in Nashville) and she said, "Mom. It was so nice not to hear you obsess over food and just enjoy it." Hmm.
Part of my issue with food is that "balance" has never been a favorite word in my vocabulary. I know the next 28 days are going to be hard when I am on the "if it even looks good, don't eat it" part of the diet. But somehow, these two days of intentional eating are making me realize there really is a difference between intentional and unintentional eating. It's just I've always come at it from the other direction.
Sometimes, it's a matter of changing your perspective to see things slightly different.
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