Tuesday, March 27, 2012

when is enough, enough?

This is one of those posts that I have thought about A LOT...so much in fact that I have debated numerous times, it's true value, or if it's worth putting it out there, but sometimes you gotta jump then look, so here it goes.  When Nolan was born I was over the top, researched day and night EVERYTHING I could get my hands on to make him "typical", more normal, have a leg up and honestly, I was obsessed with it, I knew stats that most doctor's didn't know, google is a scary thing, but also it's awesome when you need it.  Well, I felt I did, it's my way of coping, with really any problem I am confronted with, research it, find a solution, put said solution into action...simple right?  I spent two hours on the phone with the president and creator of Nutrivene-D a targeted nutritional supplement, basically a vitamin geared specifically for areas that are deficient in people with down syndrome.  It was a great phone call, very educational and personal, we spoke about his story and his touching love for his daughter.  It was good.

I also met with an Early Intervention Specialist at our home to discuss treatment options for Nolan, he was six weeks old.  It seemed odd, I mean, he was SIX WEEKS OLD.   This takes early to a whole new level.  It's hard though, because in your heart as a mother you have an intuition that leads you in a certain direction, pulls you to a center of gravity that you feel fits.  Well, this didn't, fit, so to speak, don't get me wrong,  the woman was AMAZING.  I love her, still love her, she is personable, kind, listened so gently and offered great support, I told her shocking, alarming truths, asked her ridiculously annoying questions and still she smiled and graciously held my hand through this journey.  I loved having her there, she was kind of like my confessional a soft place to fall and spill it all.  But, the whole concept of early intervention, well that was a different story.  I couldn't wrap my head around how this was helping my 2 month old, 3 month old, 6 month old, I couldn't figure out, what if anything was going to help him truly develop, would he?  Were my expectations too high? I mean come on, I am known for my type A, over achiever antics, and surely they were on overdrive for therapies involving my son.  I couldn't wait for signing time DVD's, oral stimulation techniques for speech, I had tubes placed in Nolan's ears at 12 weeks, UNHEARD of, but I am not one to lay down, I was fighting for my boy and his success depended on it.

I remember looking at People magazine sitting on my end table.  I got it weekly, loved it, my hour to peruse the pages and live in a fantasy land, I cherished it, and yet, there were stacks of them that hadn't even been touched, but to be dusted around.  I remember my obsession with Etsy and buying adorable handmade dresses for my girl and finding her the cutest hair accessories, planning parties and entertaining, finding new recipes to try out just for fun on a Tuesday night.  I missed my old life.  I sat in that moment briefly and thought, "will I ever be like that again?".  I couldn't right now, I couldn't "waste" time, worrying about my past life I needed to focus my energy on now and what I could do for Nolan.  I couldn't live with the "possible" guilt I may feel years from now if "only I had done one more thing...".  It's an insurmountable pressure, derived from the most genuine, loving place in the world, a mama's heart.  We've all had it, in one way or another, I had felt it before, potty training my first born, thinking surely he would pee himself at prom if I didn't figure this out before he was THREE....but that's the difference, those were trite things that I could now laugh about, they weren't big things, like, what if he never speaks in sentences because we didn't work on speech enough and only a handful of people understand him?  What if he learns to walk later and later and loses so many cognitive abilities because of his lack of gross motor development? What if because of what I have or haven't done he isn't able to take basic care of himself, wipe his bottom, tie his shoes, use the microwave?

You see, there are so many things that as a parent of a child with special needs, you spend your day and night thinking about, analyzing, "am I doing enough?"  Are we ever doing enough?  Is our house clean enough? Are we sweet enough? Volunteer enough? It's the big question of every mother I know.  Not just in regards to her children but in all areas.  It's the MG, mother guilt, that creeps up when you look over at your People....so, fast forward to Nolan not progressing at all, and really taking a long, slow painful path to development, and I kept reading, all of these moms.  They would talk about how slow it was from milestone to milestone, I kept beating myself up, thinking it was me, that if I would just slow down and accept his life and my life it would be fine.  Well, thank God I didn't, thank God I am just crazy enough to finally follow my heart and find out he was having seizures, I am truly grateful for that.

