That date engraved in granite, forever branded as sacred. Silent recollection of the excruciating, raw reality we faced six years ago as she took her last breath. Remembering how we cradled her sweet body the whole night through. And then how the sun had the audacity to rise through the hospital window that morning. Nora. Sweet, sweet Nora. What an absolute gift she was – on loan for only a short time. She sure made good use of her time here, beckoning multitudes to see the world in a better, kinder way. Incompatible with life. “Pfffff!!! I’ll show dem!!!” she exclaimed, “Don’t try n’ slap dat label on me!”

My heart it aches. My empty arms yearn to cradle the sweetest 26 lbs that ever were. Even so, today outwardly looked just like any other day. I’m not a big planner or coordinator. And REALLY – – what are you “supposed” to do on days such as these anyway. Sitting around being sad seemed counterproductive, so I did do something in Nora’s memory to bless someone else, as suggested by a friend. I put together a new back pack full of essential items – socks, t-shirts, a hat, a toothbrush & toothpaste, snack bars, protein drinks, water, food items and a nice wallet with some cash in it. I headed down to 13th and Main, amidst the boarded up storefronts, and sat there in my car until I saw Mike making his way toward me. Mike is a homeless African American man we met while talking and wrapping things up out in Old St. Mary’s church parking lot. I told him yesterday that I didn’t have any cash on me (which was true), but I told him I’d be back tomorrow with something for him (which probably sounded like another empty promise). But I came back, as I promised him I would and I blessed him. We talked for awhile. He told me about his time in prison serving a 3 year sentence. He told me how his mom died recently and how sad he is. She was all he had. “I know the pain of grief, my friend, and I’m sorry.” It was a meaningful exchange. I hope I made some sort of difference for him, even if just for today. I know I can’t single-handedly make everything “all better” with one random act of kindness, but at least it was SOMETHING that demonstrated love. Love. That’s what Nora was all about. She gave and received inordinate, copious amounts of love, and THAT IS WHAT MATTERS. LOVE.

“And now these three remain: faith, hope and love. But the greatest of these is love.” (1 Corinthians 13:13 NIV)

(As stated on Nora’s headstone)

I received a text a few weeks ago from a dear friend inviting William and I out to dinner with her and her husband. I was excited at the prospect. Heather is one of those people who I wish I saw more regularly – that I wasn’t so consumed by the busyness and chaos of day to day life. Of course this is a feeble excuse, and a pronounced reminder to be more intentional. We met for dinner and drinks a few days later. As usual, it was great to see Heather and Brian. We always seem to be able to pick up right where we left off without skipping a beat. We got each other back up to speed on our lives, our kids, vacations, home renovations and the like. It was then that Heather unveiled her latest endeavor. She handed me a gift bag with a big smile and a sparkle in her eye. I pulled out a book – a children’s book – “Everything is OK. Love, God … written by Heather Momper Leonard”

“WHHHAAAAAAT???” My eyes immediately welled up with tears. She did it!!!! We both have talked for years about writing children’s books – and now here hers was! No longer just an idea – a tangible, real life book that I was holding in my hands! Heather went on to explain the story of the book and then insisted that I open the front cover. So I did.

“For my children, anyone searching, and all those who have lost someone dear to them.

Dedicated to Nora Rose Yusko”

😭😭😭😭😭😭😭😭😭😭😭 OH. MY. GOSH. Could not even believe this sweet, kind tribute to sweet Norns. I paged through the beautifully illustrated book through a haze of tears. It was perfect. I hugged her and cried some more. Wow.

This year hasn’t been an easy one. Life has been brutally hard for various reasons. There are days where I struggle to sense God’s presence in my life. I get distracted with trying to figure everything out and trying to put all the pieces together on my own. Days where I feel defeated, beat down and hopeless. The title of this book could not be a clearer message: “Everything Is OK! Love, God” – – stop trying to figure everything out on my own. Trust Him!!! Look for Him!!! He’s HERE!!! He wants to and is going to be here with us through it all.

