Today, Friday, my sweet German boy's family is in town. I am hostessing them. In Scottsdale. My city. My state. My country. Plans changed like the wind all day. We were supposed to go out to dinner as two families...but that did not happen. We ended up in Scottsdale OLD town at 5 with a very hungry crowd (after they spent the afternoon getting their RV). We sat down to eat at Culinary Dropout and they all ordered huge meals. Nothing I could do to stop them. I ordered something light....so we could continue with our plan of going to CPK with my kids and Bill. At 7pm I called home and asked Bill to fix pizza for the kids...because we had changed plans. NO CPK tonight. Whah whah. Lexi was disappointed, but she was good and took it well (according to her texting me!). They had Pizza, we walked around Fashion Square and then arrived home at 8:30 just in time to meet the AYA rep Sherry. She had to do an exit interview with Michi. When I arrived home.....the dishes from Bill's dinner with the kids were piled next to the sink...as if....it. is. my. job. to. clean. up! Sheesh! SO, simple question: Why is it that I make dinner so MANY nights, almost every night....and still have to clean up after myself? Just asking...... WOW. It really hurts!
Saturday, May 26, 2012
Monday, May 14, 2012
Mother's Day
What is Mother’s
day all about? Growing up we celebrated
my mother all day, pampered her, did the dishes so she wouldn’t have to, made
dinner or went out to dinner so she didn’t have to cook....we showered her with
gifts. This included my father. My father was taught as a boy to respect
mothers. His mother was an amazing woman
and my father knew that in spades. SO,
when he married my mom and started having kids, he knew that she was the one
tirelessly and thanklessly raising his kids to be amazing people. He respected my mom with undying love and
when Mother’s Day rolled around...he made sure he celebrated her. He ALWAYS got her a present of some sort....a
card...some flowers....and made sure his kids helped out...afterall, my mom was
the mother of his children! This is NOT
the case with my husband. He doesn’t get
me a thing from himself. Yes, he makes
sure the kids pick out something to give me...but he gives me nothing to show
me how much he respects me as the mother of his children. He says (excuse) that I am not his
mother....but he truly misses the point!
I don’t need much.....even a card would be nice. A small token of appreciation (an added charm
to my charm bracelet would be so simple, not expensive, but such a heartwarming
gift to me)...to show ME how much he appreciates my tireless and thankless
energy....raising his kids. Last night
we went out to dinner with his mother (who was so alert last night...it made me
so happy!) and the kids. We went to our
favorite family restaurant, California Pizza Kitchen. It was great.
We went early (which was not my first choice)...but it was nice to get
home by 7 and have a couple of hours in a quiet house before putting the kids
to bed. Bill was asleep on the couch by
8. I was stuck cleaning up the dishes
from breakfast, making lunches, getting breakfast ready for the morning, laying
out medicines, etc. THEN, I was left to
put the kids to bed without support from my husband. ON MOTHER’S DAY! Our kids are to the point when putting them
to bed is not tough....but, Nicolas does still need help brushing his teeth,
making sure he goes to the bathroom, and taking his meds. Sure would have been nice to relax on
mother’s day...and don’t cha know on Father’s day Bill will expect it! While I was putting Nicolas to bed, Bill
arose from the couch and I assumed (incorrectly) that he went upstairs to put
Lexi to bed.....well...that was a bad assumption. Because when I went into my room at 11:30 to
go to bed, Lexi was still up in our bed....watching TV!!!!!!!!!!!!! WOW! Getting
Lexi up this morning was such a treat.....she struggled getting out of
bed!!! I was so upset....and it ended my
day with such disappointment. I really
find it difficult to kill ‘em with kindness....and be nice to Bill these
days. I wish I had more grace and
patience....I wish I could shower him with love so he could MAYBE find it in
his heart to respect me and enjoy life with me.
