Love is not just Marshmallows

2 Dec

Today my five year old told me about her friend at school.  And her friend’s sister.  Her friend’s sister talks with her, plays Barbie Dolls with her, they practice writing letters and words.

And in her tone was a very sad girl bursting with confusion in a pink tutu skirt.  Because her older sister does none of that.  At that moment her sister, who has Down Syndrome and some autistic behaviors, was sitting in front of the fireplace rolling small plastic hoops onto the stone of the fireplace and giggling.  It’s her favorite game even though we remind her endlessly not to sit by the fireplace.  “It’s hot” we say and sign.  She bellers a “no” and continues.  She’s incredibly stubborn, but that’s the beauty we have grown to love about her.

“I hate my sister.  I wish I had a sister like A’s.” And my heart cracked.  This wasn’t a typical outburst, it wasn’t a tantrum.  This was a five year old who has realized her sister is not “normal.”

I paused with tears in my eyes, trying not to sob for the big sister playing with her rings as if this conversation wasn’t happening.  “Well, I love her” I said, “I love her for who she is, just like I love you for who you are.”

Because a five year old is on a mission to win every argument they start, she continued.  “But she won’t listen.  She won’t play with me.  When I try to talk to her she ignores me.”

And I cannot deny all of these discoveries are true.  Her sister usually prefers to play solo, to swing on the swingset or watch her Kindle, read books, play house.  But she often plays alone.  I have the hunch it’s because she’s hit her wall of interaction after school and the littlest is an extrovert who always wants to be noticed.

I remind my daughter of the many good qualities that we have with her sister.  She laughs often, always wants to dance, is great at peek a boo, and they can teeter totter together as they are nearly the same size with four years between them.  “I love her for being her.  I love you for being you.  Even when we are angry, we still love.”

She may have wanted to keep fighting that fight, but I couldn’t.  I was reminded of the grief process and how I was sad and angry the day we discovered our daughter had Down Syndrome.  Until that became less and less a priority and I just learned to love her as her.  

In time I think she will realize how lucky she is to have her sister and brother.  She will realize her sister is full of unconditional love.  I certainly see it every day.

As I wrote this I managed to leave the two of them in a different floor in our house than I was in.  I came back down to the entire pan of Rice Crispy bars on the living room floor and two girls gnawing at each side.

Apparently we love our sister anyways.  At least enough to share the marshmallowy goodness of the treat Mom said not to eat more of until after dinner.

I am Loved

17 Nov

A friend asked today what forgiveness means.

After all, how many times have you heard it?  “Forgive me, but I forgot to turn the lights off.” or “Forgive me for stepping in your way.”

Yet rarely will you hear the honest apology to what hurts you the most.  So how do you forgive?  And what really is forgiveness?

There is a song by country music artist LeAnn Times “What I Cannot Change” that supports my theory in forgiveness.  Forgiveness is fluid.  Forgiveness doesn’t mean you forget.  Forgiveness is part of love.  She sings “I will learn to let go what I cannot change and I will change whatever I can.”

The past stick us in a crack in the sidewalk unable to move on.  I can’t change what I’ve done.  I certainly cannot change what others have done.  But I can change myself.

I recently painted some wall decor for my girls.  Simply put they say “You are Brave.  You are Kind. You are Loved. You are Blessed.”  I am quick in pointing out the beauty in others.  I can list off a million and one characteristics of others I admire.  When I get to myself.  I stop.  I freeze and try to think of the good in me.  And it is really hard to pull that out some days.  But I don’t want that to happen to my children.  I want them to know how loved they are.  How wonderful and perfect they are even when they make mistakes.  I want them to feel that hug around them.  After all, they give that to me.

Thanks to the love of my family, my friends, even my blog readers.  Your replies on my blog mean the world to me.  I feel my heart tug each time something I write touches you or helps you.  Thanks to all of you I can see the good in myself as well.  I can see that I am able, beautiful, creative, dream-filled, engaging, feisty, grateful, happy, intelligent, joyful, kind, loving, mindful, nostalgic, open, persistant, quick, real, sassy, touched, unpredictable, vulnerable, weathered, (e)xtraordinary, yellowed, zany.