In doing that I have found that this whole Early Intervention, Nutritional Supplement, constant evaluation of progression, it's just not my thing.  I mean think about how you would feel if someone came to your house and stared at your 2 year old and said now, "can she count?"  OK, well can she count to 10, to 20 to 30?  If the answer was yes, then they shoot for more and more, it's seems never to be enough, always more to do and evaluate.  See that's the thing, it's this evaluation of performance that I just couldn't wrap my brain around.  I found myself trying to love my child for Nolan, not his current milestone accomplishment, but for him.  And then, twice weekly, I sat observing and pushing him to do more, show us more, BE more, it just left me icky for lack of better word.  It seemed to go against all that I wanted for him and I and our relationship, I remember when he brought his hands to center and a toy from one hand to another, something I NEVER noticed or cared to notice with my other children, well I was so happy, so excited that he had done it, it felt awesome....fast forward months later, when we would discuss normal milestones to be expected, that most chidden at 18 months with DS are pulling to stand and he won't even really attempt to do that, it feels awful, lousy, like a set back.  It's not good for me, and is it for him?  Still, if I think anything will help Nolan have the best future possible I will do it, try it, drive to it, pay for it, you name it.  I just don't know that this is it.  I am still following through with minimal intervention, once weekly.  It's fun, we enjoy it, Nolan and I that is, and he's doing so well, every week progressing more and showing new skills, he's mastered the "more" sign, closing his little hands and bumping them together, it's so adorable.

I remember hearing once about an analogy of early intervention, that if you put a one year old on a bike every day until they are three and then when they turn three they ride it, everyone says, "OMG you did that by teaching them everyday!" Or really, was that child just three years old and ready to ride it?  That's the question, that's the problem that I can't seem to find an answer to.  Many people will think this is ridiculous, that EI has changed our children's lives, brought them further than surely anything else over the last 30 years and maybe that's true, but more important that that, I believe it's love.  It's inclusion, it's being a part of a family, not stuck in an institution without any chance to learn or grow.  When Nolan's therapist was leaving today, Nolan was playing with Audrey and she remarked, how interactive they were.  That Audrey was reading him a little book and he was tentatively listening to every word and smiling appropriately.  I told her, "that's what I mean, his learning is all around him", all day long, priceless and in abundance, love and support that's what really helps all of us flourish, above all else.  Now I need to go read my People and find a good Gnocchi recipe tonight....I think that IS enough for now.

Wednesday, March 21, 2012


Last night upon being woken by our almost 6 year old, insisting he "lost" his lovie and searching tirelessly all over for it, finally succumb to, "I lied, I hid it to sneak into your bed!"  WOW this one, I tell you he's clever and sneaky, watch out for him....but I lie there, heart pounding mad at his manipulation and interrupting my sleep and leaving me lay there like a preggo insomniac, ideas swirling in my head.  Thinking about...this (amazing video that if you have time please watch.)

World Down Syndrome Day, 3-21.  Every year it's celebrated, talked about, awareness is hopefully raised and at least one person views someone a little differently then perhaps before and isn't that what we want?  Yes.  Lately it's been rough, not gonna lie.  There has a been a lawsuit, that if you aren't in our special world, perhaps you weren't aware of.  It's painful to even send a link to it, but essential just the same, you can read about it here.  The gist of it is this.  The couple with two older children did CVS early testing and it concluded their baby was "typical" and so they proceeded to give birth to a little girl that has down syndrome, they are now stating that, because of this error in testing, they are suing for millions of dollars and guess what? They won.  She is 4 years old now.  They testified in a court of law that had they known she would have down syndrome they would have killed her.  I know that's harsh, I should implant a nice little pc word like what? Terminate? End? Abort? Listen, they would have killed her.  Yikes.  They just "won" 2.9 million dollars for that error.  For a life they have to "endure" with THEIR CHILD that wasn't what they wanted.  Wow.  People.  They just stun me.  The ignorance and naivety.  The craziness, I literally can barely digest.  These "tests" we as humans determine whether life is worth it and to the point that we GIVE PEOPLE money if we mess them up, that is just amazing to me.  I am scared for the future of our culture, this throw away world of anything less than perfect.  I am scared for that little girl, who will likely comprehend what her parents said and did years from now, for her siblings and how that feels to them.  They insist it is for medical care and housing for the rest of her life that they are not prepared to carry the cost of, why did you have a CHILD?  Do you understand they cost money? Do you understand if they get cancer, you can't simply state sorry, you aren't worth it anymore and stop treating them?  You are a parent, the moment that baby is conceived, a life is created and your obligation no longer falls to yourself....ugh, it's tough for me, because I don't stand on a biblical platform, don't shout it's against God, I just simply say, it's your baby...enough said.

