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"....it 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 out....it'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.

15 comments:

  1. Ohhh, congratulations on your gorgeous new baby boy! And sending big hugs and thoughts of encouragement to you. Your family is beautiful, and your support system enviable. :-) I used to know of a family, another blog, that had two children with different chromosomal anomalies. I can't even remember *who* they were now. It's been a few years since I last heard anything. But I'll try to find out and will let you know. (((hugs)))

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  2. Oh Grace, my heart hurts for you as I read this. But, you are right, you will rock it! You and Jeremy are amazing parents and those 4 beauties couldn't ask for better people to cheer them on!

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  3. I am a follower of your blog and love your strength and determination! In this uncertain time, know that we a keeping your family in our thoughts and prayers! I am also on the Ds baby center board and hope someone will be able to get you some information. As your blog says, you will continue to Dream Big ang Rock your beautiful life!!! Shannon

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  4. Congrats, and hugs, and good luck!

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  5. I'm not really sure what to say...EJ is beautiful but I know how this must hurt your heart...I just want to send you a hug...

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  6. Grace, I've been thinking all evening of the perfect thing to write to you...and I just can't think of it. You'd probably feel like barfing if I said 'everything happens for a reason' right? But I believe that to be true. Your strength and honesty is so inspiring. And I'm so glad you are digging deep and finding a fighting attitude through all of this. If there is anything I can do to help...please don't hesitate to ask. I'm not far away. Hang in there and continue to count your blessings.

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  7. Congratulations on your little guy!

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  8. You are in my thoughts and prayers. You can do this you are a Mom. Being a mom is not easy and neither is this situation but you have the greatest tool you need....Love.

    Here is a link to a blog of a mom with two kids with special needs...one Ds the other cerebral palsy.



    http://www.bringingthesunshine.com/

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  9. Grace, as always I am continually amazed by your strength. As I read your blog and cried my way through it, I found myself also smiling and nodding my head at how poetically you are able to summarize the events and yet still see and appreciate the good. Please know that I am here if you need me and will pray for little Everett and your family. I love you all!!!! Amy Fruth

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  10. big hugs from a virtual friend - I hope that things start to turn back to the better for you

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  11. Grace,
    I read your post on baby center. My wife and I have had multiple children with chromosomal abnormalites, all completely unrelated to each other. We lost our daughter in February. We understand the pain, panic, and fear you are experiencing. You can contact us at our website if you'd like to talk over the phone/e-mail/etc, we're happy to help or just be a sounding board. www.alexandriasjourney.org

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  12. Grace, Heart hugs to you and your family. In all your pain, your hope, and your sincere surety that you will be okay and able to go on, you are so honest. This honesty will keep you sane. Feel the grief, feel the support that surrounds you and holds you up when you need it, take a break when you need to. So many people care. Blessings, Mary Vansteenburg (Woodbury Life Care Center)

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  13. Sending you every bit of strength and love that I possess.

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  14. Grace,
    Congratulations on adorable baby Everett! I have been thinking about you, but I thought you were due a bit later, so this is a wonderful surprise. My heart and prayers go out to you, I can't imagine the emotions you are feeling. You are most certainly drenched in love, and what a blessing that is. Everett has overcome many odds just to be born, so he must be strong and determined(hmmm, sounds like you:)... to be a part of your wonderful family and bring many beautiful moments to your lives!
    Love,
    Elena

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  15. Hello! A friend of mine shared the link to your blog with me. I wanted to reach out and give you a virtual ((hug)). My second son was born with a genetic birth defect called spina bifida. It was so hard to hear the diagnosis and go through all the surgeries, all the ups and downs. We thought when we got pregnant again that surely God wouldn't require any more of us, we'd already gone through so much. I'm learning that God doesn't always work the way we think He should. Our third son was born with Down syndrome. It's hard. Life is so full of surprises. I am praying for you and your family and your beautiful little EJ.

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