I know it is partly my problem...because I struggle wanting to talk to
him and treat him nicely. I am so short
with him...I am so frustrated with him....and I know that he is frustrated with
me because it is so difficult for me to be nice to him. It is a two-way street for sure, but 2 wrongs
DON’T make a right....and somebody has to rise to the occasion and apparently
it will NOT be Bill!
Sad MOM..
It's NEVER easy....
It’s never easy! SO, let go of those pre-conceived notions. So many of us with special needs kids
struggle with everyday challenges....school IEPs, how to involve our children
in everyday activities...neighborhood friends, birthday parties (really? In Nicolas’ 14 years he has NEVER been
invited to ONE! And Maggie does better one on one-- gee how conducive is that
to a PARTY?), what it will look like when you go to a friend’s house for a BBQ
or just go to the zoo or the children’s museum.
It is never predictable. It is
ALWAYS NEW. This is something families/friends
with “typical” kids will NEVER understand.
And, what is even more difficult is most of our friends will never be
able to sympathize with or grasp the concept of how difficult it is to just go
to the grocery store let alone try to enjoy a family outing to the zoo or a
water park with our children. The
park? Oh, yeah, that sounds like fun,
NOT necessarily with a special needs kid!
The vigilance, the watch, the fear that our child will, either; wander
off, freak out another child, or hit someone is constant. SO...what we special
needs parents need to do, is adapt and find that new “normal”. Not expect anything. Not want for anything you dreamed of. AND, most of all....not compare yourself to
anyone! This is NOT easy...believe
me. I have been doing this for 14 years
now...and I have to say...it’s easiER....but not EASY. When a friend has a
child diagnosed with cancer, nowadays more often than not, a curable
disease....it is almost enviable (shock factor!). What my children have is NOT curable. What we deal with is NOT curable. The blood draws, the fear, the
hospitalizations, the wilderness programs....they don’t cure....they just help
us figure out what to do next. Maggie is
brilliant but not capable of having normal relationships or understanding how
she impacts others. She is several years
behind figuring out how to engage in social activities. She has a LOT of catch up to do. It is very painful to look around and see
other girls her age who are poised, well coifed, and dating or going to a
prom. It is really difficult to keep
from wishing and wanting what my friends have with their beautiful
girls...graduating with honors and going off to the college of their
dreams. Maggie is doing well in this
Wilderness program....but needs so much more than what this program can do for
her. She needs the consistency of
trained professionals catching her in teachable moments and working with her to
improve her reactions. She needs
frequent interaction with peers to understand how she impacts others and to
understand how to effectively react to other’s suggestions and criticisms. Bottom line, she needs tools in her toolbox
in order to be a successful adult living in our complex social world. So here we are...in the next phase of her
life....wishing there were a way out of this decision but knowing that it is
the best possible chance for her to learn skills to be a more effective social
being in this very complex world we live in....we have had to let go of our vision of what we wanted
Maggie’s year to look like. We need to find
joy in simple pleasures...to look at the pictures of her and be happy for what
she is experiencing. We are happy that
Maggie is away from the complicated social pressures of FB, Twitter, and
Instagram. We are learning to allow
others to teach her what we desperately want her to learn. We are living each day thanking God that we
have resources and friends who lift us up and support us during this very
stressful time. We are working on not getting
hung up on the fact that we should be able to handle this on our own. We are breathing a lot and trying really hard
to work it out in our minds that it is best for all of us to let Maggie go on
this journey without us. Letting her go
is a GIFT to her (and to us)....but not one without regret or sadness. I have always tried, as a mother of special
needs kids, to find that balance of when to include the special needs child (as
a benefit to you and the child) and when it is not a benefit. Bringing them along, is not always the right
thing to do. We have reached that point
with Maggie.....she was not making progress in our home. Bringing her along was not working for her or
us. SO, now....as we move forward to the
next phase...we have to accept the new normal.
BUT, the new normal is not always easy to accept!
Thank you all for the
letters to our baby girl. The letters
are lifting her up and helping her!
