Hope

Hi!  It feels like the holidays kind of chewed us up and then spit us back out.  Ha.  Not exactly all candy canes and icicle lights, but just some gritty grief truth.  We all struggled to catch that joyous momentum and we’re pretty glad to see the holidays in our rear view mirror.  I struggled to put words to my feelings so I just stayed away.  Things are settling back down and I’m hoping to play catch up in this space.

In late November sweet Leo had another heart procedure to check out his special little heart and for his team to gain some more wisdom and knowledge on the best way to go about repairing his heart.  We were so hopeful his team would report some amazing new findings which would buy us even more time with our boy before having to send him in for surgery.  His procedure ended much sooner than expected which was a red flag for us and it turned out the work they had done before had not yielded the outcomes they were hoping for so now surgery is on the horizon.

We are disappointed and I felt all vomity in the moment about it all, but then Leo caught RSV, pneumonia and bronchiolitis which got him another visit to the ER right after they let him go home.  All the funk, despite being a bit scary, actually bought us a little more time because he has now proven his body will likely catch other wintery germs so they do not want to attempt his surgery during the winter months.  And we’ll take it.

He healed up and is now on the mend.  We spent the holidays soaking up our first Christmas as a family of 9 and Leo did not disappoint in the excitement department.  We watched our kids in awe, but noticed Everett’s absence at every turn.  It was hard and sad mixed with deep gratefulness.  I whispered in Leo’s ear over and over again, “I’m so glad you are here.”

So surgery is on the horizon and we’ll take every single day before the actual day comes.  I have 1 million feelings about it all and I’m still trying to sift through all my feelings in all the departments including the Jesus one.  It’s easy to look at someone’s story and heave words towards it.  It’s harder to look at someone’s story and just listen and be okay with them not being okay right now.  People who are grieving don’t need to be fixed, they simply need to be loved.  I’m learning more and more about what type of person I want and long to be to others who are suffering.  I’m tucking all the lessons pain and loss are teaching me within my own heart.

The day they released Leo from the hospital after his heart procedure I shared these words on Instagram:

“After a good night with no complications Leo is back at home.  Walking out of that hospital this morning with him in my arms was tear inducing…always will be.  All morning I’ve thought of Amanda and Meredith and sweet Toby and all the others who are fighting so hard along side their babes.  I thought about those who have walked out doors empty handed and I, of course, thought of Everett. 🌈❤️  We do not emerge from ashes unscathed, but deeply scarred.  What we do with our pain and brokenness is important and honestly I hope I never fully lose mine.  It creates compassion and empathy and love where it might not have been otherwise.  It reminds me daily that suffering is real and everywhere and one of the single greatest things I can do as a human is not to run away, but to simply show up the best way I know how and acknowledge others’ pain.  I want to remember my pain, tuck it away deep and learn from all that it has to teach me.”

And although I’d go back in time in an instant to be with Everett again and although I’d give just about anything to see his face, feel the weight of his body against mine and kiss his sweet cheeks again I stand by my words.  I stand by never taking for granted entering a hospital with my kid and walking out with them in my arms.  I stand by taking something from this whole suck ass situation.  We will hold onto hope as if our lives depend on it because it feels as if they really do.  You will find me white knuckling hope with all I’ve got because hope is real and it keeps us afloat.

 PS:  Toby is doing really well…still a long way to go, but the dude is killing it. 🙂

10 Comments

  1. I love your honest heart, Laura. I’ve been following you since I first heard of your mom’s passing, and felt such comfort from you as I walked through the grief of losing my mom. I pray for you and your family with each post…I can’t imagine your grief over losing Everett. I’ll keep praying for Leo, and for you, as you navigate this whole suck ass thing. All my love

  2. Petra Engle says:

    My Papa died in October. Alzheimer’s and cancer. I had been his 24/7 person for the last few years since I graduated. Put my planned life on hold sort of (it was an honor) to take care of him when he needed me. I felt like we were in a bubble together and then it just shattered. This is the first time I have wanted so badly for the holidays to just go away. My mental health has been dangerously bad lately. White knuckling hope as well. Hope hope hope. Love your words. Thank you.

  3. ❤️

  4. BarB cole says:

    You ARE LOVED AND RESPECTED. Your honest emotions and words help us know how to response to you and other hurting loved ones. You were thought of often and prayed for as well. Everett was missed. I put a rainbow match car on our Christmas tree with his name on it. He will always be remembered. So glad Leo is doing better. Praying hard!!!!

  5. Thank-you for being real. I love the honesty and vulnerability you share. I am thankful for following your journey and family (even if it’s only through social media and a country away) and the many things I’ve learned through you.

  6. Debra Cope says:

    Your honesty takes my breath away. As one heart mama to another, I understand what anxiety accompanies our children’s diagnosis and treatment. (And my child “only” has ToF, one of the better-understood major defects.)

    Happy new year to you and your gutsy family. Here is to a new beginning in 2019 for brave Leo’s heart and sweet relief for all of you.

  7. “People who are grieving don’t need to be fixed, they simply need to be loved.” Amen.

  8. Polly Holt says:

    I have suffered a different type of grief. The grief of loving an addicted child is they are standing in front of you but not there. It goes on for years but I wouldn’t give up the suffering because God is always so close. And my Compassion and empathy for others increases.

  9. Came here from Meredith’s instagram which I don’t do but found through
    Ann Voskamp’s blog I think. I love blogs. I love to listen to real people. A teacher friend at school just lost their 19th month old. Born with an upside down and backward heart. He went in the hospital in May and never got to come home. He died just before Christmas. Got to school today to learn that his sixty year old father died last night, complications of diabetes. My Mom died Nov. 16 and I lost two cousins over Christmas. I just don’t even know any words at all to say to all these people and myself and you, so much hurting. I did hear a scripture Sunday that I don’t know how I missed. Colossians 1: 17 He is before all things, and in him all things hold together. Hmm. So I guess it said to me that He gets wherever I’m headed before me and when I have to get there, this hard, questioning, unrelenting place, He holds me together. Yes, please do. Faith and hope. With one adopted grandchild and one lost back to the system after 18 months, I just love seeing your family. While I hate it for your loss and pain, I love all the beautiful smiles. I love that your precious boy knew such love.

  10. I am so grateful to have come across your account and count myself blessed to be able to learn so much from your honesty. Thank you so much. ❤️❤️❤️❤️❤️ All of the love and hope and prayers from our heart family to yours.

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