Wednesday, August 14, 2013


I realize I have been a totally awful blogger lately, I mean once a month is so lame.  Building a house and summer with 4 kids take most of my time- my relaxation in form of really crap TV or going out with friends fills the rest.  Mostly if I am blogging rarely it's a good thing, meaning life is flowing and going well.  I have a million topics always swirling in my head wanting a place to purge them and well that is what finds me here tonight.

 For the most part, we cruise along in life- days turn into weeks, we create memories, laugh and celebrate the life we were given.  It isn't easy our life, but funny enough, Jeremy and I generally don't talk or dwell very much on what we or our children could have had.  We spend most of our time dwelling on what is.  And what that is is pretty dang awesome.  Yet, there are times when we are jolted back to reality.  In those times, I always find the most learning I have to do is right there waiting.

We recently went to Jeremy's brothers wedding and Graham and Audrey were both in it, along with Jeremy.  So, what was I going to do with two babies, because despite the fact that Nolan is almost 3, he is a baby in so many ways.  I hate that feeling.  The feeling of helplessness.  That if I had typical kids, even one of them that didn't need to be carried or could be "controlled" by predictable ways, like suckers, tv, something; we could have brought them.  It races through my head especially during major events like this.  Even more so- maybe Nolan would have been in the wedding- well since two other 3 year olds were and of course they did beautifully.  I can't tell you that doesn't eat me up inside.  Bring tears to my eyes.  I can't tell you I don't want to scream- "why is this so damn hard!".  Because I do all of those things.  The moments flow through as quickly as the tears dry up.  We spent a wonderful weekend soaking up every minute with our amazing "big kids".  We tell ourselves this time is good for us and them, to have our attention and be able to do family things without major stress that babies bring.  We tell ourselves, just pretend we have twins that are a year old- we would leave them right?  It's OK to leave half your clan behind right?  The guilt is a strong hold on my heart. 

There are moments I catch my breath as if I am betraying them by not including them.  I tell myself it's because of their abilities not because of their disability.  It's weird though, like you are phony, pretending to be a family when half of you is gone.  Like you are hiding something- I can't explain it.  Impossible really.  I was taking a zillion photos, occupying my time with children duties and chatting up a storm, normal behavior.  Along with some cocktails of course.  I was trying to get pics of relatives and families together and someone asked to take ours and we both stopped and looked at each other and said, "nope, that's ok."  There is something that stirs deep within when we see a photo of Graham and Audrey and us and no babies in it.  As if we left half of us out.  Why would we want that photo?  It isn't our family.  I know, totally crazy, just our thing.  Then after I took this photo of Jeremy's parents and the grandkids- it was perfection, I imagninged putting it on canvas for them in their living room, and it dawned on me, I forgot the other two, just like that I vanished them and guilt hit again.

Our life isn't just perfect photos and parties.  It isn't a gorgeous house and new shoes.  It isn't flawless hair and smiling children.  It is complicated and messy.  Just like yours I assume.  You realize that the more you get to know people.  Everyone's life is messy.  It's all they know.  This is all we know.  So now that I told you the nitty gritty of dirty, let me let you in on the miracle of roots that come from that soil. 

12 days prior to leaving I found myself with no one to take the babies (long story), so I scrambled, calling relatives, babysitters, trying to mold together times that someone could watch two babies alone at our home while we were in another state!  It's not like I could just find a sitter on craigslist!
 I knew our friends would help, but they have their own children and busy summer plans.  And truth be told it's literally impossible for me to ASK!  So I leaned on family, it is NOT easy for me, in fact prior to these babies, I wouldn't have done it. Prior to these babies- short of being in a coma- I rarely ask for help.  It's a really, really bad trait.  To act as if you never need anyone or anything.  Because I say "act" intentionally.  We all NEED someone and something...sometimes.  So, this acting gig of mine was up.  I actually 100 percent couldn't do it without help.  And there I was in a vulnerable state yet again.  Cursing for having to ask and be vulnerable, wanting to retreat and forget a wedding was even happening.  It's ridiculous isn't it?  I mean I love when I can help someone, it literally fills me, so to rob others of that and to not let them love me back, well that's just stupid. And so, my amazing cousin, who seriously loves our babies and children better than me- and is only 23- came and slept alone in the Abe Lincoln house and rocked them, played with them, sent me videos and pics.  My Aunt Deb joined in the giving and spent the next night and enjoyed some baby time for herself.  And my Aunt Ruth and our babysitter filled in the rest.  They sent me texts of the giggles and praised me on how sweet and well they did.  They shared with me the amount of energy and patience it takes and how impressed they were I did it every day.  They celebrated their accomplishments first hand watching how they have grown.  They embraced their sweet arms and kissed their cheeks and learned some sign language in the process.  Ultimately, we all grew a little closer.  I trusted them with my most valued treasures and they gave me the greatest gift, love and trust that they could care for them.  They were generous with their time amidst their busy lives filled with their demands and on short notice came through and showed up for us.  I can't thank them enough. 