Getting back to 3-21, I was thinking about all the gifts that lie in struggle, in hardship, in growing.  It's hard to navigate them sometimes, you look away, live in denial, continue to make the same mistakes because really it's hard to see truth and not so pretty sometimes.  But, our children they are teachers, they are students, and in the end we have so much to be gained by them.  And I feel like Nolan is my guru.  My ultimate teacher of all things beautiful.  There are things that may look difficult and truly are about having a child with special needs, a challenge I didn't voluntarily raise my hand to participate in, a journey I didn't want my life to go down.  But, that's the thing about a guru, you don't know, what you don't know.  I have written numerous times about the influence that Nolan has had on our growth as a family and personally.  The little things he teaches me almost daily.  But, something I haven't written about is what a true miracle he is.  The odds I had at 33 of conceiving a child with down syndrome was .0025, according to our geneticist.  I remember in our first few months, we kept saying that, over and over, we were obsessed with how this happened at all to us, why us?  We couldn't seem to get past it's negative connotation, so focused on the heartache.  But, perspective is a beautiful thing.  When you really break down the odds of his survival, he is more amazing then most births.   Now we see him as a hero of sorts, I mean, first of all something like 85% of all genetic problems result in a miscarriage before 12 weeks, then with early testing about 90% of those that survive are aborted, still another 50% have major health complications upon birth and require major surgery.  That's all from a measly .0025% chance, so my Nolan, he is beating the odds every day.  Kicking and currently screaming :0 his way to survival.  You see, he knows more than me, than you, than most of us.  He is a true teacher.  His lesson plans are deep and subtle.  He squeezes your heart and won't let go.  The moment you stop and think that you can't go on, he pulls you back in and says you can.  And you do.  I only hope that I can give to him a little return on the love he has given to all of us, to make him proud as his mama.  It's the least I can do for my guru.

Sunday, March 18, 2012

23 weeks

So, we did it!  Had our big ultrasound, have been meaning to post and chat about it for awhile, but life has gotten away from me and now I am over 23 weeks already, wow do pregnancies go fast after you've had a few!  It was awesome, aren't they always, ultrasounds, getting to peak into your womb for a little "hey there"....it's magical really.  

I pride myself on being honest, tell it like it is, even when that isn't all glitz and glam or perfectly perfect, so here's what it's like after you have a child with special needs and then go for an ultrasound for another pregnancy.  I have looked and wanted someone to express this, since I found out I was pregnant and I didn't want to feel like the only one, and I know I am not, and heck I know people are curious.  
At first, and really this entire pregnancy I have been at peace.  Knowing that all is right in this pregnancy.  That isn't to say that I know this child will be born free of struggles, I don't, there are a million things that can go wrong and there are some days I go there and think about all of it, but most days, I am so content in knowing we are prepared and strong enough to deal with anything that we face and there is great strength and resolve in knowing that.  

please don't be a thumb sucker like GRAHAM! ;)

So, you know how with your first baby you schedule your U/S like 2 weeks after you find out you are preggo, you can't wait.  You count the days, you know the date, everyone around you is sending you texts about the sex and whether you found out....it's amazing, we did that twice.  We found out with Graham and then with Audrey.  I knew in my heart with both shortly after I was pregnant what sex they were going to be and honestly, no joke, I NEVER thought anything was going to be wrong or "diagnosable" with any of my children.  So, I looked more for, can you see hair?  Are their lips big? Are you sure it's a GIRL!  Then the excitement of how to announce to family members, equally as fun, having everyone guess and then bam, "it's a ...."  SO FUN!

