This past June my friend Janelle contacted me about setting up a “Give Back” benefit in Nora’s memory. As a Thirty-One consultant she explained her idea of having people sponsor a Thirty-One bag or tote which we would then fill with toiletries / arts and crafts and appropriate miscellanies for parents and children staying at Children’s Hospital. Recalling our own anxious times with Nora in the hospital, I thought this was a great idea. Those extra little somethings can be such gesture of love, especially during times when everything else seems to be upside down. In many instances shampoo, a toothbrush, hair ties, etc. were the last thing that that terrified mama was thinking about when she suddenly found herself holding the tiny hand of her toddler in a hospital bed. For the siblings and/or the patients themselves — a little diversion from the medicines, the shots, X-rays, scans and waiting rooms with some crayons, stickers or a stuffed animal — something. After some deliberation we decided that the donated bags and totes would go to the Ronald McDonald House of Cincinnati. I designed a flyer and put the word out on Nora’s Facebook page. In a few week’s time we had accumulated 26 sponsors for the kids’ totes and 20 sponsors for the parent totes! THANK YOU so very much to each and every one of you who participated! It felt so good to collectively do something in Nora’s memory, especially something that would bless people in what is likely a very scary season of their lives.

With the bags ordered, Janelle set to work collecting the multitude of contents from a variety of sources and then hauled it all over to my house where we set to work assembling it. Of course we had a couple of helpers… for a little bit anyway! Greta’s interest held a little bit longer than Gavin’s, but we got it all done in about an hour’s time!

  
  
We truly appreciate all the offers to help put these together, but we had plenty hands on deck this time around. We are hoping to do this again next year, and depending on the turn out, we might be able to use your help then!

Finally, on August 25th, William, Janelle, the kids and I packed up the bags/totes full of goodies into the car and set off to the Ronald McDonald House of Cincinnati to make our special delivery. Here are some pictures from our visit:
       

It was very sweet to be immediately recognized as “Nora’s family” by a member of the staff who was a blog follower / Nora fan. Although we had spent many nights at Children’s with Nora, we never partook in the opportunity to stay at this beautiful establishment. Each stay at the hospital was so serious, we were afraid to leave Nora’s side. Nor did we want to take up a room when our house is 20 minutes away. Some of the families listed on the visitor’s board had traveled half way around the world to receive care for their children next door at the hospital. Tears of gratitude welled up in my eyes at this reminder of how truly blessed we were to have lived SO close.

We had expected to drop off our donations and head back out, but a volunteer asked us if we’d like to take a tour! We graciously accepted! I’d have to say that if you’re faced with the anxieties of a child in the hospital, RMH does an incredible job of making sure these families are comfortable, inspired, encouraged, fed, nurtured and taken care of. I was truly touched by the presence of hearts everywhere I looked. No doubt this was a place of LOVE.

 Thank you again to everyone who helped make this possible and a big shout out to Janelle who put it all together. We’d love to do it again next year!

_______________________

A few weeks after we dropped the bags and totes off, I had the absolute pleasure of paying a visit to Ronald McDonald House again! This time I went to spend some time with beautiful Ivy and her sweet Mama & Grandmother. They had come in to town from West Virginia for Ivy’s doctor appointments and were staying at RMH! Ivy has trisomy 18 like Nora did, and was one of the first babies – if not THE first baby with trisomy 18 to receive life sustaining heart surgery at Cincinnati Children’s in 2013. She has paved the way for other babies with this condition, proving that surgery for these children is NOT futile. Ivy will be 3 in December!

It is such a blessing to know this family! We can’t wait to see Ivy and Robin again next time they’re in town!
My command is this: Love each other as I have loved you. (John 15:12 NIV)

I bow my head in tearful thanksgiving for the precious lives of Marlee Jo and Runner Cosette. How very blessed each of these little girls were to have been so loved and cherished literally every second of their lives. I pray for continued strength and for the comfort of peace to be upon these families as they embark on this painful journey of loss.

I can’t say for certain, but I imagine that Nornor jumped right out of her baff tub with her fuzzy wispy hair still wet, and ran as fast as she could to greet her sweet little trisomy sisters. When Jesus came into view she sent them off running straight into His arms.

 In Sweet Loving Memory of
Marlee Jo
July 12 – 14, 2015
&
Runner Cosette
July 11 – 15, 2015

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. For the creation waits in eager expectation for the children of God to be revealed.
(Romans 8:18-19)

Within this same maternity ward, over the course of eight years I mentored three young women through adoptions, the first in 1994. Here again, in a matter of just TWO days, I’ve been here to support TWO families in the birth of their daughters, both who have trisomy 18!

A second baby girl has been born in the room right next door to where Runner was born. Her name is Marlee. Again, I had the honor of being there to meet Marlee after she was born and to give HOPE in this uncertain situation.

Same optimal spot in the parking garage, I hurried through the familiar halls up to the 9th floor. Runner had gone home with her family just hours before, and is doing well. PRAISE GOD!!! A lump welled up in my throat as I glanced into their vacant room as I passed by. I won’t soon forget the miraculous scene that unfolded in there. I recalled how Bridge Over Troubled Water was “randomly” playing yesterday as I walked in. How perfectly appropriate.

 And now just the next room down the same intense anticipation hangs heavy outside the door as Marlee is about to be born. A familiar face from yesterday’s staff is already standing vigil, her head against the wall and tears in her eyes. We talk. We hug. We comfort one another. Sweet Shirley. 

We are met with some of Aimee’s family, who invite me to sit with them in a room down the hall. As Shirley’s attention is needed elsewhere, I accept their offer. Throughout Aimee’s pregnancy I had only corresponded with her through Facebook and had never met in person. This was my first time meeting everyone. I shared a little bit about Nora also with her family and showed them pictures. Showed them hope.