We cannot change others.  I do not think we can forget, but we can change ourselves.  It’s okay to distance yourself from pain.  It’s okay to feel the hurt, the anger, the love, the jealousy, all of that is okay.  To live is to feel.  But we need to build our own strength.

Surround yourself with people that love you.  People that build you up.  And help build up others.  It’s my job as a mother to let my children know they are loved.  That they might make mistakes.  And might be hurt by others mistakes.  But in order for them to love themselves I not only have to model that I love myself.  But believe it.  

So forgive me if I drift in and out in life, but I’m learning to love a really important person.  That’s me.  And she’s just as important as you are.

Blue Lights Are Special

14 Nov

My son is tough.  He has a kind heart, a great sense of humor and every day I watch him grow into this incredible young man.

But he has to be tough.  He has Type One Diabetes.  And all the exercise or food choices in the world will not cure him.  There is no cure for Type One or Juvenile Diabetes.

Being tough means spending most of a morning in the health room at school eating candy and drinking juice to try to raise your blood sugar over 70. 

Being tough means waking up after your insulin pump infusion set breaks off and you feel like vomiting.  Instead you replace it, inject insulin and drink water, knowing it will pass soon.  

Being tough means testing your blood sugar seven times a day.  Using your cell phone to track blood sugar data.  

Being tough means a day at the waterpark means stopping every hour at least to test and connect that insulin pump again.  

Being tough means going for a bike ride means bringing a test kit, quick sugars and water.

Being tough means listening to your mom or dad ask yet again “did you test?” or “did you bolus for all your food?”

Diabetes isn’t easy.  At all.  It requires a lot of support and knowledge.  And that’s one thing we can do to support others.

There are many reasons why we love our new community.  But what I love right now is their efforts in raising awareness and supporting others.  Waunakee has turned the town blue.

A free light bulb is given to anyone who wishes to support this cause.  And as you drive downtown you see the support.  A blue Christmas tree, blue lights wrapped around light posts, and countless houses with a blue light bulb on their front porch.

To a family that struggles with the real life challenges of diabetes it feels like a hug.  It feels like you’re not alone in this disease.  And it spreads awareness.  

Not to mention it shows how beautiful tough can be.

What Words Mean

9 Nov

Given that it’s Election Day and people are listening to many words this post seems fitting.  (And no, this is not a rant about politics.)

Remember when we were children singing nursery rhymes and songs (because there wasn’t television or electronic devices or gobs of toys around?) We played.  We sang.  And I remember being bullied as a child singing “Sticks and stones will break my bones but words will never hurt me.”  Well, words do hurt.  I was hurt by them then, I still get hurt by them now.  I’m incredibly sorry if I hurt anyone out there by words.

The thing is-it really is your own insecurities that make you lash out.  In a defense manner.  I remember being furious at my parents as a child.  I didn’t have the nerve to scream at them, but I was angry.  Everyone experiences anger.  Everyone.

My youngest-wears her emotions on her sleeve.  When she’s angry at me-she’s cruel.

“You’re bad.”

“You’re a mean mom.”

“You’re not my mom”

“I don’t like you.”

“I want daddy, not you.”

Perhaps these are just words that a five year old girl throws in anger.  They come along with a full body tantrum.  She might hit me.  She usually doesn’t, but she screams these words at me with the blink of an eye.  While I’m glad she feels enough strength to express her anger rather than bottle it, I wish it wasn’t every day.  And directed at me.  Every day.

See, the thing is even if you KNOW that it’s not really you, words still hurt.  Hearing someone you love say they hate you, it hurts.  Calling someone names (even if it’s meant to be a joke) hurts.  