Thank you, thank you , thank you from the depths of my heart for this beautifully written and illustrated book, Heather. I am so excited that you fulfilled your dream of writing a book, and so touched that you were inspired by Nora and all of the ways that God made Himself KNOWN to us through her. You are an amazing friend.

To everyone reading this, I hope that you will be inspired to get your own copy of this sweet, sweet book. It is available on Amazon: https://www.amazon.com/Everything-Love-Heather-Momper-Leonard/dp/148972088X

Be blessed!

Aleisa

Unthinkable that we’ve weathered four June 3rds, that Nora has been gone for TWICE as long as she was here with us. Time has unapologetically ticked on without her. A substantial part of me is still stuck in 2014, refusing to adhere to any clocks or calendars. The rest of me has no choice.

Every year it’s a struggle, for obvious reasons — we MISS her. It’s painful to remember those last days and hours we had with Nora. It’s also a struggle trying to find the “perfect way” to honor Nora’s last day with us. We’re not big planners or organizers. Something big and public is completely overwhelming, yet something low key seems inadequate. What do we do?!

And then as if God had already pre-arranged everything, beautiful opportunities have presented themselves to us on our sacred June 3rd. Our first June 3rd, it was a ceremony at Xavier University to honor and remember organ donors. (Nora was a cartilage and tissue donor). This year, for the third year in a row, we were invited to Camp Lionheart through Starshine of Cincinnati Children’s Hospital. It is specifically for families who have experienced the loss of a child/sibling. It always falls in June, often on June 3rd.

So here we are in community with a dear collection of families who are also forced on through time without their sweet children. There’s no need to try and explain the weight of the sorrow that we carry around with us every single day. It’s not strange or awkward to bring up our children and talk about them with one another. We have met some fascinating people here all with their own unique stories and experiences, but with whom we share this common bond.

We all sleep in cabins scattered throughout the camp. Creaky bunk beds, rudimentary showers, and the basic necessities. We gather together in the dining hall for our meals, and then there are organized activities throughout the day — swimming, zip lining, hiking, arts and crafts, fire pits and camp songs that are led by the animated camp leaders. It is truly the awesome “camp experience” in every sense of the word! All this — just handed to us on THIS particular weekend as a soothing balm to our wounded hearts. We’re so very, very thankful for Starshine / Cincinnati Children’s Hospital and all that they do to nurture families like ours who have endured the unimaginable.

Here are some photos from the weekend:

William & Greta

Norns Doll on a hike

Greta & I building a rock tower

Our dear friends the Reimers and the Lundstroms

We also paid a visit to the cemetery this evening:

And now these three remain: faith, hope and love. But the greatest of these is love. (1 Corinthians 13:13)

The merciless ticking of the clock coupled with the fear of the unknown threatened to erode the very core of my being. Methodical and intentional breaths helped keep my head above the crashing waves. It all seems a thousand years ago, and yet only yesterday from where I sit in the corner of this hospital. From outside the window, the silhouette of the towers, concourses and office buildings slowly become visible against the backdrop of the early morning sky. A patterned glow of windows interrupt the darkness, and I contemplate over each one. 

Is that the room where I cradled my newborn birth daughter for the first time? Which was the room where I drew my own first breaths? The rooms where my siblings were born – when I proudly wore my “IM A BIG SISTER” sticker. Which is the window that my Oma looked out of from her hospital bed after she fell and broke her leg? Or the stark room where I spent the night with my sister after her first son was born, waiting for adoption papers, both of us still kids ourselves. This morning one of these rooms holds a mother and a father and a precious baby boy, not yet born. As the sun rises higher in the sky and up over the buildings, I pray for their peace, for visible, tangible evidence of God’s presence — not because of lack of faith, but because we NEED him that close. Inside his mother’s womb, a little baby boy is cradled in pure, unconditional love. He is safe in his cocoon, blissfully unaware of his extra 18th chromosome, and all of the fears and worry that accompany his condition. His only basic primal need is to be loved. He is LOVED.

