Wednesday, July 18, 2012

lightning strikes

well, I have sat and pondered this moment, for what seems like eternity, but in reality just 7 days.  7 days ago, our lives changed....AGAIN....monumentally.  Life is like that, when you think you are still and all is good, when you are championing yourself for the best accomplishment, like bringing 4 kids under 6 to a beach, you feel good, like you want to pound your chest and shout from the rooftop, I DID IT!  I ROCK....oh how I wish I did.  Right now, I feel more like crawling under one.  I live in truth, something that has often gotten me in trouble and found me in situations that I regretted, but still I trudge forward and know that truth is always the best policy.  So, today I write this and it isn't for me, because as I said, I would like to runaway, shut down this blog and Facebook and really live on an island where no one knows me, but that isn't my life.  That isn't what I am supposed to do, I feel that and believe that.  So, I write.

I had let go of our 2nd nanny in 3 weeks the morning of the 11th, 10 minutes after I let her go, we were getting ready to go to the beach and I was packing up things and Nolan decided to climb the stairs his new favorite habit, he was on the top landing and I heard the fridge door beeping indicating it was left open, went to shut it and walk back and I heard his body catapulting down the stairs, I caught him just as he reached the wood, and I was shaking, crying, scared, but he was fine, thank God.  After holding him and feeling my heart calm back to normal- I packed up all the kids, determined to make this a great day with mommy.  It was, we went to the beach and met friends and had a good time.  I got home and got G and A watching a movie and Nolan to sleep and I was just feeding Everett, after I had stripped down my swimsuit and put it in the washer.  I left my shirt off to feed him and so when the doorbell rang and I was upstairs, I thought, ugh, go away kids in the neighborhood, it's nap time!  Then it rang again, and I asked the kids to go look over the landing and see who was there, they said it was "a girl".  My phone then rang and it was my dad, checking in, and we were chatting about him bringing dinner in a few hours and hanging out.  Then it rang AGAIN, ok now I am annoyed, then my phone clicked in, "sorry dad, hold on a second" was my doctor....she said, "Grace aren't you home?" I put two and two together and said, "Dr. Carpenter?" Are you the one ringing my doorbell?"  Yes, she stated.  I told my dad I'd call him back and my head began swirling as I put my shirt on.  Why was she AT MY HOUSE?

EJ was born on July 2 and I wrote about this before, that I just felt something wasn't right.  A Neonatalologist looked him over and said he was perfect, and no concerns AT ALL.  Still I couldn't shake it and I said I want the genetic testing.  She insisted she wouldn't recommend it, but if that is what I needed to calm my nerves, then do it for peace of mind.  So, we did.  We got the initial test results that are 98% accurate back 3 days after he was born, all was normal and perfect.  We breathed easier, but still I couldn't shake it.  He was eating great, strong, had all the reflexes he should, making eye contact, but still I couldn't think that he wasn't right.

I said, "Dr. Carpenter, what are you doing here?"  She said, "oh Grace, it's EJ, I got the final results from his genetic screen back."  I kept screaming, WHAT, WHAT is it?! I couldn't stop saying that, over and over, I started shaking, she started crying and I started crying...she explained as best she could that it is a rare chromosomal abnormality that doesn't have a name it's so rare and there are only about 40 cases in the US and she had never heard of it even.  I couldn't breath, I couldn't think, I couldn't move.  I couldn't do anything, I wanted to die.  That is the truth, I wanted to die.  In that moment, that is all I wanted, to be gone, because I know this pain, this familiar pain, was all too new, too raw to live through again.  She held me and my boy, who was wrapped snugly in my arms.  Tears soaked his beautiful soft hair.  We cried and cried and she sat with me, I swore A LOT.  I screamed, I howled, I felt like I was on another planet.  I called Jeremy.  He was downtown Minneapolis at work and Dr. Carpenter took the phone to explain it to him and sat with me until he arrived.  I called my dad back to tell him to come over immediately.

How does this happen?  How does lightning strike twice?  I don't know.  No one knows, there are no answers.  We had to get a ton of tests on him the next day at Children's.  Jeremy and I are angry, depressed and feel defeated.  It's the truth.  Jeremy said it best, "with Nolan we were triumphant, we can do this, now we are defeated."  You work so hard to wrap your brain around a life for your child that will be challenging for your entire family and then to do that again?  It's nearly impossible.