I’m not a perfect parent, friend, wife, daughter, sister.  I’m human.  I make mistakes.  But I try hard to instill kindness into my children and most of the time I’m lucky enough to see this in them.  I see the good in others more than the bad.  I became friends with some of those same people that have called me names.  I’m afraid every day that what I’m doing as a parent isn’t enough.  That’s one of my insecurities.

But words mean things.  Say “I love you.” Or say “How are you?” and listen.  Words are powerful.  Words can wrap you in a hug, or they can slap you in the face.

But we need to strengthen each other.  Love strengthens.  So I will continue to model love in my house even though it’s difficult at times.  And I will continue to love.  

Today will be about voting with my daughter and playing catch with a balloon and praising my girls for sharing.  We get to choose what we love.  We were given that gift.  So choose love words, not hate words.

Knowledge is a Gift

27 Oct img_9158-1

I hear plenty about the 4K classroom and how my youngest’s day at school went.  She shows me the new Disney Princess book she got from the library, the letter C project they worked on today in writing, the hanging spiders that had to stay at school, and I know all of her friends’ names.  I usually hear a briefer version from my teenager as well.  But for my middle child, who has Down Syndrome and limited vocabulary, I don’t hear it from her.  

She has limited vocabulary and will tell me that she had a good day, but other than that I am completely dependent on the school staff on telling me what she is working on in school. In other words, I usually guess by her behavior.

Except we are blessed.  We have teachers that go above and beyond.

Relocating and leaving her last team was very hard for me.  Every time I was at her school her case manager or one of her aides would let me know how her day went.  When I stopped there on her last day her teacher gave me a gift for her new staff and school.  A beautiful book filled with photos of her days, her staff, and antecdotes of her school self.  I can fill in her home life, but I can’t decribe school.  She made it by hand and it is the best gift we could have been given.  It told her new staff more than an IEP ever could and I was given the gift of more knowledge of my non-verbal girl.

Over summer she worked one on one with a wonderful teacher who challenged her and rewarded her just as much.  Yes, we were lucky enough to be the only elementary age special needs student enrolled, but this teacher gave her all to my girl.  And told me daily at pickup how those days went.

And her new school…I’m not sure if we are insanely blessed with a great teacher or if amazing communication is this school’s norm, but I get daily notes.  I learn of her successes and what she did during the day.  I also get communication from her 3rd grade classroom.  In the past we have been stuck in an in-between where the regular education teacher tends to assume her case manager passes along everything and possibly vice versa.  

But right now, I’m only going to get a yes or no reply to “did you have a good day?” But that’s okay because I know how it did go.  I know that she enjoyed the water play on the field trip, that she actually ate peas one day at lunch, she can almost roller skate, and that she learned to play Connect Four with a classmate.  I was also given the gift of knowledge and that is priceless.

The Unicorn That Saved The Dog

20 Oct img_9059-1

Five people and three pets means laundry.  Lots of laundry.  Moving into a two story (three if you count the partially finished basement where the washer and dryer are) house had me questioning how I was going to carry all those baskets up and down those flights of stairs.  After all, not too long ago I couldn’t hobble down in the boot.

So I am incredibly grateful for the built in laundry chute.  One door is on the main floor (not used as much) and one door is next to the girls’ bedrooms (used a lot!).  The chute empties into the basement bathroom (the guest/my son’s bathroom).  During the first few days of unpacking I would send my son’s things down the chute.  I’d text him to let him know it was on its way and giggle as I heard the satisfying plop that meant I saved walking down two flights of stairs just to bring him a few spare insulin pump infusion sets.

But again, with five of us in the house I have laundry.  I tried to avoid sending things down the laundry chute in front of my older daughter.  My peanut is a curious girl and a fan of physical comedy.  Watching things move or fall is one of her favorite things.  She used to put toys in the heat registers.  Before we moved I pulled a piece of hanger, a plastic cucumber, two Candyland game pieces, Barbie’s sunglasses and a dime from her bedroom register.  Her discovering the chute is inevitable.  I wanted to wait.

