The spirit

Often my mind works quicker than my fingers.  I have at least three new posts in my mind, but I either can’t type fast enough or something else comes up and I want to focus on it so other posts get pushed back.  Today is one of those days.

First, if you haven’t read the beautiful post on Kelle Hampton‘s blog today, I encourage you to read it immediately.  Maura obviously touched her family in a profound way and ideally, her story will be the catalyst for more knowledge, awareness and acceptance.  I am brainstorming ways that I can pay it forward and will be #honoringmaura today.

The sweet letter from Clare touched me not only because Maura’s joyous spirit is apparent in her sister’s love letter but because I too have a little girl who is a big sister to someone with Down syndrome.  Ella loves David so much already and is almost obsessed.  She is the first to tell me if he’s crying (even if I’m holding him at the time!) or to bring him toys for tummy time.  She is constantly cheering him on and “good job buddy!” is heard frequently in our home.  Since she’s only three, I know she doesn’t “get” what Down syndrome is about, but it really doesn’t matter.  She loves him and thinks he’s amazing, isn’t that what’s important?

Yesterday, as we were getting ready in the morning she said, “Mama, are we going to have our cinnadone party after Miss Sarah’s house?”  I had no idea what she was talking about so I asked her to repeat what she had said.  She said again, “It’s time for our cinnadone party?”  I said, “Honey, I’m sorry, I don’t know that word.  Can we talk about it tonight?”  When I picked her up she said again, “Mama, now it’s time for our cinnadone party?”  After a few minutes of asking her to repeat it and trying to have her explain it again, it clicked!  The syndrome party!  I had mentioned to Jason & Ella at dinner on Monday night that I want to have a World Down syndrome Day party on March 21st.  They both thought it was a great idea and Ella was obviously so excited she was asking for the “cinnadone” (syndrome) party already!  When I brought up the idea of doing a party on World Down syndrome Day, we asked her who we knew that has Down syndrome.  She immediately smiled and cheered, “David!”  I love her excitement and innocence.  She feels like David has something special and his extra chromosome is a celebration.  And lately, I think she’s on to something.

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The side of guilt

When you’re nearing the end of your pregnancy, you begin to obsess about what to pack for the hospital.  There are 100’s of lists online, in magazines, in books and from friends with suggestions of what to bring.  Every single item is meticulously thought out, obsessed over and probably packed and repacked.  My first hospital bag included music (that I never listened to), delicious smelling reed diffusers (that never left the bag), dum-dums for myself and the nurses (that never got unwrapped) and a video camera (that was never turned on).  And then, when you’re leaving the hospital, that bag is even more full than when you arrived.  There are the hospital blankets and hats for your little one, extra diapers, medications, flowers, balloons, stylish mesh underwear for mama, cooling pads & that water bottle that will never leave your side.  Oh, and the baby of course.  But amongst all the items, there’s one more thing that gets packed up.  It slides in very nicely next to the sweats you arrived in; you may not even know you took it with you: mommy guilt.  Right there between the Desitin and discharge paperwork; small, unassuming but very present.  And you don’t even know it’s there or that you’ve unpacked it, until you do.

The first time I realized I’d been sent home with mommy guilt was when I unpacked the diaper bag at the mall to make my daughter a bottle.  With formula, not breast milk.  Because I chose to.  Oh, the guilt!  (and the looks from other women, but that’s another post for another day)  The next time was when I went back to school to get my Master’s degree when she was four weeks old and left her two nights a week with – gasp! – her father.  Oh, the guilt!  When she was around three months old, I was pouring myself a cup of coffee in the kitchen and Ella decided it was the perfect time to roll over for the first time, right off the couch and onto the floor.  Her first fall happened on my watch!  Guilt!!  It has been an ever present feeling in motherhood.  Right beside obsessive love, mind numbing exhaustion and mama bear protectiveness; the guilt never really goes away.  My daughter asks me to play princesses with her every single day.  I comply about every other day.  The guilt of not playing princesses with her every day eats at me every day.  I am convinced that on my death bed, I will review my life and feel nothing but regret and sorrow that I did not play princesses with her more.  That every mistake she makes in her life, I will attribute to the fact that I should have played princesses with her every day.  (Honest moment – I HATE playing princesses.  I loathe it.  It’s not so much playing princesses as much as it is her watching me play with Jafar, Ursula, King Triton & Prince Eric.  Just sitting there, watching.)

So now I have another little bundle of joy.  My water broke at 36 weeks with David so I hadn’t packed a bag or begun obsessing over every item.  I’m just happy I managed to pack a toothbrush and a pair of warm, fuzzy socks.  I was definitely sent home with the mommy guilt again, only this time, they gave me an extra dose.  When you have to leave your 3 day old baby in the hospital because you’re discharged and he’s not, the mommy guilt is almost as painful as the postpartum recovery.  When nurses know his daily schedule and you have to stand there while they give you a run down of what he likes and doesn’t like, the mommy guilt is palpable.  And when he’s finally discharged only to return a few weeks later because he’s lost 20% of his body weight and the hospital social worker comes in just to “chat”, well, the mommy guilt almost knocks you over.

