The red and blue lights silently bounced through the room, and the beeping alarms were a constant reminder of just how critical she was. The saturation levels flashed nonstop, tempting us into a pit of despair.
Whenever we go back to a hospital room and I hear those beeping noises, I always think back to those days. That, and the smell of that green hospital soap.
By this time we had placed the MP3 player inside her incubator to hopefully silence some of the racket going on in that depressing place.
I pecked away at my HP laptop which rested on one of the mobile NICU nurse desk stations and Pete was wrapped up in one of the Left Behind series books. He read through them quickly those days. I was convinced it was possible to find a miracle cure like the dad on Lorenzo’s Oil did, so I steered clear of negative stories and did TONS of research.
The doctors came in a flurry, dripping with frustration. They always had important papers in their hands, that had almost no words on them, just charts. As they spoke they pointed at the chart. “We are going to have to try Y medication, because the X meds are just not having the affect we hoped they would have.” The distance they maintained from being emotionally attached to such a small life always amazed me. I don’t blame them at all, but I honestly don’t know how they did/ do their job.
“Okay… where do we go from here?” almost without hesitation Pete and I were ready for the next thing to try to get her well.
We could tell by the looks on their faces (though we never verbalized it) that the list of ‘things to try’ was getting shorter and shorter.
I can’t remember what medicine they suggested to try next but I learned a lesson that day.
“We can try this new medication, but you must know that there is a chance she will suffer brain damage… permanent scarred tissue in her lungs… blindness…”
The list literally went on.
By this time we had heard this speech about 3 times. “This one has a side effect too?” How much more could we risk?
“Every medication has a side effect.” the doctors were almost surprised at my ignorance. “Every single one.”
They say healing takes time. And in most cases it does. You know – with a scraped knee, a c-section scar, or even a lung transplant.
But often healing becomes confused with having no pain at all, and no side effects anymore. Healing is not erasing what happened, but rather learning to LIVE with it.
Healing in and of itself is a pure indicator that something devastating has happened. Something painful, maybe even life-threatening.
Healing – with time – becomes possible, but always always leaves a scar.
On the first flight home from Blissdom (yes, I had an ah-maaazing time!) I don’t know why but tears began fall. Even after the conference, and meeting some seriously inspiring women… I still want my Plan A.
Plan B is not and never will be my first choice.
I want my little girl. I don’t want pity, or tears. I don’t even care if other people remember her anymore. Because too many times I’ve been disappointed by my expectations of others. I just want her.
Knowing that plan A is impossible, I rest in hope today. Hope that her story is breaking down this taboo, and shortening the gap between child loss and support. One in four pregnancies end in a loss – whether it is early on or shortly after birth. My hope is that her story, our blog – is making a small ripple effect to reach out to someone today.
I am going to make the most of my Plan B.
“Knowing that plan A is impossible, I rest in hope today.” Amen!! for me, all day, every day!
You are a fantastic writer!!
You are such a beautiful, inspiring woman and you my dear are making more than a ripple in the world around you! You give other women experiencing life after the loss of a baby hope, hope that as you so poignantly put it they can learn to live again. I also posted this week about healing and how I now understand God’s grace in a way I never did before losing Lily. So glad you had a blessed time at Blissdom and can’t wait to hear all about it!
Rebecca recently posted..Grace filled unexpected life…
Thank you so so much Rebecca. xoxo
Franchesca recently posted..After Blissdom
I am so sorry your Plan A didn’t turn out how it should have. It’s heartbreaking.
Small ripple effect? Your Jenna Belle has caused a huge wave! SO many people have been helped by your knowledge, strength, compassion and art.
Thank you for all that you have done and will continue to do. Your Plan B, while not what you wished for nor expected, is pretty darn fabulous. You are making Jenna proud.
x <3 o
Thank you for writing this. I don’t know why — I’m not sure it’s even hopeful. But I love it. Thank you.
I especially love this: “…Too many times I’ve been disappointed by my expectations of others. ” That’s where I am right now — feeling completely let down by pretty much everyone. I feel so alone. I wish I could go live in a little town with just BLMs for a while.
I hope that you find some good things at Blissdom! And I especially hope you have lots of opportunities to share Jenna’s story.
Beth recently posted..{Sad Hope Songs} “Beauty Will Rise” by Steven Curtis Chapman
Thank you Beth, there were definitely so many opportunities to share our sweet girl and it was so well received. Still so thankful I got to go. xxxx
Franchesca, I feel so honored to have been able to read this post and get a glimpse inside your heart. Wish we could have had more time to chat at Blissdom but reading this I feel I know you more already. Thank you for bravely sharing your story. You are a beautiful writer. I look forward to reading more.
