Saturday, July 7, 2012

365 days later

I love blogging because I have all this internal dialogue, these thoughts, worries and concerns that have a place, that can be released into the world like a balloon drifting to the sky.  I know somewhere, someone, gets me and it feels good to be gotten.  So let me begin by introducing you to our newest little man!  Mr. Everett Jeremy (EJ) Robbins came into this world on July 2nd at 222 am, yes 2 is his lucky number whether he wants it or not! I want to give you all those details, tell you his amazing birth story and share pics, but tonight, that isn't where I am at and what I need isn't that.  And, I want a magical post all for his own another time.

This post is different, it's sad, happy and everything in between.

A year ago right now, we were injecting our 10 month old with shots twice daily of the most toxic, scary medicine, that he had to have to save his brain and what was left of it.  He was diagnosed with infantile spasms, the worst form of epileptic seizures.  It was horrific, in every way you can imagine, wondering if he would wake up the next day or at all.  Wondering if he had any quality of life remaining if he did make it that far.  Wondering what the next 5 minutes brought and if seizures would continue.  Staring at him, I was scared to go to the bathroom and miss a seizure, documenting every ounce of information I could store.  He would look to the right and I would see if his eye was shaking, he was beginning to blow up and get "moon face" as it is lovingly called.  It was the scariest, darkest time in my life and I can feel it like yesterday.  Tears stream down my face as I type, remembering the pain and fear I had for our boy.  It was that bad.  Top that with major family drama that still remains unresolved and well, let's just say that 2011 was not our year.

So, to fast forward and a year later be typing this with a beautiful little bundle of love laying next to me, it's indescribable.  If someone had told me a year from now you will have another son and this pain and fear will be resolved into joy and celebration. Nolan will surpass all that you expect and be the light of your lives, I would have never believed them.  That's the thing about life, you never know what is going to hit you next around the corner, what miracle awaits.  Or what tragedy.  It's pain staking to think of life like that and so for the most part we don't.  We reserve our big titles for moments such as the birth of a new baby, an epilepsy diagnosis of a baby, the moments that define our lives, who we choose to become and shape our souls and hearts.

The thing is as a parent you always worry.  The moment that baby is in your womb, you are bonded, they are loved and you want nothing more than to hold them close to you forever.  Protected, safe and secure.  But, that isn't life.  I wish I didn't know that first hand, I wish I didn't wear a scar of parenting battle wounds that recently ripped open.  But, that is the thing about tragedy, is the real tragedy is your naivety is forever tainted and your world is now real and raw.  I wanted to write this post before Mr. EJ was born, as pregnancy hormones have intensified everything for sure, but also because it's all I have been thinking of since June 30, the day that changed my life.  But, I couldn't, t was super sick this past weekend with labor and contractions and in no way could focus on writing.  So, all week it's been ruminating.  And this is what I have come up with.  I wish I could tell you that this birth story (EJ's) replaces the trauma of getting a down syndrome diagnosis in the beginning, that it makes it all glorious again to have a typical baby placed in your arms, but it doesn't.  It didn't for me.  I will forever be changed and never again have a birth that I simply look at my baby and don't wonder when or if the shoe is going to drop.  I don't blame down syndrome.  I blame June 30th and going to Children's hospital and having confirmation of my worst fear that Nolan had infantile spasms.  You may be thinking, come on, really? He's so great now.  And he is.  But, let's be real, he's behind his peers with DS and that is all due to the epilepsy that NO ONE caught for 5 MONTHS.  I can't stop the blame of finding out sooner, why didn't I do something more for all that time?  Why didn't I know more?  I will never forgive myself and as a mama you know why.  It's our job to protect our babies, to know more and do more than anyone else.  I know I did, I know I was the only one who brought him and listened to myself when everyone thought I was nuts.  I am glad I did that, I am proud I pushed and shoved to get that EEG.  But, still 5 MONTHS....ugh it hurts my heart.

Anyway, that tragedy much more than Down Syndrome was to me, robbed me of the innocence of life, or that a diagnosis come with big RED FLAGS, because the worst one didn' didn't come with any flags really and that is the scariest shit EVER.  So, now, now, I worry more.  Waiting for the shoe to drop, every little thing about EJ, that he gets overwhelmed by my milk supply (seriously could feed a village!), that he sleeps so much, (I know I should enjoy this!)  But, still I wonder, question, every little movement, oh and the WORST, he startles, because he SHOULD, but it looks exactly like Nolan's epilepsy and gives me ulcers.

Boy, this post is sounding like a ball of depression and I SWEAR I am not, I am so in love and in awe with my new little man.  But, I need to vent, to throw away all this crap swirling in my brain that shouldn't be there.  I read a post of a fellow blogger who also had her baby after having one with down syndrome, just a couple weeks before me and she mentioned this same struggle, flashbacks to a very stressful, painful time.  Scarred we are.  Our hearts nervous.  She said she was "borrowing trouble" and that is very much how I feel.  Nonsensical worry during a most precious time.  So, I let myself go there for brief moments and then I breathe in the perfection of a new baby.  And as I left the hospital on July 3, 2012 I walked out holding him thinking of July 3, 2011, I was walking out of the Epilepsy unit, holding Nolan, my eyes puffed and nearly welded shut, wow...what a difference a year makes.  A perfect miracle to heal this mama's heart.  It's working, slow and steady, it's working...more to come soon on Ej's birth!


  1. Thank you for your frankness. I so understand the intensity of your emotions. Wow, what a year(life), eh? Enjoy that lil' EJ--can't wait to hear all about him!

  2. Congrats on Mr. EJ! I can't wait to see pictures and hear all about this new addition. I bet he's just as absolutely adorable as his siblings. I also can't wait to hear what they think of this new little one.

  3. Congrats on baby EJ!! We demand pictures!! lol

    I understand totally what you are saying in this post...Although I never had another baby after Russell I am fearful anytime one of my close friends or family members has a baby...With my sisters baby I worried constantly (still do), just thinking something was going to happen...Something would be "wrong" with him...After everything we went through at Russell's birth you just realize anything could happen at anytime, and it's just hard to shake that feeling...It's like there is no going back to that perfect bubble I felt I use to live in...You said it perfectly, Our hearts are just more nervous now...

    Enjoy EJ :)

  4. So very well put! It is very hard to have a child after you have already given birth to one with special needs and especially epilepsy - I know this first hand. I remember being so paranoid after my second daughter was born watching her every move and even talking to the neurologist and having her look my little one over when we were in for our routine 3 month visits with her. If her eyes darted weird (which infants commonly can have nystagmus)I freaked out thinking this is it she is having a seizure. Or any tiny little jerk of her body I would assume was also a seizure. There is something about epilepsy and more specifically infantile spasms that put you more on guard than you ever expected you could be as a mom. We too tried the steroid injections and our daughter almost became one of the 25% mortality statistics. She was put in the PICU with liver failure among other things from what we were putting into her to make the infantile spasms stop. You have to give your self credit for fighting so hard to have an EEG done to confirm what you as a mom already knew. You were so strong when Nolan needed you and you continue to be for all of your children! I do not think anyone ever truly wants their child to have special or medical needs of any kind, but once you have that little bundle of joy in your arms how can you do anything but love them and want to make their life the best quality possible. To this date every time we end up in certain hospitals for any reason I have post traumatic stress from when my Emily was an infant. I don't think that will ever go away. However, as she gets older and things become more stable for her I quickly forget the struggles she was faced so young and overcame. Now EJ is here to remind you that life is not always struggles (except for the obvious lack of sleep). :)

    Congratulations to you on your new beautiful baby boy!!!

    Kristy Kargel


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