So, there it is.  I have mommy guilt.  Every day.  Even on the days when I think I did “good job”, I still feel like I could have done better.  I see my friends and acquaintances and think, “They’re doing it right! I need to do it the way they are.”  I always want to be doing, creating, playing, teaching and helping my kids grow.  I always feel a little bit like a failure.  I always think I could be doing more.  I’m secretly terrified of Ella’s high school graduation, when she misses making valedictorian by one point – obviously because I did not spend enough time playing princesses with her as a young girl.  I’m constantly battling with the realities of what I can do today and the dreams I have for my children and their future.  But, I have a full time job, a husband and friends and I like to read, cook, entertain and go out.  So, today, I’m going to let go of some of that guilt.  I’m going to play with my daughter (maybe even princesses!), I’m going to cuddle with my son and I going to count it as success.

ImagePhoto credits Dionna McCarthy Ryan+Dionna photography www.ryan-dionna.com

The roots

I’ve heard “home is where you make it” or “home is where you hang your hat” about a million times, but does anyone really know where it came from?  Who said it and why?  What were they feeling the first time those word were uttered?  I’ve been thinking a lot about the place one decides to put down roots, the place called home.  And, partially because I feel like an army brat and partially because I feel like a hobo I think I have the freedom to make my “home” wherever I want it.

I was “raised” in the Midwest (give or take a few years), I chose the West Coast for my college experience and then the East Coast for my first step into adulthood.  You know, the growing up, living on my own, don’t know what in the world I’m doing but trying to figure it out all on my own phase.  I feel like I’ve lived everywhere!  Every once in a while something will remind me so vividly of a different place that I have called home that I feel a pang of homesickness whether or not I lived in that location for a long time.

The other night, on our way home from a friends New Year’s Eve celebration, I looked up at the clouds in the sky. It was dark and the stars were sparkling and bright and it reminded me so vividly of the expanse of sky at my grandfather’s farm and my early childhood.  Growing up in South Dakota, you can literally see for mile after mile without another solid sight.  It’s similar to the ocean with its eternal nighttime blackness only it’s just land on all sides.  There’s a solitude and a comfort in that great expanse of sky.  And that night, there was something similar and heartwarming about that.

The people I surround myself with have always made me feel at home.  My friends become my surrogate family much in the way I make the newest location worthy to be called home (Stay tuned – there will be even more new places to come!)  Our family is so blessed by the roots we have planted in this season.  We are surrounded by the fertile soil of friendships and even the water of our tears have helped to grow us in this place.  Who knows where we will continue to grow and the next place that we will call home?  But, I’m sure, years from now, some smell or memory will fill me with a sense of longing for this time, this place and these people.

The unresolutions

This year, I’m not making resolutions.  I have tons of things that I want to do but turning them into resolutions usually means I won’t accomplish any of them.  So this year, here are some things I’m resolving NOT to do:

1. I will not compare David to other babies.  I know at least 5 babies that were born around the same time as David.  They are reaching milestones he isn’t.  I could be sad.  I could compare.  But instead, I’m choosing to relish in my extended baby time.  The snuggly, sweet-smelling, cooing, cuddling phase was over so quickly with Ella, I’m going to enjoy every extra second I get with my second-born.

2. I will not dwell on last year.  Last year was not fun.  I cried a lot.  I was scared a lot.  I had a lot of doubt and anxiety.  But that was last year.  2014 is a fresh start, a new beginning and I am going to focus on all the greatness it can hold.

3. I will not make Ella take a backseat.  My first-born is such a sweet, fiery girl.  She loves being hugged and loves for me to play with her.  That’s not going to last.  I want her to feel special and treasured.  I want to play with her as long as she keeps wanting me to.  I don’t want her to feel second best.

4. I will not forget to love and dote on my husband.  Jason was so strong last year.  It was just as difficult for him as it was for me but he still got up and went to work every day then went to the hospital every night.  He remained a full time everything and rarely allowed me to see his tears (even though I know he shed them often).  He was a rock and someone I was able to lean on.  I won’t forget to appreciate him this year.

5. I will not lose sight of the fact that my son is an individual first and his condition is always secondary.  I want to become more proactive and educated about Down syndrome in 2014 but not if it means treating my son like a condition.

Happy New Year!  Health and blessing for 2014!

“What separates people is not the presence or absence of difficulty, but how they deal with the inevitable difficulties of life.”

– Jim Collins
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