Just enough light for the step I’m on…

Quin and I, and our entire family, are in such gratitude for the blessing of time, love, and humbleness we have felt in Sienna’s short life.  From her innocent, loving, and peaceful eyes, to the outpouring of love, generosity and blessings from friends, family, and total strangers…. the canvas of pain and anguish is painted with glorious colors and I’m experiencing a depth of emotions that I have never known.

As I’ve continually sought some sort of “message” from God about this astoundingly surreal process, the only words that have come are, “Trust….and I will show you the way.”   So those words echo in my heart and mind every second of every day.  And I face each moment with just enough light for the step I’m on (thank you for sharing this with us, Sharolyn).

Avery Rose continues her strong fight and her vitals are holding strong.   Last night while we visited, she was asleep soundly on her belly in a little pink hat, and grasped her Daddy’s finger strongly with her right hand.   Every time he started to pull it away, she would only hold on tighter.   Her perserverance and continued signs of immense courage and strength allowed me to smile last night as I watched her gripping her Dad’s finger, as if to comfort us both.   Although she has yet to open her eyes, she has long blonde eyelashes that melt your heart.  Despite the surroundings, I only see beauty, purpose, and potential when looking at her.

Avery holding Daddy's finger tightly.

We understand that there is still a very long journey for her to be able to travel out of the NICU, and much about her future is unknown.  From world-renowed specialists, we’ve heard the words, “we really have no way of knowing her future…”   However, as her parents, our instincts tell us that she can be a success story, that she can be one of the children who defy the odds, and one of those amazing vibrant children that were given harsh diagnoses at early ages, that we’ve heard so many positive stories about from kind people over the last few weeks.

As long as she shows us that she wants to fight on… and God’s will allows her to stay with us….we will warrior on, find the strength to visit and comfort her for countless hours, and believe in her every second.  We humbly ask for your continued prayers for her strength in every moment, for wisdom and commitment for those that care for her, and peace and strength for our family.

Each and every one of you that have found your way to this site are cherished and very important to this story.   Trust that you have been brought to these words for a reason and allow our vunerability and the very raw sharing of our story to open your heart to deeper love.  May it help you to notice the sacred in the ordinary, to see your own children in a new light, to deepen your faith and strengthen your family, and to look for our angel Sienna’s “artwork in the sky.”

Just Enough Light for the Step I’m On (written by Stormie Omartian)

Sometimes only the step I’m on,

or the very next one ahead,

is all that is illuminated for me,

God gives just the amount of light I need

for the exact moment I need it.

At those times I walk in surrender to faith,

unable to see the future

and not fully comprehending the past.

And because it is God who has given me

what light I have,

I know I must reject the fear and

doubt that threaten to overtake me.

I must determine to be content where

I am, and allow God to get me where I

need to go.

I walk forward,

one step at a time,

fully trusting that

the light God sheds

is absolutely sufficient.

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12 Responses to Just enough light for the step I’m on…

  1. Jen Klima says:

    Robin – the words you wrote are so beautiful… I have never doubted your strength and commitment but you continue to amaze me. You are such an inspiration… thank you.

  2. Lindsey Corbin says:

    Robin and Quin,

    You don’t know me, I am a friend of Robin’s cousin Keith’s wife Julie. I have been following your story now as Julie has kept us all updated on Facebook. You two are truly amazing, and while I cannot imagine what you are going through, I can let you know that you have more people that you ever realize hoping and praying for you. Every day I come to this site to look for an update. I pray that Miss Avery will pull through and I know that Sienna will help her from heaven. Trust in your faith and the faith of those around you. Miracles happen every single day and your little girl is no exception to that rule. Not to mention, she now has a permanent angel to guide her progress! Stay strong and know He is carrying you through and will ensure your success on the other side.

    Lindsey in California!

  3. Susan Mcmurray says:

    Beautiful words. You continue to amaze me. Bless little Avery in her fight. She is one tough kid. You are an amazingly strong family, and your love for one another will get you through this. Bless you all.

    Much love from CA.

  4. Angel Roggenkamp says:

    I am so happy Avery made you smile. It made me smile. I love the picture. Thank you God for giving Avery the strength to fight on. I love the poem as well

  5. Mike says:

    I still pray hard for you and your entire family! I know oh so well, the feeling of having the extra grip as you try and pull your finger away. It’s come to my attention that it’s their little way of saying, I’ll be just fine. Avery has her own personal guardian Angel and that is indeed a blessing! It is important for you two to remain strong for Avery and know that it will be beneficial for you all. I get complimented all the time on my strength but it is nothing compared to the amount of strength you both have and that makes me proud of you two. God Bless!

  6. Debbie Dye says:

    So sorry that your little angel Sienna has passed on. I have been reading your precious updates daily on the girls. Your family,doctors and nurses and little Avery have been in my prayers. May God give you strenth and comfort.

  7. Gina Baker says:

    Robin,

    As I have been following your story I have been at a loss for any possible words to express my feelings for you, Quinn, Avery, and Sienna. As I read the posts I know that you are comforted by many friends and family that love and support you in all ways possible. Please know that you are also in my every thought and my every prayer. I hope you continue to find strength in those that surround you and know that you are all loved very much.

  8. Becky Watson says:

    I pray that you will continue to feel God’s loving arms wrapped comfortingly around you.

  9. Cindy Robinson Templeman says:

    I continue to pray for you all everyday….I simply cannot imagine what you are going through….the strength that both you and your husband have shown is amazing to me….you have been on my mind and heart so much even from the time mom told me you were pregnant….I rejoice in knowing that Avery will forever have an angel by her side…..I will pray for you all….that God will continue to give you the strength that you need to get through the days ahead….and thank you for sharing your journey with us all….love, Cindy

  10. Elizabeth (McKinley) Boyle says:

    Thinking of your sweet family tonight…wishing you peace during this incredibly difficult journey. Miss Avery will surely have someone incredibly special always beside her to help guide her through an an amazingly beautiful life.

  11. Lu Ann Roberts says:

    Robin,
    My thoughts and prayers are with Baby Avery and all the family. I pray that she continues to grow stronger each day. I will continue to read the updates on her daily to see how she is improving. Judy kept me posted as any news came in and then she give me the website. What a touching story..

    May God Bless and watch over each of you.

    Lu Ann Roberts

  12. Kyrsten says:

    Beautiful poem, thanks for sharing!

    Remember, “As your days, so shall your strength be.” Deuteronomy 33:25.

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