Sunday, October 11, 2015

ice cream

I have always been a bath person.  I am sure it started as a young girl, my dad, yes, rather odd, was a bath taker and my mom would chat with him, solving world problems I assume while he took his bath.  So, in turn, I somehow am also a bath taker.  Some people., my husband among them calls this practice, human soup.  He obviously hasn't had the experience of a Lush fizzy ball and I have no desire to share it with him, I'd rather it be a mystery and leave me alone in silence for a solid 15 minutes.  Every time I take a bath I go through the same process, I mean, every. single. time.  I can see my first pregnant belly emerging from the water and watch my heart beat pulse the bubbles.  I see Jeremy's and I's first house in St. Paul, a vintage charmer, and well, only had a bathtub, and a "shower" in the basement with a work light clipped on so you could see, and yes, Jeremy would use that to avoid, human soup.  I loved that house, the first thing we "owned" together, making our memories, and we got pregnant in that house and moved out of it 3 weeks prior to giving birth to Graham.  So I have many human soup memories there, as I had a lot more time to simmer back then.  I remember getting so sick from morning sickness, so ridiculously named, as it was 7pm and puking in that wonderful vintage bathtub and leaving my husband to clean up, hmmm, maybe there is in fact a reason he refers to it as human soup.  Anyway, I can remember rubbing that belly, dreaming of a boy or girl, hair dark or light, thick or thin, my eyes or Jeremy's, likes sports or academics, those dreams were alive between my baby and I in that luke warm water, oh yes, I knew not to take "hot" baths when preggo.


I graduated to a big, beautiful master bath tub, one that engulfed my large belly and made me feel a lot less large, which at 9 months preggo was much appreciated.  I sat there rubbing and dreaming away.  I also took a bath with every single labor in that bathtub, our 2nd home.  It didn't matter if it was 4 am or midnight, I was clean and had makeup on ready for the hospital in between telling Jeremy to shut the F"": UP!  Just keeping it real. 

So, as with all the babies, I remember each one and our time in that bath, our alone time, both when I had just had them and brought them home and we would bathe together and also when they were in my big round belly.  The dreams, the images, the endless possibilities.  I remember so clearly thinking of Nolan, his name, and hearing it over and over, Nolan Robbins.  Pitching for the MN Twins Nolan Robbins.  Convinced he was our athlete.  Our risk taker.  I also remember painstakingly the day I found out he had down syndrome 72 hours prior to his delivery and rubbing that same belly and thinking horrible, terrible, dreadful thoughts about what he would look like, sound like, be like.  It breaks my heart now to know those thoughts ever entered my mind.  Brings tears to my eyes, now not because I am sad I had that experience, but because I am sad that I wasn't more educated and knew better.  I was wasting tears over something that in fact was one of the greatest gifts of my life. 

I went to the Taylor Swift concert with Audrey about a month ago and it was one of the best nights of my life.  Our girl and I just singing and cuddling and embracing the moment in every way.  It was perfection.  I told her kissing her goodnight that it was the top 5 moment of my life and she said what were the 1st 4, and I answered the births of all of our babies.  I realize now I forgot our wedding day, which in all honesty was awesome, so I do feel bad for forgetting, but either way, it came out that way.  And truth be told, with the stress that came knowing Nolan would have down syndrome and Ej's dramatic birth, I still hold those 4 days as my top.  I became a mama, 4 times.  It's magical becoming a mama.  No matter what chromosomes or deformities, or perfect nose and eyes, it really is magic and a miracle.  I treasure each and every one. 

October is Down Syndrome Awareness month and I feel that it is my duty to educate anyone I can, even if it's one person in Germany, to say, our son, Nolan, is here and worth every minute.  He is a human, a person, he laughs, he cries, he has demands and opinions, he isn't a creature, a monster, something to fear. 