Father God, I pray Your peace and serenity upon this family. Dispatch your legions of warrior angels to thwart off the attacks of the enemy who looms nearby studying and searching for a way in. There is no room for the enemy in any part of this hospital, Lord. Guard the hearts and minds of this family from any fear and unrest. Help them to keep their focus solely on you. Lord, I pray that your glory will shine forth through the life of this little boy who is so very, very loved. I pray that the decisions involving his care will be made clear and concise, that all of the right people will be in place at the right time. Upon his birth, I pray for this little boy’s strength and stability, that there will be no emergencies that would prevent him from spending time in his parents’ loving embrace. We thank you, Father for the beautiful life of this baby boy. He is fearfully and wonderfully made, perfect in Your loving eyes. We have no idea what is going to unfold today, but You do, Lord. You are in control of each and every little detail, mapping out each of our days. We surrender to Your will, our trust is in You. 

When peace like a river, attendeth my way
When sorrows like sea billows roll
Whatever my lot, thou hast taught me to say
It is well, it is well, with my soul

Amen.

I blinked back a piercing surge of tears as a family suddenly wheeled past in a sea of pink balloons and flowers, a tiny pink bundle asleep in her smiling mama’s arms. I stoically held my bleeding, shattered heart together inside my chest and pressed the elevator button. Exactly to the day, four years ago that was us with our new baby. Sweet Nora. I remembered how elated and also how terrified we were to be leaving this very same hospital with a baby that miraculously survived delivery yet “likely won’t live past the week”. But wait!!! We are SO madly in love with her!!!!!!! Doesn’t that count for SOMETHING?!?!??!! I remembered the unstoppable stream of tears that poured down my cheeks soaking my shirt and Nora’s tiny receiving blanket. I remembered the smiles that faded into concerned pity as people passing saw my contradicting tear streaked face. Deep breath, slow exhale. We had so much more than “maybe a week”, I reminded myself. Yes, we were so madly in love with her, and that counted for something. That counted for EVERYTHING. Refocus.We were there at the hospital this evening to visit my Oma (my German “grandma”) who sadly was taken away in an ambulance last Wednesday after she fell and broke her leg at my parents’ house, where she is living. She is 88-years young and has had seen and experienced a myriad of struggles and hardships throughout her brave life. Her insuppressible spunk and willpower combined with the stereotypical German stubbornness has pulled her through each and every battle she’s had to face. This current battle of her broken leg is complicated by the break’s close proximity to one of her prosthetic knees. It will require a delicate and involved surgery with a specific surgeon who specializes in complicated orthopedic cases such as this. The first attempt at surgery was abruptly terminated last Friday because of a cardiac issue that arose after they had put her under anesthesia and positioned her for the operation. She recovered well out of the anesthesia, but in the mean time they have had to figure out what is going on with her heart. The good news is that she did not suffer a heart attack. Surgery was rescheduled for today, but then rescheduled again for this Wednesday to make provisions for specific cardiac anesthesiology to be on hand. Even still, there is a pretty substantial risk involved. Oma could surely use and would most certainly appreciate any and all prayers!  
Oma and I this past Easter

William and I had a nice visit with her today. She is in great spirits, all things considered, and the hospital staff seems to really enjoy caring for her and interacting with her. She is truly, truly a one-of-a-kind character. We prayed over her and I hugged her and kissed her several times before we left. She told me that if something happens tomorrow, she doesn’t want us to be sad. 😭😭😭  I reassured her with a lump in my throat that God is watching over her, and little Norns is too.   William noticed that the hospital campus shows up on my GPS screen in the shape of a heart.

“In him our hearts rejoice, for we trust in his holy name.”