The lesson isn't lost on me that I wouldn't have done this without Down Syndrome and Trisomy 9.  I simply wouldn't have been in that vulnerable of a place that needed people to help.  I wouldn't have known the feeling one gets when those around you rally for you and your family.  To receive that cements in me the willingness to give as much as I can.  On the surface, we may look like our life is perfect and heck almost easy, but it isn't.  We need people, and we are so happy they need us too.  The lessons kept on coming...

When we arrived to the hotel- Jeremy's biological dad is literally in the room next to us, who we haven't seen or spoken with in years despite our best efforts to be loving and kind, we don't meet him with anger or resentment.  Our hearts are healed in so many ways.  We don't have room for baggage of hate and anger.  We have peace.  I was so proud of Jeremy in his speech at the reception for acknowledging his parents and their participation in the wedding and naming Jim and his wife.  He didn't have to do that.  But, always, always he rises to the occasion and does the right thing.  Not sure without our path that would have been as easy as it was for him or us.  Have no idea how they felt or what they thought, but that's just it, it doesn't matter anymore.  We are at peace with us.  Our choices, our path.   
 Every moment I turned and saw beauty, a bride glowing, her step-daughter grinning ear to ear; my beautiful girl ready to walk down that aisle. 

 Little girl shoes and feet, I could hardly take them!  They were so cute.  Their smiles, their hair, their dresses, their spirits. 
 And we danced, for hours, at this point, I put the camera away, no pics, sorry.  You will just have to imagine Graham and Audrey going strong for three hours and Jeremy and I taking turns to keep up.  We smiled at each other more than once wishing Nolan was there, he would have loved the music and dancing, loved it.  It was a glorious weekend of celebration and love and life lessons learned.


  1. This one was beautiful. You have a way of making some one feel your words and your thoughts 100%.

    I use to also struggle with leaving some of my kids behind. Or taking that perfect photo and never displaying it because some of the kids were not in it. And letting that guilt consume me. So here's what I have learned.

    Sometimes it is necessary to leave some of my kids at home so that the entire experience isn't ruined for everyone else. That sometimes I need to go to a function without having to wrestle kids, and worry, and fuss over them...Because sure we would all be there as one whole family, but we would be missing out on the entire event! I have learned to stop feeling guilty when all 8 of us are not at the same place at the same time. I have learned that my older kids deserve to be out with us without my time and energy being spent on the younger ones who demand every bit of sanity I got! I figure that's whats fair to the older kids.

    As for pictures...I use to feel guilty if all the kids were not in the picture...Or if my Nephew wasn't in it. Now I just take the damn picture, doesn't matter whos there whos not. We know were are a solid eight, pictures are just snapshots in time.

    I'm glad you got to enjoy the weekend and the wedding with your oldest. Beautiful pictures.

  2. Aaaand, I just realized how freaking long that comment was! Ha! Sorry about that!

  3. Would love to see more pictures of your other beautiful treasures!! Celebrate in the things they CAN do.. and try not to worry about the things they can't do. Life is too short. God bless!

  4. I can't get enough of Audrey in these photos. Absoutley stunning!! Also, I bet Nolan and EJ had just as much fun spending time with family members and having all the attention to themselves just as G & A did.


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