Our third time, we decided to be surprised, Jeremy had always wanted to wait and I felt I owed him that, one pregnancy, in case it was our last, that he could have what he wanted, we had a boy and girl and all the "supplies" needed, so really I had no valid argument.  But, wow, it was HARD to wait, I am a control freak, I like monogrammed diaper bags, names in wood letters tied with bows over cribs, baby books half completed prior to birth, I like to be prepared...just a little!  So, to wait, well, it was all I had in me and it's not like I only have one ultrasound, I have WEEKLY u/s beginning around 32 weeks due to gestational diabetes with all the babies.  So, to not find out, isn't easy, they ask you EVERY.SINGLE.TIME.  But, after about week 30, I was on board, it was fun, it was awesome not to know.  We would stay up late chatting about what would it feel like to have another boy or girl.  What would they look like, there was something special in the waiting, everyone having the same anticipation as us, it was fun.  I was glad we did.  Even though I KNEW it was a boy, 100 percent convinced, I even bought his engraved charm for my necklace, well because, I am obnoxious like that!

love babies feet

So, when all of that excitement was overshadowed by our 72 hour notice of the down syndrome, which you can read about here....http://dreamingbigx3.blogspot.com/2011/01/wowhere-it-goes.html, well it all changed, all of a sudden that need for another boy, well it was just plain dumb.  But, the good news of all of this, is I AM BACK, shallow as ever, hehehe, hoping and thinking that it is another boy and relishing in all the shallow, silly things that we did with all of the other ultrasounds we've had.  At first, when our tech was looking and measuring my heart was pounding, palpitating, waiting for the shoe to drop, the moment she would have a strange look on her face.  Waiting for a comment of needing to call the radiologist in, or talk to my doctor.  I don't know why.  Maybe because as much peace I have with my son and our life, which is all true, at the end of the day, we are changed.  Our naive lives in which you only thought of shallow things is now tarnished.  Are we alone?  No.  Surely there are many of people with these same concerns, who haven't even had our experience, but maybe their age, their history, their own unfounded anxiety's cause the palpitations, either way, they were there.  Did it ruin the experience.  No, but it changed it.  We had our U/S on a Friday and Monday I had my doctor's appt.  I figured there were no markers or indicators of issues, as I was STARING at my tech and new she couldn't be that good of an actress....I know I am a FREAK!  But, still, what did markers mean?  

I mean, Nolan, had three level 2 ultrasounds and over a dozen regular ones, NOT ONE MARKER.  So no markers again, nothing alarming, all is measuring great, perfect.  So, really is it nice not having any glaring issues? of course.  Do we feel blessed that health wise this baby appears perfect? absolutely.  But, in the back of my mind there is that tinge of, you never know.  You never do though.  I have so many dear friends with their own tragic stories of loss, struggle and heartache in regards to their children and their births and deaths.  The loss of a baby at birth full term.  A car accident causing a death of their only beautiful baby girl at 38 weeks.  Others that have chords around necks and breathtaking moments of panic, still others with months passing and no diagnosis, but delayed behaviors and questions for years without answers, even more than that, shocking diagnosis', repeated surgeries with uncertainty and fear.  These are just OUR friends, I can't imagine if I knew the whole world's heartache with children and the miracle that is their births and lives.  All of them, no matter the length, touch us, stay with us.  Imprinting their handprints on our hearts forever.   

I am trying to kiss my knee cap!!