Tonight Jeremy and I left Audrey and Graham at home and took EJ and Nolan to dinner at one of our favorite Mexican restaurant's in St. Paul.  When we were out, we hugged them, tickled them, colored with them, fed them, laughed with them, and simply adored our time with our boys.  I said to Jeremy at one point, "we are out with our two that have special needs, not our typical kids." Jeremy said,  "I don't notice things like that anymore."  I hadn't either really, but for a moment.  I was enamored with our boys.  I was in love with their smiling faces, coos and signing for more chips.  I am so proud of how far Nolan has come in his language skills and the absence of screaming at dinner.  We talked briefly how every stage of parenthood has the pros and cons.  I just love our boys.  Our little boys, their blond curly hair, the smiles that radiate from sun up till sun down.  Their hugs and kisses that fill your heart with joy and most of all, just them.  I am not embarrassed of them, quite the opposite.  I can't wait to show them off, to proudly walk with them, telling the world different is better than good, it's amazing.  It's what makes people exceptional.  Talk to anyone you know about their life and the ones you admire most will talk about their struggles and the work they did to overcome them.  It's life, our growth comes from digging deep, trying our best.

Tonight Nolan ate his meal, chips and salsa, flautas and refried beans and then when the waiter came to ask if there was anything else we needed, Nolan touched his arm ever so gently and said, "ice ceam please".  Yup, that is all we needed. 

Tuesday, September 8, 2015


The day started amazing.  Kids were all in great moods ready to head for the 2nd week of school.  Nolan still as excited as last week with his big backpack on, a grin and waiting for the bus, another day at his "practice" Kindergarten, we are doing two years of K, since he is so young.  EJ slept late and woke up happy as can be, a rarity for him.  It is gorgeous and 70 degrees outside. EJ's big day, starting preschool officially.  I took the adorable front stair photo and he was all grins.

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 I smooched him up and down and appreciated our moment together alone, since all the others had already left on their bus.  Grabbed his lovie just in case he needed an extra snuggle, put it in his backpack with his name proudly monogrammed.  We put on his AFO's (braces for his feet); he can't stand them because I don't really ever make him wear them, I figure he will walk in his own time.

We park and arrive 5 mins prior to class beginning, I am greeted by the Special Ed Director, who took over the program about 2 years ago and has done an exceptional job and is a joy to be around.  I told her such and we chatted about the great changes in the program since Nolan started there.  This will be a mixed class, typical children and 3 children with special needs, EJ being one of them.  We walked by all of the students waiting anxiously with their parents and got to go in a bit earlier to see the space and chat with EJ's amazing teacher, she seriously couldn't be more kind.  I had no feelings of sadness or envy walking by all of the typical 3 year olds.  I had no experience of wondering what this day would feel like..."if only."  I am pleased to say I was at complete peace.  There he sat, so adorable and smiling to everyone, brave and happy, not clingy or grunting to be picked up, which he typically does.  It was far better than I could have imagined.

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As I filled out one last form, a little girl sat right next to him and her mom backed up to get a picture of her at her spot.  I noticed she may have Down Syndrome and thought, well won't that be great for EJ, a friend with similar abilities, some children are much more involved and some much more advanced in these classes.  I remember the doctor telling us the day after we found out EJ had Trisomy 9 Mosaciscm,  that Nolan would be more advanced than EJ, he would need more help.  I couldn't swallow that then.  Couldn't imagine anyone needing even MORE help than Nolan at the time.  Now, well, it's become our life.  And in all honesty, I felt like EJ has been doing really well.  He follows simple instructions, go get a bowl, grab a book and he knows what he likes and doesn't.  He can't walk, but he cruises and scoots everywhere.  He can't talk, but knows some signs.  We were progressing fine.  So, I smiled and saw her name, asked her mama if she had DS and informed her that our son Nolan did as well, EJ's brother.  She was kind and up came the little girl, walking confidently over to us, after hanging up her own backpack and giving everyone high fives, including me.  Someone asked her name and she spoke it clearly and enthusiastically.  My heart sank and began beating at top speed.  I was flush and felt like throwing up.  I glanced over at the boy I just moments ago was admiring and found myself staring at all the things he couldn't do.  He was still sitting on the bench looking around, only now all I saw was that he couldn't get down.  Couldn't speak to ask for help or say mama even.  Instead of seeing my sweet, content boy, I saw a boy that wasn't capable.