I wanted to write all about the fairytale, the happy ending to our struggles the last two years, we don't have that yet.  I do believe we will.  I know we will survive this.  We will more than survive this, we will make this our life, our beautiful life and we will raise our children to be happy and healthy, all of them.  I know that.

So many things race through my head, maybe it's nothing, maybe EJ will develop normally and we won't know his future, could happen?  Sure.  I know now, ANYTHING can happen.  I have scoured the internet for a family with two babies with chromosomal issues and I can't find anything.  Why? Because most die in utero.  He looks so amazing, smells so sweet and snuggles so perfectly.  How can anything be "wrong" with him?".  And yet, there isn't.  He is picture perfect healthy, and strong and that is all I would know if I hadn't pushed it.  I think all the time, why did I?  Jeremy didn't want to, he didn't think for a minute something was wrong, why couldn't I let it go.  How are we one in 5 million that has this happens twice, back to back pregnancies and carry to term?  It's insane.  We used protection, we tried to avoid getting pregnant, none of that matters, but swirls in my head.  He is our son.  Our EJ.  Who just looks at me so softly and says, "love me....just as I am...."  It shouldn't be so hard, right?  Why is it?

I mourn that I will never again hold a typical baby, watch them grow and explore and learn, I mourn that, like you can only imagine.  I couldn't stop crying, couldn't hold it together at the hospital during all the flipping tests, just kept crying.  And my husband, seriously the most amazing man on earth, kept holding me, hugging me and saying over and over, "it's our life babe, it's gonna be OK, we are always gonna be together."  I would breathe that confidence in and then break again 5 minutes later, and he would repeat it, over and over all day and all night.  He kept holding me and saying, "I will be strong for us, always, I will hold you forever."  My seriously so compassionate doctor, left her cell phone after sitting and crying with me for 40 minutes, she is spectacular.  My best friend, dropped everything and sat here and listened and cried with me.  My aunt Deb, just landing in DC to be with her hubby and son on a trip, heard from me, hysterical and went to another plane and flew home, for me???  Amazing.  My dad, took our other three kids and gave them the world and spoiled them rotten, grief stricken himself, he held it together for them, thank you dad, thank you more than you know for that.  My in-laws came here and brought food and drinks and sat with us, for hours.  My mom gave me hope and refuses to be sad or think anything other than positive.  My aunt Ruth rubbed my back endlessly as I sobbed and sobbed and offered to sleep over in case I woke up.  Other close friends, called and text and offered to do anything for us.  We are so loved.  Drenched in love.  The only beauty to tragedy is that realization, that otherwise you may miss.  How many people truly love us and our family and how deeply their hearts are breaking for us.  I was so sorry to break their hearts, with each phone call.  I thought of the moms on here in the special needs community that were also excited for us and to hear this news will break as well.

Listen, this is devastating, I am not gonna lie or sugar coat it, or tell you some magical recipe of hope.  Because I have been down this road and I know the effects and how long they linger and how painfully they strike you at random moments, when you realize that your life isn't what you planned.  It's not what you pictured, it's not what you dreamt of.  And to make that all worse, it's not what anyone else wants either.  But, truth be told, my heart is healing and hope is filling in the wounds and tears are falling less and snuggling a fresh, new baby helps.  Love helps too, knowing we are supported and loved from corners of the earth and that all of our kids are so loved.  That we live in a community that will embrace us and help us along and not pity us, but encourage and high five the good times, and hold us for the difficult.

We are so blessed, in so many ways and I truly mean that.  I have an amazing husband, we have our health and all of our children have theirs.  We have financial means to take care of us all despite these challenges that lie ahead.  And we have all of you, cheering us on, ready to watch us make history, (a little too dramatic??) and rock this's all you can do, right?  I am afraid that my kids need me too much to run away and I want nothing more than to make every day amazing for them, to show them whatever happens to you, you can choose to do it differently, choose to make your life incredible.  So, go make that choice.  We are gonna do it every day.