 All I can say, is this time, I am doing what I have always wanted to do and saying screw conventional medicine.  I have found an amazing doctor thanks to a great friend, who is supportive of very little intervention, testing or messing with things!  So, that means, no more ultrasounds, no gestational diabetes testing, I mean it's the 4th time, I know how to manage it, it's never been an issue, so why bother getting that awful test?  And I am "hoping" to do it all natural this time, HA, that may not happen, so don't hold me to it!  But, either way, I can just sit back and enjoy this time, without the worry of some "what ifs" and "guesses" because in the end, that is all it ever is, an educated guess.
That is one good looking leg! :)

So, there you have it, a healthy, perfect baby, in my belly.  I have my energy back, loving this amazingly warm, summer weather and feeling blessed to be right where we are, ready to welcome a 4th baby into our home, knowing and preparing for anything that road may bring.  It's a beautiful, scary thing, parenthood, it's never easy, from start to finish....

Friday, March 9, 2012

creativity flowin'

Searching for the perfect Easter wreath to create for our front door....I searched my beloved Pinterest and found numerous I liked but none I loved, so I went to Michaels armed with inspirational images in my head and after an hour of going up and down aisle after aisle, I saw it in my head, a moss covered wreath, with earth toned eggs nestled inside, with an R hanging from a beautiful ribbon in the middle...painted the R with some earthy egg colors and voila....

It honestly was super simple, just REALLY messy!!!!!  The moss was over the top a disaster, because we have a glass door, I did it all the way around the wreath, and I chose a rather large wreath to accommodate the R, I like it big, but you could easily use a little one too!  

Wednesday, March 7, 2012

the R word

Well, I can definitely say that 18 months ago, I would not be writing this post.  I was you, in fact worse than a lot of you, I used the word retarded in daily life without a thought or care of what impact it may be having on those around me.  I like to think of myself as an educated, intelligent person.  I also like to pride myself on not taking things too seriously and understanding that our world has become extremely littered with overly sensitive and overly hyped causes, which to be honest, annoy me.  So, when I found myself thrust into the world of having a child with down syndrome, a child that most of the world views as "retarded" it stung.  All of it.  The realization that my child is viewed less than other children, maybe not as cute, maybe not as strong, not as smart for sure, and therefor not as valuable.  I also had a flip side, I am careless with my speech, abrasive, over the top, inappropriate a lot of times, swear like a sailor, so all of a sudden I am one of "those" people that is "sensitive"....eww, I didn't like it.  I cringed when I heard a woman say it as I made an appointment in reference to her computer being so "retarded", I swallowed and sat silent as the ultrasound tech said she couldn't figure out the machine she was running because she was a "retard".  I had to let it digest for a bit.  Sit heavy on my heart and figure out what it all meant.

Why did it hurt really?  Was I being too sensitive?  I mean my boy is just a baby right now, maybe later I will have more "reason" to stick up and say something.  I don't want to pin point others bad behaviors, when for so long I was the culprit.  I was the assailant.  Not just for retard, but for, "that's so GAY!"  or "OMG I have had the worst day, I want to blow my brains out."  How about, "I'm a Nazi mom!"  There are so many I could go on, thoughtlessly I threw out words, thinking people got what I meant, I mean come on?  Don't be so sensitive.  Easy to say from the stand point of a privileged, non-tragic life.  Easy to say when your family member hasn't "blown their brains out".  Or someone close to you is gay, or grandparents survived Auschwitz.  How ignorant and truly annoying.  Because words do hurt, more than most anything.  It's words that start wars, gossip that carries through dangerous acts of hatred and betrayal.  Words that take lives of children being bullied.  Words that make us all at some point in our life, feel less than.  So, I want you to take a moment and remember when someone said something to you that stung, that hurt you to your core.  I know each of us have had that moment, maybe when your heart was broken for the first time, maybe verbal abuse, maybe your own parent thinking less of you.  Whatever the circumstance, think of that pain those words caused you, how they stayed with you and haunted you for perhaps years to come.  How easily you can pull them up in your memory when asked, think of this and realize the power we all have.  To create a better, more positive world for all of our babies, a world that we pause and find a different way to say something, because isn't that the least we can do?  

In saying this, I have created a wonderful, but not exhaustive list of words to replace, "retard", please reference this list, and pick a favorite, use as often as you feel necessary, not towards others of course and feel better that in just doing that, you have helped my boy know that he is valued and treasured and not less than!