Thank you so much Jessica!!! I am SO glad I met you and so glad we can keep in touch online :) xxxx
It’s amazing when your read someone else’s post and it feels like the words came out of your mouth. I still have a hard time completely accepting that Plan A is gone. And where I am in my healing right now most of the time I just think “I want my my little girl.” And sometimes I even think about the things in my life that I would give up to have her back. Thanks for sharing your thoughts. It helps us know that our thoughts aren’t crazy.
Big hugs to you Kim! I wish accepting this Plan B was a one time thing sometimes! I constantly go back and forth, but just trying to make the most of it. xoxo
How beautiful! Your words truly touched me, as my husband and I begin to heal and live with the loss of our boys. I know exactly how you feel when you say you just want your daughter back. I have found myself saying those words so many times. I can also identify with being let down by expectations of others, part of this new life. Your ripples ARE far reaching. I found your site during a particularly hard time…you and others in the baby loss community saved me and renewed my hope for living. Thank you!
Big hugs to you Anne, I am so sorry for your losses. Thank you for your encouraging words!! xxxx
Oh my sweet friend. Yes.
Stephanie recently posted..Guest Post ~ Anne’s Story
Oh, I couldn’t control the tears in a couple sessions this weekend. This was beautiful.
Steph
Adventures In Babywearing recently posted..In my notes
Oh my word! Totally agree, the sessions were big tear-jerkers. So amazing!!!
This is beautiful. The words. The emotion. The love for your Jenna Bella. I feel like I was right there with you – you made me shed a few tears tonight as well. THIS struck a chord with me: “Healing – with time – becomes possible, but always always leaves a scar.” So very true. xo.
Beryl recently posted..your camera is not a handicap
Big hugs to you sweet friend!! xo
Franchesca,
You are one of the truly inspiring women I met at Blissdom. My heart aches for you that Plan A didn’t happen. I’m in awe of how you’re doing so much to help others with Plan B. Not the road you would have chosen, but offering hope to so many along the rocky path.
Shannon @nwaMotherlode recently posted..Giveaway: Tickets to Peking Acrobats at Walton Arts Center
Thank you so so much Shannon!! It was my pleasure meeting you, and getting to know what you and Gwen are doing! :) So glad we can keep in contact online!! xxxx
Wow. Thank you for sharing this and for the legacy your daughter has left — I can see it in your words. Keep writing. Keep hoping.
Jeff Goins recently posted..How to Fall Back in Love with Writing
Thank you, truly. I am so glad I had the chance to sit in our your session.
Beautiful words… thank you for sharing your heart. You are making a difference and together we are all bridging a gap we so need on this journey of Plan B’s! Love and hugs! Lori
Thank you Lori, yes together we are doing this! :) xoxo
Beautifully written!
Crystal Stephens recently posted..7 Months
So beautiful, Franchesca, this post really hit home for me. I still find myself thinking and wishing for plan A often lately. Just this weekend I was sorting childhood belongings at my mom’s, and found a Christmas ornament I had received years ago that featured a family just like mine would look with Eliana in it, it brought me to tears. That longing will never leave us, but the amazing way you are living out your plan B is touching so many, it is just incredible to see you shining your light, Jenna’s light, and offering hope to so, so many broken hearts. XOXO
big hugs to you Jess. It amazes me that the longing doesn’t even fade over time. I wouldn’t want it to either, it’s just so amazing to me. Thinking of you and your sweet Eliana today friend. xoxo
This is really… inspiring. You know why. I really can’t say much more. Again, you took the words out of my mouth.
And oh god the soaps. Every time I go to the doctors or the hospital, I notice the soap bottles. The smell. It makes me almost nauseous now. I’m so used to the smell of the soap/sanitizer. And on tv or in pictures, I keep seeing those damn baby blankets. The white ones with the red strip and blue on it. Who knew everyone used the same blankets. Ugh. *hugs*
Stephine recently posted..We have kittens… SEVEN of them!
Oh yes- those baby blankets. Good grief, everything just brings back those moments that should have been the best times of our lives- meeting our babies for the first time. Sending you so many hugs!!!
I am new here, but was taken in by your words. Your writing is beautiful. I’m so sorry for your loss. It is definitely something no one can be prepared for, particularly when it is a child. It’s ok to mourn. Hugs to you!
Your writing is beautiful :) Thinking about you! <3