Monday, July 9, 2012

Everett's Birthday

It was Sunday night, July 1st, 2012 we went and had mexican with the kids and came home nothing out of the ordinary.  We started watching Newsroom on HBO, (FYI if you aren't watching it, you MUST, soooo good!)  I started feeling contractions, more intense than the typical Braxton Hicks that I had been having for weeks.  They were very irregular, so assumed labor wasn't starting, finally the pain grew so intense, I got in the bath to relax at midnight.  At 1230, I told Jeremy this is it, I am going to call the hospital.  He called his mom to come over and stay with the other kids.  I proceeded to dry my hair and apply makeup, YES I am that VAIN!  Jeremy is laughing in the background saying "you are the strangest chick in labor!"  And truly I am....I am pretty quiet and calm and don't trust my pain threshold so begin to wonder if this really is labor until about 5 miles from the hospital, when they were so intense, I was begging Jeremy to stop the car, don't move, don't go over any bumps...I was beginning to panic, it was so intense.  We arrived at the ER around 115 am and I was EXHAUSTED, and the minute I got into the room, I begged for drugs, HA so much for natural labor...the nurse was silent and I kept saying, are you calling someone for drugs, I need them, still silence.  Finally, she checked me, said you are a 9+ and ready to push, no time for drugs....wait....WHAT?!  I thought I had an exit plan, it's only been an hour since labor really began and you'd think, how hard is that? My doctor was being called in, whom I love, but I didn't care if an intern delivered me at that point, I needed the baby out....still they wanted me to wait a little bit for her to arrive, I was SO HOT, wanted to walk around, didn't want to be on my back, finally a nurses aide saved my life and brought me this was awesome, :)My doctor arrived and said, "let's go!"  According to Jeremy she arrived a little after 2am, it felt like I was pushing forever, but really it was around 15 minutes, what a WHIMP! 
I pushed on my back and I begged and begged to get up and move around, I had to get up, jut instinctually wanted to, had no reasoning, the nurses kept saying no, finally my doctor, said do it, do what you need, I got on all fours, yes I know, not a pretty picture, pushed once and bam, the entire baby was out!  It was amazing, a sense of relief, accomplishment and pure exhaustion washed over  me.  Everett Jeremy was here.  It was spectacular.  Not the natural part.  Truth be told, I liked my medicated births much better, they were calm, controlled, happy and peaceful, this was chaos, loud and crazy and quick and intense.  Either way they all ended in a bundle of love and truly that is all that matters!  I wish I could tell you the natural way was so much better, but really, I don't feel that way!  I could get up and around quickly, very quickly, had zero medications, no IV, nothing, which is pretty cool.  He was very alert and cried almost 4 hours after, I thought right away when I saw him, OH NO it's another Graham man!  We love Graham, but man he was an intense baby and so was EJ.  The difference this time is 10 fold.  We are at peace, with our fourth, knowing the tricks of new babies, confidence with an experienced mother and truly it's so awesome when you don't have all that stress of being a new parent for the first time.   

 The best part about a new baby...the excitement, the phone calls, the announcement of a new dad seeing EJ for the first time....

The kids, well, they were hilarious, jumping on my bed and going straight for my food!!!! Leave it to them to be more into what to eat than new baby, either way, it was great to see them, embrace them and introduce them to a new baby brother.

And this guy, oh Mr. Nolan, he wanted to grab him right up!  He was happy to see daddy, but shockingly wouldn't come to mommy, as if to say, "you replaced me as the baby, screw you lady!"  Ahhh he will grow into his role of big bro soon!

I love this shot, can only imagine what Miss Audrey is whispering in that little ear!

Grammy loves all her grand babies and Nolan especially loves her!

My mom, enjoying the moment of a brand new bundle.  His name Everett, is my mom's Grandfathers name.

My most AMAZING doctor EVER, she's so great that she makes me want more babies just to see her more!  She is family practice so at least we will see her often!

Jeremy got this shot when he was a day old....something I never saw Nolan do as a newborn, so it's nice to see, the little dreaming smiles....melt my heart.

Speaking of heart melting, Mr. Graham can't get enough of baby EJ, he and Audrey fight over holding him ALL day long, EVERY day!  They adore him and being big bro and sis all over again!

What I am not a baby anymore????

I am not calm all the time!

Miss Audrey and her baby love....

Papa and baby

This is his one week old pic taken just sweet...I am sad a week is already over!!!!  He is an amazing sleeper, and being my 4th I take full advantage!  He sleeps from about 12-7 already!  I wake him usually between 7-8 to feed him, but otherwise, snoozes away.  I do know this can change any night, so just appreciating it for now.  Also, since his day in the hospital he barely cries, he is a very chill little man and just stares and takes in all the chaos around him!  We are in total love and feel so blessed to be on this journey again.  Oh and remember I put in writing I was DONE and NEVER again, how can you say that, when you are holding this little man all day????? :)

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!