BELIEVE me. We leave this
Wednesday evening to fly to Salt Lake so we can spend Thursday from 8:30-5 and
Friday from 8:30 to 5 with her. I can’t
begin to describe the excitement I feel in my heart to see my beautiful
Maggie. Again...if you have something
for me to give to her....let me know.
Monday, May 7, 2012
I wish I had written this!
Welcome to Holland
By Emily Perl Kingsley
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.
Wednesday, April 25, 2012
Husbands...well at least mine
Another story about bad spousal relationships. I really think I am in a very dysfunctional marriage....with NO way out that is a good option. The lesser of two evils is to stay with him and continue to hear his verbal abuse. I am stronger than he is because I refuse to stoop to his level...most of the time. This morning (like every morning) Bill woke up and started yelling for everyone to wake up. I woke up....I went to the kitchen....I started putting my coffee on....and Bill is sitting at MY computer (AGAIN!) in the kitchen. Most mornings I keep my mouth shut but this morning, I just couldn't. SO, I said "you just want me to wake up so you don't have to do any work". Because while I am working to get the kids breakfast (which Bill is perfectly capable of doing), packing their lunches, giving them their meds, etc. He sits at MY computer on FaceBook eating his GD breakfast. Well- As usual, Bill can't handle the truth and jumps up from his chair and towers over me with his shoulders back (imagine a bully on the playground- that's the visual) and says "I have to eat my breakfast, take a shower, and then take Michael". By the way, I had turned away from him so I didn't have to see his bullying stance (It gets really old, you know). I am sure that did not go over well in his mind. I asked him why he had to be at my computer and not the other computer that I had put there for him. He went back to the computer, unplugged the one I set up for him and said "well, I can take care of that!". Sat down at MY computer again and continued eating his breakfast while on FaceBook. REALLY? How old are you?
He finished breakfast walks over to me, puts his hand on my shoulder (while I was cooking Lexi's eggs) and said "I know you don't think your comments hurt, but they do". He walked off to take a shower. Minutes go by and the phone rings. It was Tanya asking if Michael is ready to go. I had not even seen Michael yet. He is usually sitting at the breakfast table at 7 eating his cereal. Not this morning. I called up and asked if he was ready and he said he wasn't and that they just texted him to ask if he wanted a ride. I told Tanya he wasn't ready- she said she would have to leave then. A couple of minutes later Bill walks in asking who was that? I told him that it was Tanya (I should have lied!!!). Yesterday Bill was really angry because I didn't tell him that Tanya was taking Michael (which I had NO clue about! yet Bill seems to think I keep it secret from him to annoy him!). He went on and on about how I should tell him these things so he didn't have to rush around getting ready. He would be able to enjoy his breakfast, etc. SO, today....after I told him that Michael didn't go with Tanya because he wasn't ready....Bill said "So, you are going to take him then?". I said no "you need to". OH MAN....to make a long BILL RANT short- he said he would rather go in Lexi's direction (opposite direction from work-- yeah, that makes sense!). He went on and on about how communication is important and it would be nice to be told when Michi is getting a ride....yada yada yada. I am so bored with that speech....he is such a blame game guy! He then says "Just to make myself clear" (after he ranted for 5 min--I think I got it!) and I said "I got it". Bill's reply: "That's what Maggie does!". So I said "Ok, let me tell you what I heard"...at which point I summarized his rant. Got it. Check! Off with Michi he went....poor Michi. What an ASS Bill is!
Letter to Children's bells parents
I am going to be a bit bold here (to some
of you that comes as no surprise). First of all, I would like to put a
disclaimer on this email and that is to say that none of my opinions have been
endorsed by the church or discussed with anyone at church. Also, it is
meant as food for thought and not an attack on any one particular person.
