Emotional Days

Precious Avery looking at mom and dad on 8-29. We both love this picture!

Avery had her best blood gases ever yesterday, and again today, which is great news.  Today, however, there were several other things in the nurses report that made us worry.  We know these ups and downs are to be expected in the NICU, yet it doesn’t make it any easier.  Step forward one, step back two.  Step forward two, step back one.   It was predicted by all that this back and forth is just the way it is…   we shouldn’t be surprised by it ever…  AND…. it’s still crushing.

I’m realizing the emotional and physical toll that this is taking on us.  The last few days in particular have been really tough for me (mom) to show up the way I want to in the world, to the point where I can barely figure out how to get my bearings on what day or time it is.  I am struggling with finding peace in this reality, communicating effectively, being the friend I’d like to be for my dearest friends who are hurting this week too, knowing how to actually connect to my dear husband without making him think I’ve lost my mind, or even how to nurture our soulful dog.  As any parent likely knows, perhaps the hardest part about having a hard day personally is that on top of your own pain, you then feel guilty about having a hard day when your little one is having an even harder day and those around you are hurting too.  More emotions.   How does my body even produce this many tears?

I know the rawness will someday fade and I am so grateful for the personal and touching emails I have been receiving from other moms who deeply (and so unfortunately) understand how hard it is to grieve the loss of so much, while still being strong for the miracle of the twin who fights on (and still be a good wife, friend, family member, employee, step-mother, neighbor, etc).   I am so appreciative to those of you who are reaching out to us in a multitude of ways.  I regret that we can’t promptly respond to all, but I know those of you that write or call don’t expect that we communicate until we’re able or have the energy.  Please know that we do appreciate every message.

Many of you have shared how much you appreciate that we are sharing our story so openly and unfiltered, and that it’s helping you tremendously by our doing so.  Thank you for telling us.  Perhaps that’s another thing that comes with this level of pain….a lack of a decent filter and a whole new perspective on what matters most.  Perhaps I’ll change my mind someday, but as I sit here bleary eyed and type this, my current view is that if being totally honest and open and revealing my vulnerability can help someone (or be good therapy for me – which it is) then so be it…

Yesterday, as I walked into the hospital to visit Avery, I saw lots of beautiful children, several sets of twins, one stroller with triplets, and happy parents wearing smiles and name tags exiting the building.   I felt it without knowing…. it was the NICU annual reunion.  It was the day each year that results in one of those beautiful photo collages on the walls of the halls to the NICU that we have come to know all the faces on.  The same collages that each time I walk by them, I consciously visualize us being there each year of Avery’s long and wonderful life.

I dropped to sit on the curb and just take it all in.  I breathed deeply and soaked in the energy and hope pouring from those double doors back out into the world.   I visualized Quin, Maddie, Avery, and I being there next year, and the next year, and the next year.  I visualized Avery giving her doctors and nurses huge hugs and telling them, “Thank you for taking care of me!” and, “Thank you for believing in me!”

As they passed, I asked one mother who came out with her daughter if it was, in fact, the NICU reunion.  She confirmed what I already knew in my heart.   I then asked if they had enjoyed the party and asked if they had been able to see her nurses and doctors.  As we spoke longer, I shared with her that one of my daughters was in the NICU.  She replied that she lost her now 5-year old daughter’s twin sister in the NICU 5 years ago.    She continued, “You never get over it…   and some times it’s really tough….but it’s also worth it.”    Her red-haired, bright eyed 5-yr old daughter chimed in, “Yes, it’s worth it!” as she finished shoving her last bite of yellow cake into her perfect little happy body.   I closed my eyes and visualized Avery saying the same thing before anyone believes it’s even possible for her to talk.   It was not lost on me that God had me “meet” a woman who would share this particular story and knew so intimately what was heavy on my heart.

Avery has reached 2.7 lbs and, although we’re all having ups and downs, Avery is an amazing little miracle and we are all marching on.  We have so much hope for her full recovery and for her attendance and inspiring stories at the 2011 NICU reunion for those who “graduated” in 2010!

Dad got to hold her today, and as long as lil’miss Avery cooperates, he’ll also get to hold her again tomorrow on his birthday (8-31).   I have a feeling that this is one year we will all know what he’s wishing for as he blows out his candle.

Quin holding Avery on 8-30. She LOVED it!

Thank you all for continuing to lift our family up with your prayers.

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12 Responses to Emotional Days

  1. Reed Engdahl says:

    God Bless you all. God will never give you more to bear than you can handle. So happy for Avery continuing to get stronger and stronger. Absolutely beautiful pictures. Visualize the reunion many years from now. You will all be there.

  2. Sarah and Joaquin says:

    Avery is so adorable! She looks like she is getting so big! Does she have red hair? It looks a little bit red in some of the pictures (like Aunt Sarah’s??). Quintin, the picture of you holding her is so beautiful. Happy Birthday Q!! We love you all. Hang in there.