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I looked everywhere for an emergency exit, knowing my mommy meltdown was coming.  I confidently and completely faked the rest of the next 5 minutes.  As I heard the little girl's mom explain to her that if she needs to go potty to say potty, which she clearly said, "potty."  Wow, potty training too? So she is more advanced than Nolan too.  Wow, I have really failed my boys.  I have really dropped the ball. All that was running through my head was the following: "What have you been doing Grace? What was more important than helping your boys develop? How could you have been so selfish with your time?  And here you were feeling on top of the world, how dumb."

I got to my car and was stunned, totally unprepared to have those feelings railroad me and so strongly.  My moms of kids with special needs will know, this is it, these moments that just take your breath away and you never know when they are going to happen.  It's awful.  I started crying and called Jeremy who was on a plane with the door closing, so I simply blurted out that I have ruined our kids lives and suck as a mom and I have to go anyway and hung up.  Which I am sure he totally appreciated.  Moments later, my phone beeped.  Jeremy sent a text simply and perfectly stating, "Love- e and nol aren't that little girl.  Just like G wouldn't like or play baseball until he was ready, please don't beat yourself up.  They will develop as much as they can when they are ready."
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It soothed my guilt and blame for a moment and still it kept churning in my head, what if my theory of kids developing when they want regardless of tons of therapy is wrong and I held Nolan and EJ back from developing skills that will help them for the rest of their life.  If I had just done more.  I sent a text to one of EJ's first therapists- we have developed a friendship and I so appreciate her.  She immediately called and I burst into tears, explaining what happened.  I said to her what I believe to be true, that having kids with special needs is different because we are taught we can change the outcome of their lives based on therapies, basically our efforts.  She explained her own life and children's sports for instance when she thought she could've done more, hired another private coach, advanced her children in areas they loved because the other parents were doing it and she didn't want them to fall behind and lose the chance to do what they loved.  That her friends would tell her that she should have in fact done more.  It is all so messed up isn't it?  We got off the phone and I felt so much better, realizing this is just life.  It's not OUR life that is isolated with these issues anymore than anyone else.  It's just different.

It also struck me two of my favorite quotes both came into play today.  "Comparison is the thief of joy." and   "Perception is reality."  So I bucked up and realized how lucky we are in all we do have, and all of our children may do things or not do things throughout their lives that we will surely wish were different, but in the end, it's not about us.  It's not about measuring accomplishments, it's not about potty training the fastest, speaking the most words, being the best baseball player or an amazing student.  Life is about connections; and EJ is great at that!  I am happy to report he had an amazing first day, no need for his lovie, played happily with the kids around him and smiled at everyone. Just another bump on the roller coaster. 

I will leave you with what has been making me smile, ear to ear, since it happened, our annual end of summer birthday celebration for Nolan and EJ.

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Tuesday, October 14, 2014

brush your teeth

I've been contemplating this post for 14 days.  October is Down Syndrome Awareness month and as such many bloggers are writing beautiful stories about their lives and sharing their love for their babes with an extra chromosome that has enlightened their life and well I sat here thinking, REALLY?  I need to advocate on why this guy deserves to be here?
 It seems so odd, so redundant.  Like, 'Hey brush your teeth if you want to keep 'em!'.  But, that is our reality isn't it?  Wow.  It stuns me to think; that was me.  I had a 72 hour window of knowing I was about to give birth to a little baby with down syndrome.  All that swirled in my head was awful, horrible, tragic, life changing images.  Nothing positive.  Literally nothing.  It's disturbing really, because it isn't reality.  And that is where I like to dwell, in truth.  The truth is-he is a beautiful, happy, silly, sometimes a naughty little boy.  I didn't know that.  Our society wants to take anything worth working for, anything that is less than perfect, anything that will be a tad more difficult and say, "whoa- who wants that?!".  So, I didn't.  I wanted to run away.  I wanted out.  I can see how so many mama's make that choice.  I don't judge it, I completely understand it.  We are programmed with everything in our lives to find better, do better, for ourselves.  If your marriage doesn't make you happy, get a new one.  If you don't like your job, quit, life's too short.