‭‭(Psalm‬ ‭33:21‬ ‭NIV‬‬)

  
I remember laying here in this same spot four years ago protected in an otherworldly sanctuary of peace. It was almost ridiculous that I wasn’t curled up on the floor in a puddle of anxiety laced tears. My hand hovered over you on the other side of my skin, savoring each and every one of your little pokes and kicks. I was keenly aware that those sweet flutters could very well be some of the last experiences we had together on this earth, but I was blissfully unable to be bothered or upset by that. Oh, the legions of warrior angels that must have been standing guard around us, protecting our gift of serenity with all their might. A grand adventure was about to unfold! There was no time to be wasted or stolen with lies.

There are the days when the pain of being without you is excruciating. I want and crave nothing more than to sniff you and kiss you, stroke your sweet cheeks and nibble on your knee muffins and your little elf ear. You were (and still are) such a huge gift. Tomorrow is the anniversary of a HAPPY day. Even though you won’t be here with us in the sweet “stinky” flesh to celebrate with us, I don’t want the beauty of your LIFE to be tarnished with the sadness of your death. (***ADD moment: Is it weird that a song called “Life and Death” is playing on Pandora right now?!???!***) So warrior angels? If you follow this blog and you’re reading this right now, will you please keep a watchful eye over us as you did so efficiently those four years ago? 

You brought unfathomable love and joy into our lives, Nora. I am eternally grateful for our statisic-defying 777 days together and the absolute privilege of having you as my daughter. Although we are apart for now, you are still very close in my heart and ever on my mind. Tomorrow we will celebrate you with cake, ice cream, sparkles and balloons and of course your favorite song “Happy Birthday”. We certainly won’t sound as beautiful as the angels, but we’ll do our very best!

Happy, beautiful birthday, sweet Lady Baby!

“In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.”‭‭(1 Peter‬ ‭1:6-7‬ ‭NIV‬‬)

I squeezed my husband’s hand, as he prayed out loud over my round belly. Moments later, the warm yellowish fluid accumulated into the sterile syringe. Shallow breaths, and the fears of “what if” pulsing through my mind. “These things only happen to OTHER people!!?” I frantically reassured myself. We left and we waited and we waited. Five never-ending days later, January 9th at 1:30 pm, the phone rang. We hadn’t thought to be together on the expected day of the call, because certainly “everything was completely fine.”

My eager optimism was shattered into a million pieces as the geneticist sorrowfully explained to me that our baby’s amnio results showed a triplicate of the 18th chromosome. Trisomy 18. I don’t remember anything else she said as I crawled screaming out of the bathtub into a hysterical heap in the middle of the bathroom floor. I laid there numb, with my heart ripped out of my body. Why. Why. Why, oh, God, WHY. In those fresh, horrible moments we suddenly became trapped in a world of horrible and vague uncertainty. There would have been no way of knowing what a precious gift lay curled up, snug inside me. That I regarded her as some terrible genetic disaster makes me weep sad and bitter tears. I won’t beat myself up over those illogical apprehensions. How could I have known otherwise? As the agonizing layers of days, weeks and months were peeled away, our gift was revealed.

Not a diagnosis. Not some horrible anomaly. A beautiful, precious, angelic, amazing, wonderful and perfect little girl. She might not have been perfect according to medical standards, but she was beyond perfect in our eyes. As I look back at today, 2012, my eyes well up with tears. Yes, I’m sad to have said goodbye to my own hopes and dreams of a “typical baby”, but once I held Nora in my arms, there was no other baby I would have traded her for. God had a much greater plan for me – for all of us.

I love this quote by Pope Francis that my friend Maggie shared with me this morning:

“Health is certainly an important value, but it does not determine the value of a person. Furthermore, health in and of itself is no guarantee of happiness: for this may occur even in the presence of poor health. The fullness towards which every human life tends is not in contradiction with a condition of illness and suffering. Therefore, poor health and disability are never a good reason for excluding or, worse, for eliminating a person… A society truly welcomes life when it recognizes that it is also precious in old age, in disability, in serious illness and even when it is fading; when it teaches that the call to human fulfillment does not exclude suffering; indeed, when it teaches its members to see in the sick and suffering a gift for the entire community, a presence that summons them to solidarity and responsibility.”

