I was reading someone's blog today...another mother who lost her special needs child. She writes about all the unrecognized lasts. All those everyday moments in the time I now think of as "before". I think alot about those moments too as I look back and wonder...if I had only known...
Spending that last week at the lake and not in a hospital room...what a blessing that was. Our last holiday together. We have many precious memories to treasure from those days.
Sunday...just finally being home for the first time in weeks...our last day at home as a family of five. Watching Baby Einstein...napping on Daddy's chest for the last time. Part of me wishes I had known. I would have spent less time doing laundry, preparing to go into hospital, and more time with Noah....grabbed a few more hugs...soaked up a few more smiles...gathered up a few more giggles to store away for today.
Sunday evening...hooking up Noah's TPN, going through our complicated evening routine, and tucking Noah in his crib...the last night we would fall asleep listening to his concentrator...the last night we would share a room with Noah.
Monday morning...dressing Noah in the last sleeper ever wore...settling him in his car seat for his last car ride as we made our way to the ER for the very last time. And later that morning, watching him take his last breaths on his own...hearing him cry for the last time, before he was intubated and the machine took over.
Tuesday morning...Noah wakes up, fighting to pull out his breathing tube. We all frantically race to sedate him again...the last time he looked at me...the last time I saw his eyes.
Wednesday...the frantic action of the end drawing near...a million machines...making that final decision for Noah...
Letting him go...
Then the sudden stillness and silence.
Holding Noah for the last time...and finally, forcing ourselves to let go of his body and walk out of PICU for the last time...without Noah...now a family of four...and the beginning of many painful firsts.
Those moments are so vivid...seared into my memory. Lasts that are only recognizable in the "after".
On September 21/05 we were blessed with a beautiful son. Born with a chromosome 12q deletion (q15q21.2), the challenges were many...cleft lip/palate, complex feeding issues, developmental delays, failure to thrive, multiple infections, blood clots, asthma, sleep apnea, GI and pulmonary bleeds, TPN dependency and kidney issues. Noah embraced life and taught us how to love. On July 29/09, Noah's journey ended, leaving us on a new journey...this journey on the pathway of grief...
About Me
- Nichole
- I am mom to 3 beautiful children. I also work casual as a nurse. Our life is a crazy one, and nothing like we ever expected it would be. Yet, this journey has changed me and the way I view others. And it has helped us slow down and enjoy the most precious things in life. I wouldn't trade those lessons for anything.
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28 comments:
Weeping with you...praying for you...and loving you...
Nichole, I cannot presume to know your pain. Still, I can feel God's hand guiding you to share that pain with us, so that we can understand it better, and through that understanding, be steadfast in our support.
Praying for you,
Alison
Being at the cabin this weekend, walking by the playground, seeing the swing and the slide that Noah loved. Watching him sitting in his stroller, with the wind blowing in his face, I remember whispering,"Thank you Jesus, for this marvelous gift, you have given him" Holding you in prayer. Jesus says,"Do not be afraid, for I am with you. Do not be afraid for I AM" love mom
Still praying for you and thinking about you and Brad and the kids every day.
Myrna Dyck
This is so sad. Sad for those of us who read it - and yet, for you, this sadness fills every moment. Love you and praying for you.
Still praying for you Nichole. Its such a wake up call for ALL of us. Those of us not blessed with a special needs child...every day COULD be our last as we know it. Its good for me to refocus and realize...what would I have done differently if it were my last?
Hugs to you.
Janice
Nichole, i grieve for you. I pray for you. I think of you and your family often. you are a wonderful mother. I often think myself "what if", it is hard not to when you have young children. Just know that you are an inspiration to many and a phenomenal person. If you ever doubt that, don't. You did a fantastic job caring and loving Noah, and he felt everyday and continues to feel it.
Be well,
Lisa :)
crying with you....praying always
Nichole,
I weep as I read your words & pray that you would find strength for each moment & each day from our loving Father up above.
Val Penner
Your words touched me today. I cried and I thank you so much for sharing. I think of your family often and I ache, as I wonder at the emptyness you encounter with Noah gone. The funeral was beautiful and the slideshows were a wonderful tribute to a beautiful, joy-filled boy.
I know it maybe doesn't matter what an inspiration you are, how brae you seem to us. You just want your boy back...
I can't even imagine your pain and I am so so so sorry you know it all to well. Lots of hugs and prayers!!!!!
have been following your blog last few months. Sorry to hear Noah's passing and take good care of yourself and family too.
my tears flow for you.
crying with you. praying for you
Continuing to pray for you all! Nichole, I can't begin to say that I understand your pain because I dont. I do that God is watching over you all.
God bless you all!
~Rissa
-Thanks for continuing to share Noah's memories with us.
Even though you knew the journey you were on, you still chose to hold Noah's hand and walk him home to Jesus...knowing just when to let go. Praying for continued comfort in God's presence for you all.
My heart aches for your family!
Aching for you and still keeping all of you in our prayers.
Crying with you and keep you close in my prayers! Thank you so much for continually sharing Noah with all of us!
Beth
Thank you so much for continuing to blog. As you share your journey of grief with us, it helps us to understand a little bit of your pain. God weeps alongside you and your family. You have walked an amazing journey with Noah, and though the memories are bittersweet, I am sure you would do it all over again. You are a woman of courage. You continue to inspire me, as well as many others. May God hold you in the palm of his hand, and walk with you and your family, one day, one hour, one minute, one second at a time.
Even though we have never met my heart hurts for you still......I pray for comfort for all 4 of you.....
My heart breaks for you and your family on the dear loss of your precious Noah. May someday your memories bring smiles to your faces rather than a tear to your eye......you are an inspiration to so many.
My prayer has been that God's spirit will sweep through your home, touching all those unspoken needs for each one of you, and filling you when your cup feels empty.
Love & prayers, Cheryl
I just wanted you guys to know that I am still praying for you. Every single day.
Hang in there.
Nichole..I was very touched by your words this evening. Don't have a clue as to what you are going through, but I am praying for you. We never know when are lasts days will be....it was a reminder for me, as well...what a beautiful writer you are...
April
Oh Nichole,
I am so sorry. I continue to pray for your family constantly and every morning when Danny and I go off to our separate jobs I remind him to pray for Noah's family too. His response is always that "he already is".
Sending you more love...
That was heartbreaking, I'm truly sorry for your family's loss. Saying prayers for you.
Hi sweet lady,
Just wanted you to know that I'm thinking of you today. May God continue to bless you all.
Love you honey!
~Rissa
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