But, in reality, life's treasures are earned, worked for and sometimes suffering is a part of that.  It wasn't difficult to fall in love with Nolan, that was the easiest part of this journey.  And I thought it would be difficult for others to do the same, and well, that was totally not true either, everyone I encounter loves Nolan.  Not because he has down syndrome.   Because he is Nolan.  He radiates love and acceptance.  He makes people smile, all people.  All of the time.  Our kids are shy, both Jeremy and I were shy as a kid and well not so much anymore, but Graham and Audrey definitely.  If you know our family, you are so happy when one of our children greets you with open arms, because it probably took 4 years of knowing them to do so. But, not Nolan, he runs and gives kisses and hugs freely.  He fills everyone's love tank daily. 

 As I sat in the hospital bed with his new little baby scent and soft baby skin.  It was perfect.  It was all that I dreamt of.  It was the world that I didn't want to take him into.  I remember hiding him in my baby carrier, hoping no one noticed.  Happy if anyone told me that he "didn't look like it".  Now I cringe at those thoughts.  Can't imagine being ashamed of my sweet boy.  But, I wasn't.  The world is.  The world see's him as less than, and therefor we all do.  That isn't right.  Forget fair, forget politically correct.  It isn't right.  He deserves your respect and love and attention like any of our children. 

Graham said to me this morning the first time ever that he just randomly brought it up, "If Nolan were regular (insert cringe here) would he like and be able to play Lego's?"  First of all we talked about what 'regular' meant and then I said that yes, he would be able to and probably like Lego's.  He then followed it up with, "I just wish one of the babies were 'regular'. So, I could play Lego's with them".  I cringed again, but understood his point.  The conversation quickly moved along, but it was swirling in my head today.  This is what I talked with him about tonight.  That we don't know how we are going to get along with our brothers or sisters.  That I barely talk to my sister and we are different people.  Doesn't mean she's bad or I am bad, just different.  It is a gift when we truly enjoy the same things and play the same games with each other regardless of our abilities.  And it's true. 
 There will be many more conversations I am sure about what is different or annoying about having brothers with disabilities.  But, we would do this anyway, with any brothers.  We all love and loathe numerous things about all kinds of people, their intellect has very little to do with it. 
 I can't say that I get the whole magical unicorns and rainbows of down syndrome.  I wouldn't preach it like that, because to me, it's a tough job raising kids.  It takes all of your heart and soul to try day in and day out to be the best you know how and whether or not they have an extra 21st or 9th chromosome doesn't really matter.  They still make you smile and melt and scream and shout. 

I thought and imagined that our family would be "different" that our friends wouldn't want to be with us anymore, because our kids weren't like theirs.  I know it sounds ridiculous to our friends.  Because it is ridiculous.  I wish I could take a mama with the news of any baby with struggles or differences and show her our life.  Our wonderful, beautiful life.  It's not because it's easy.   It's not because we are amazing.  It's a choice.  Happiness and love are choices and actions.  We live.  All of us.  All of the time.  We have fun and welcome all people into our home.  And if you were invited your would see we are a family, complicated, messy and so full of love (and stiff drinks!).  This life is all I dreamed it to be, the only missing piece is the rest of the world.  So, dreaming big and starting small with all of you. 

 So, yeah, brush your teeth if you want to keep them and love people for who they are and what they offer this world.  We are all just trying our best.