  3. Sharon says:

    Robin –

    You are an amazing woman – this I’ve known since before you were a wife or a mother or an executive….when I texted you a few days ago to say “we will all get through this one day at a time” your response to me was “you’re damn right we will!” As I read that I was completely in awe of your ability to see that I was in need of encouragement in that moment, too. Thank you for the gift of your friendship. I am inspired by your grace, vulnerability and strength. If anyone asks me if Avery is doing OK…my response will always be “you’re damn right she is!” She’s just like her mom and dad – a fighter, a warrior, a leader – a beautiful gift from God, sent here to teach us all how deeply we love our friends, our families and our connection with Him….I love you so very much!


  4. Nicole Malachowski says:

    Look how alert Avery is in that picture! What a beautiful baby you all have. It’s as if she’s saying, ‘it’s OK mom and dad, we will be all right. I’ve got this one day at a time.’ before you know it, that NICU reunion will be here…and you will become a source of inspiration for a family you ‘bump’ into. The Lord most certainly has a plan.

    Robin–you are an amazing woman. Everything you have written, all the emotions you feel, are OK. You are allowed them, they are expected, your friends and family are there to support you. So are perfect strangers. For those of us who’ve experienced the NICU, know we certainly believe in you. Please do this…feel no guilt, whatsoever, mourning the loss of the pregnancy/birth experience you had dreamed of. You have to grieve the loss of that experience, as only a mother can. Yes, you deserved the full experience, and I am so sorry you didn’t get it. You have gained a love for your twins that only you and Quintin know. That is so special. Everything Avery does, everything, is because you love her. I suspect that is an experience far greater, a love far deeper, than you ever dreamed. What a blessing to truly understand what a miracle Avery is…God bless you all.

    P.S. I hope Quintin’s birthday wishes come true ten times over!

  5. Robin,

    I just wanted to let you know that we are thinking about you and praying for Avery.

    Mary Beth

  6. Lisa Graves says:

    Oh sweet little Avery, what a gorgeous precious little girl you are! Robin and Quintin, thank you for sharing your story as it unfolds so openly. You are reminding me to keep life in perspective. You are in my thoughts and prayers daily. with love, Lisa

  7. Diane Sheridan says:

    Robin, 5 years from now that will be you at the NICU reunion with your little red haired girl, I can just feel it. I’m not surprised that Avery is so alert, she must take after her cousin Brooke (afraid she will miss something if she closes her eyes). Hope Quin had a great birthday today holding that sweet little girl in his arms had to be the best present ever. Sharing your story is a great form of therapy for you, and please don’t feel guilty when you are having a bad day it goes with the territory. The tears you shed are a way to release some of the stress and tension so when you sing Jesus Loves Me to Avery Rose it’s with ease and love. The love that you and Quin share with each other, your daughters and your dog are obvious in every entry in the blog, hang in there knowing that if there is only one set of footprints in the sand Jesus doesn’t mind carrying you for a while. Love you all!

  8. Maggie Nick says:

    Praying for you guys all the time. So proud of Avery and her strength. Hang in there.

  9. Shirley says:

    You are so right about your website helping others. Your willingness to share your deepest, darkest fears and also your love and faith goes beyond helping those in similar situations and speaks to each of us in our “normal” condition. How I can appreciate my son’s dirty laundry on the floor is something new for me. Rather than irritation, I feel blessed that he is healthy. I feel blessed that I can forget about him for minutes and hours at a time and he comes home like there has been no gap. These simple things that I have often taken for granted in the past have now become something else, as I read your words and feel your pain. I am praying for all of you every day, and after my mind is elsewhere, I come back to the thought that “Robin isn’t doing this today” and it tears me that I can have such a good day and not be able to do anything for you. My only thoughts are how blessed I am and how especially blessed I am to have you, this amazing woman, as a friend. I am sending you hugs and wishes for peaceful thoughts and precious moments.

  10. So glad you have been able to hold her! I’m sure you cherish every moment she is in your arms.

    You talk about needing to be a good wife, friend, family member, employee, step-mother, neighbor, etc right now. You don’t. You are clearly an amazing, compassionate woman – I don’t know you well, but that shines through each of our conversations, and every post you make. But, I’m here to tell you to give yourself a break. You are going through a tramatic experience, still grieving Sienna, and focusing all your positive energy towards Avery. That is enough. Concentrate on you, Quinn, your step daughter and your daughters right now. Let you other family, friends, neighbors, employers, etc hold YOU up right now. They will. They want to.

    You can’t do it all, and there will be a time in the future where you can do the same for them again. If there is a time to take care of yourself, it is now. Be kind to yourself.
    Huge ((HUGS)) to you.

  11. Quin and Robin,

    Avery looks so good and is definitely growing, I’m so proud that she’s continuing to gain strength. Continuing to pray for you all, God Bless!

  12. Cherie says:

    Avery is sooo adorable. She keeps getting bigger!! I think about you all constantly & wish I were closer but … I would be a hog wanting to hold Avery all the time (grin). Love heals & together at the NICU, you all heal eachother with love. So powerful!

    p.s. I called Fedex for an overnight delivery. They were confused when I told them there was no physical package. Sending bundles of
    healing love on the ‘fairy express’. xoxo

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