Why is it....?

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!

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.

Just an FYI...we are considering two schools at this point.  One is outside of Sandpoint Idaho and the other is 1.5 hours west of Detroit, MI (near Kalamazoo!).  They both have their advantages...so pray for me to make the right decision as I go visit these schools--Idaho on May 22-23^rd and Michigan June 3-4^th.  We hope to transition her to one of these schools by early June. 

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.