I have been thinking about this over the last couple of days and just
have to express my feelings. So, here goes... on Sunday the kids played
bells with several missing kids. Some of those kids had been excused with
very good reasons and some just decided to do something else, stay home, or
whatever. As you know, I play bells in the adult choir. I can tell
you, it is exceedingly difficult to play a piece with ONE person missing, let
alone several. I was very disappointed to see the amount of kids who were
missing this past Sunday. And the quality of the piece reflected the lack
of children-- who had practiced the music in advance. My children are
expected to be an integral part of the church being servants of God and to the
incredible community we have at Mountain View. My girls have been
expected to play bells and sing in the children's choir. They are
expected to use their talents and gifts or learn other gifts to share with the
congregation to enrich the life of our church. There have been times (and
this past Sunday was one of them) that my children have begged me to let them
miss a practice or not go play bells or sing in church. Lexi was sick on
Sunday morning, when she came to me that morning before church, she was pale,
her glands were swollen, and she just looked like death warmed over. I
loaded her up with Tylenol and Advil and said "Lexi it is your duty to
serve your church and it is your responsibility to play along with your friends
in the bell choir. I am sorry, but you will have to be there or you will
disappoint Danya, your fellow bell ringers, and the church community. It
is one thing if you are part of a singing choir, but bells is another
story". She went, she played her bells and when there were missing
practiced bell ringers, it messed her up. She was disappointed but now
understands how important it is for her to be there every time. I am NOT
meaning to toot my own horn here. James Levie was also one who was not
feeling well, yet he was there. My point of bringing this up is not
really about last Sunday. It is about my disappointment in society and
parents today in general. The quote Steve had up on the screen Sunday
morning is fitting for my preaching here (sorry...I am preaching and I am
preaching to the choir for some). "Never doubt that a small group of
thoughtful, committed citizens can change the world. Indeed, it is the
only thing that ever has." ~ Margaret Mead ~ As parents, our role is
to teach our children responsibility. To teach them how to stick to
commitments and how to prioritize (among other important qualities). As
Christian parents, our moral obligation is to teach our children about
faithfully serving God in ways that will please Him and our church community.
Distractions that our children have these days makes it VERY difficult to
be a parent...NO doubt. Distractions make it tough for us to see the
forest for the trees and to prioritize. But next time you question
whether or not your child should or shouldn't stick to a commitment, ask
yourself "What would Jesus do?" It's pretty simple, really.
One last thing....I hope this email
motivates you to be more a part of our wonderful church community and to teach
your children to be thoughtful and committed citizens of our beautiful church
and in our society. I sincerely hope this email does not encourage you to
have your child quit the bell choir. Again, it is not meant to make
anyone feel badly about themselves. We NEED your children (in fact, we
need MORE children to commit to bells). We LOVE your children. The
Church WANTS your children to be up there playing their bells and serving God.
YOUR children bring smiles to every single person in that congregation
when they play bells, sing in the choir, or perform in any youth activity.
The children keep our church alive with excitement! If you have a
problem with my email, PLEASE come speak with ME.
Maggie's Community- A beautiful thing
Maggie update 4/24/12
It has been 5 weeks since we have seen or
talked to Maggie. Today we were able to
speak with her. Oh MY GOSH--It was so
nice to hear her voice. She sounds
great. She was a bit verklempt at first. It was so sweet. (I was surprised that I didn’t follow
suit!) However, she has a great
attitude, she is learning new skills, working on her deficiencies and learning
about her strengths. I am so proud of
her. She has been on my mind for all
these weeks but after talking to her today I was thinking about what could
possibly be the reason she seems to be doing so well. Frankly, I thought she would be struggling so
much more. Yes, she has her
moments. She says she gets very
homesick. She says she struggles with
group dynamics and getting along with the girls. She struggles with the obstacles such as
hiking with a 50 lb pack on her back in 90-degree heat and enduring a long day
of hiking to get to their destination.
But what keeps her going? What
motivates her to persevere? What keeps
her smiling?