How blessed I am to KNOW this firsthand. Thank you, God. Thank you, Nora.

The past couple of days have been very, very difficult. Yesterday Nora had terrible withdrawal symptoms and high fevers. There didn’t seem To be any answers and we couldn’t get things under control. She is finally sleeping after being awake and agitated for 32 hours straight.

In an attempt to find the source of the fevers they opted to do a CT scan just to cover all of our bases and make site we weren’t missing anything. We were told it probably wouldn’t show anything, so not to worry. (Because we all know how much worrying helps things.)

We were initially told that the spot of fluid was on her stomach, but as it turns out the spot is on one of her lungs. It is unrelated to her stomach issue. An ultrasound revealed that it IS able to be accessed for obtaining a specimen of the fluid, but also showed that the fluid does not look to be clear which can be an indication of infection (as would her fevers and elevating white blood cell count). If it IS infected she will need surgery to drain it, which possibly means another intubation. Obviously we would want to avoid that. Silver lining scenario… Maybe this all happened with her belly to reveal a small but potentially worsening problem on her lung. How else would we have known?

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
(Romans 8:28)

Just wish God didn’t have to go and be all DRAMATIC about it!

Please pray for Nora. We have another long day ahead of us… And she’s waking up crying again…

Nora had another very good night. Her heart, lungs and kidneys are all performing exactly as they should be. Yesterday afternoon a part of the surgery team commented that if there were an excess of dead tissue in her body – it would be reflected in other areas. That is not the case. She is doing exceptionally and surprisingly well. They are very optimistic that when they open her up again this afternoon they will see nicely profused, wonderful PINK!

Surgery was originally scheduled for 9:00 this morning, but because of a conflict between the cardiac anesthesiologist and the surgeon we’ve been bumped back to 2:00 this afternoon. We were initially a little bummed out about this, but as William commented – maybe God needs this extra 5 hours of healing to take place. God’s timing is perfect. Another huge lesson I’ve learned through all of this.

I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord. (Psalm 27:13, 14 NIV)

As I was driving home last night to grab some odds and ends I passed an electronic billboard along the highway. I have no idea what it was advertising, but the bright pink glow and the words THINK PINK in bold white font immediately caught my eye. I caught my breath as tears welled up in my eyes and a big smile spread across my face, “YES! Yes, I will!!!”

The organized chaos prior to surgery:

Nora just underwent emergency surgery for gastric volvulus. Somehow her stomach flipped on itself and was obstructed. She was in surgery for about an hour. The surgeon came out afterward and informed us that the condition of her stomach was initially very bad. They allowed it to rest for 10 minutes instead of drastically deciding to remove it. When they re-examined it, it DID pink back up in some areas but not all. They have done a partial closure so they can go back in tomorrow, 2 days, 3 days(?) to see if it has revived any more. At that point they will make the decision to remove any parts that are necrotic. We are PRAYING for full tissue recovery, that NO parts will need to be removed. They will also place a g-tube in her belly to prevent any future episode of her stomach twisting. This will “anchor it down” as it has been explained to us. She has quite a steep road to recovery ahead of her, but as our dear friend Tommy reminded us: STAY FOCUSED ON THE PRESENT. I think it was Proverbs 4:25 that he quoted, “Let your eyes look directly forward, and your gaze be straight before you.”

Every Little Thing is Gonna Be All Right

I am in awe of all of your encouraging texts, comments and messages, your PRAYERS are so comforting and they are MOVING MOUNTAINS!!!!! I’m so sorry I can’t respond to each and every one right now. I thought we’d be coming up here maybe for some IV fluids…. Had no idea things were this wrong. Trying to catch my breath and get my feet back on the ground after this frying pan upside the head!