A few days ago I threw in some towels.  And they didn’t plop down on the basement level like usual.  I went to the main floor and couldn’t see laundry piled past the door, only an empty metal duct.  

So back to the top floor.  The chute wasn’t large enough to see in.  And when I stuck my arm in as far as my armpit I felt the last towel I put in.  But couldn’t reach it. 

I don’t have my husband’s problem solving brain.  He’s probably have some amazing way to take it apart or his suggestion was to find the blue bear claw his father had given us as a gift.  My resources were different.  I grabbed my daughter’s hot pink and purple unicorn toy.  It’s the unicorn version of a horse-head on a broom stick.  Instead of being a cowgirl and racing around in her cowgirl boots yelling “hee-haw” she parades in princess slippers and feather boas riding a unicorn. 

The unicorn head stared at me with its plastic eyes as I jammed the stick down the chute trying to push the clothing clog down the chute.  It budged!  So I continued to use the poor unicorn to shift the clothes around until I could no longer reach the pile.  Down to the main level!  Jab, jab, pull clothes, back up to the top level!  Add clothes, repeat.

By now my dog was warily following me back up the stairs probably wondering why I was  making him follow me up and down so many stairs with the unicorn head stabbing routine.  

And then-I found it.   I reached the clog: a big toy puppy dog that had last been seen in my elder daughter’s room… The dog who made my husband and I laugh.  Because it is the beginning.  Soon we will be seeing plastic fruit, Barbie dolls, and many more stuffed animals at the bottom of that chute.  

But next time we might hear the maniacal laugh that means she’s discovered something new.  After all, when I returned the stuffed dog it was instantly discarded along with the request to shut her door.

And me?  I keep the unicorn at bay while I do this.

I Will

10 Oct

One of the gifts that my husband’s new job gave us was the ability for me to be home for a bit.  We don’t know how long  yet.  But it gave me the gift of time.  Being a special needs parent, even just a mother to three means I rarely had me time.  Even reading was usually done with a kid on my lap watching Netflix, I would zone out within my game apps just to focus inward and try to steal moments of inner reflection and quiet.  I was exhausted.  I adore my family, but as a strong introvert I craved quiet.

But now I have three hours a day when my kids are at school.  Last week being the first week in our new house I used those hours to unpack or do laundry and try to get as much accomplished as I could.  But by Friday I realized how counterproductive that was.  The main goal of my “me time” was for me to relax.  To do something I wanted to do and for so long that one things has been writing.  That day I had a lunch date with my husband and then I tackled it.

I enrolled myself in an online course on writing a novel.  I’ve never written one.  I’ve drafted a few starts, I have many plots fighting in my brain, but I’ve never had the uninterrupted time to actually draft them.  But…I do now.  That’s my “it.”  The novel inside that I want to write.  Always have.

I’ve psyched myself out many times writing, thinking “sure I can blog, but how hard is that?”  It’s me drafting my thoughts.  It’s what I say in my brain or sometimes don’t say out loud.  I am hard on myself, so I’ll read what I wrote and hit “delete” not even giving that chapter or start a fair shot.  I compare my writing to some of the incredibly talented friends I have and think no one would read it, why bother until I can write something better?

But that’s not what it needs to be.  That’s not what I need to do.  I just need to write.  All weekend long I was able to enjoy my time with my family.  And this morning I was able to do the mundane housework (and unpack a few more boxes) knowing that after 11:15 I would have my time.  It’s my “me time” and all I wanted to do was write.  That’s saying something there.

Passion.  While I wanted to write, I was stuck and unable to find the time.  I gave myself bits of time here and there, but not enough.  Not nearly enough.  So I am holding myself accountable for writing.  And that blank screen isn’t going to stay blank.  I bought this silly little laptop to fulfill my dream of writing.  I can and I will do it.  I will draft a novel.  Whether it stays in my laptop or is added to the boxes of my old work from my college years, that’s okay.  I’m doing it.  I’m writing.  And I’m loving it.