Parenting is tough. Parenting comes with all kinds of
distractions, especially these days.
Kids have SO many choices. Kids
have SO much more at their fingertips than I did when I was young. Life was so much simpler then (yes, I am
OLD!). There’s FaceBook, iPods, iPads,
computers, cell phones, texting, choices in afterschool activities (way more
than I had), and SO MANY choices—PERIOD (just look at the shampoo aisle at the
grocery store!). How can you be an
effective parent these days with all these distractions and choices? I believe parenting is a very serious
occupation. It is met with all kinds of
trials, whether you have a typical kid or a child with challenges. It is a parent’s obligation to teach
accountability, prioritization, commitment, responsibility, thoughtfulness,
kindness, morality, respect, work ethic, independence, self-reliance, community
awareness, and good citizenship. That’s
a LOT! So, what is the secret to making
all of that happen? I truly believe it
takes a village to raise a child. I
believe it is being part of a strong community. In our case, it’s being a BIG part of our
church. Over the past few weeks, Maggie
has been almost overwhelmed with letters (mostly from our church but also from
other caring friends and family). She
has had people writing her some of whom she doesn’t know. The church has been supporting her
emotionally and prayerfully. Her church
family has held her up high. AND, it is
making a difference. She said she has
received so many letters and it makes her feel good. It makes her feel loved. It makes her want to work hard. It helps her overall attitude. For that I am eternally grateful!
I have worked hard as a parent to teach my
children all these parental responsibilities.
I am a firm believer that being a good citizen is the basis for being a
good person. My
children are expected to be an integral part of our church and the community. My children are expected to be servants of
God and to the incredible community we have at Mountain View Presbyterian
Church (even Nicolas). My girls have been expected to play bells and sing
in the children's choir. They are expected to use their talents and gifts
or learn other gifts to share with the congregation to enrich the life of our
church. There have been times (and this past Sunday was one of them) that
my children have begged me to let them miss a practice or not go play bells or
sing in church. Lexi was sick on Sunday morning. When she came to me that morning before
church, she was pale, her glands were swollen, and she just looked like death
warmed over. I loaded her up with Tylenol and Advil and said, "Lexi
it is your duty to serve your church and it is your responsibility to play
along with your friends in the bell choir. I am sorry, but you will have
to be there or you will disappoint Danya, your fellow bell ringers, and the
church community. It is one thing if you are part of a singing choir, but
bells is another story". She went, she played her bells and when
there were missing practiced bell ringers, it messed her up. She was
disappointed but now understands how important it is for her to be there every
time. I am NOT meaning to toot my own horn here. But, it does
illustrate the issues parents have today.
Distractions. One child in the
bell choir was allowed to go to a baseball game instead of playing his much
needed bells. REALLY? I truly don’t understand how a parent could
make that call. Playing bells is more
than a team sport. It is the ultimate in
group dynamics. Without even ONE bell
the melody is lost and other bell ringers make mistakes because they rely on
the note before them to find their note and timing.
To bring
this back to the point of Maggie.....it makes me realize that the decision we
made to send her on this journey was a pretty darn good one. We were not making headway with her at
home. We needed more for her and from
her. She needs more than us. She needs a community of people who can give
her more than what we are able to give.
She needs to learn that without her efforts her team/group/family/church
or whatever the case may be is weakened.
She needs to understand how important her efforts are to make her
community better. She needs to learn how
to be part of a community without distractions.
Maggie is learning that she is part of a team and an integral part of
that team. She is learning that her
community (her church family mostly) is important. I really feel that the cards and letters from
home are making a difference in her attitude.
I truly think she feels the support and she is motivated to excel and do
her best because her team, her friends, her community is strong. I am forever indebted to all of you who are
supporting Maggie throughout this journey.
The quote of the week is:
"Never doubt that a small group of thoughtful, committed citizens
can change the world. Indeed, it is the only thing that ever has." ~
Margaret Mead ~
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