Before long, Marlee’s arrival was announced. She was here, along with the reinforced tangle of uncertainty. Marlee was experiencing some trouble breathing, but she was breathing! When Aimee and Nick were ready the visitors streamed in. I stood in wait, not wanting to impose.

And then it was my turn. With great reverence and awe, I entered the room. A very tiny pink little bundle laid on her smiling mama’s chest. Marlee. Her delicate little features demanded our attention and besieged the hearts of everyone in that room. 

 
Marlee, Runner, Nora – God’s beautiful creations that He has entrusted us with. Each mighty little life has been lavished with great purpose which will unfold day by day as the budding of a beautiful flower. 

I can’t predict the road ahead for these families – just as I could not predict my own. However, I do know that each of these little ladies will change their families in ways they never could have imagined. There will be times of intense joy, and also times of intense worry, but it will all be worth it. THIS is what it means to love your children with reckless abandon – as Christ loves us in all of our own “imperfections”. Despite this often uncomfortable interruption of “life as usual”, despite the possibility of being deeply wounded in grief, we have said YES, LORD. YES, to these sweet, delicate little babies who bring with them a message of WONDROUS love. 

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’
(‭Matthew‬ ‭25‬:‭40‬ NIV)

Please add little Marlee to your prayers. That her little body will strengthen with each passing hour, that the doctors and dear nurses will continue to efficiently and expertly attend to her needs as they arise, and that little Marlee will get to go home as Runner did. Praise you, God for these precious miracles!

Today is the day. The day that seemed so far off into the future for so long for the Lundstrom family. Today is the day that their precious little girl Runner will be born. Like Nora, Runner has been diagnosed with trisomy 18.

I have the great honor and privilege of being at the hospital to help support Natalie and Will as they welcome their sweet baby into this world.

Please pray for them. I will update later tonight.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (‭Philippians‬ ‭4‬:‭6-7‬ NIV)

The pulsing silence in my ears is synchronized to the bioluminescent firefly conversations in the trees. The weight upon my chest is heavy as I marvel at their splendor from my parked car. I am numb, and not quite sure what to do with myself, recoiling from the sadness that exploded into misplaced anger. I drive on, cringing at the memory of the blue vinyl chairs in that small little room tucked off to the side of the teal- and tan-tiled hallway. Many people, exhausted with worry had sat in those chairs in close proximity to the doctors and surgeons of their little girl or boy. Those four small walls have been audience to a sad collection of difficult conversations. It had been exactly 365 days, down to the very second, since William and I were in that room. It may as well have been yesterday; my hands gripped the steering wheel, my eyes angrily blinked away the mutiny of tears. All the “should haves” and “if onlys” threatened to latch tightly onto my thoughts, siphoning me of my peace. I shrug them off with a wince; my foot pressing the accelerator.

It had dawned on me that morning, as a merciless punch in the gut, that June 2nd was really Nora’s last full day. June 3, 2014 had only known her for an hour and a half. As I drove, I remembered how we had stayed awake through the darkness of the early morning hours, on into the first hints of daylight. We took turns holding and cradling the 25 pounds of sweetness she had left behind, marveling over her and memorizing her angelic little features. No more tubes, no more wires, no more alarms. How dared the sun come up without her?!?!

There is no way to fix the hurt, adjust the pain to make it more comfortable, or to make any of it go away. It ebbs and it flows, always there, yet pacified by the ever-presence of the Holy Spirit. I KNOW I will see her again, but I miss her. What a beautiful little life, precious little soul who I had the absolute honor of being Mother to. Seven hundred and seventy-seven cherished days that I will never, ever, ever forget.

And so the sun came up again this morning for the 365th time without her. Our hearts, they hurt, but they are also so full of the love that was left behind by a sweet little baby girl named Nora. Thank you, God for her beautiful, MIGHTY little life!

A butterfly for Ali!

Also a huge thank you to our beloved family and friends who have come along beside us to carry this heavy burden of grief with us. A special thank you to Nila M., who has gone out of her way to covertly leave a batch of homemade chocolate chip cookies on our front porch, or just a little something to let us know she was thinking about and praying for us. Without fail, on the 3rd of every single month over this past year she would bless us and put happy tears in my eyes with her kindness and generosity.  What a beautiful example to me about what it truly means to be God’s hands and feet. THANK YOU, Nila!

“Deez tings tickle!!!!!”

Thank you, prayer warriors for all of your treasured comments and heart winks, for all of your texts, phone calls and emails today and yesterday. We feel so very loved and comforted by all of the lives our sweet Nornor touched. God bless each of you!

So if there is any encouragement in Christ, any comfort from love, any participation in the Spirit, any affection and sympathy, complete my joy by being of the same mind, having the same love, being in full accord and of one mind. Do nothing from selfish ambition or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. Have this mind among yourselves, which is yours in Christ Jesus.
(‭Philippians‬ ‭2‬:‭1-5‬ ESV)

A deep aching void has been etched into my soul; the space that used to be filled with squeals and happy babbling, the sweet smell of baby skin, soft fuzzy hair — now a vacuum. There is no one and nothing that can fully replenish that emptiness, but sometimes it’s just nice to have company there.

On December 31, 2014 a couple of completely adorable and very identical twin baby boys were born, Ari & Ezra. Their Mom, Melanie is the über talented photographer that captured the emotionally captivating shots of Nora’s birth. {I hate to keep referring to her just as “Nora’s birth photographer” because she is really so much more than that.}. Adjusting to life with two new babies was difficult enough without a frightening bout of RSV that landed one and then both of the babies in the NICU when they were just a couple weeks old. Mixed in to this chaos back at home were also a 5 year old sister, Nori, and a super-mega-high energy 3 year old brother named Nico. When they were all finally back home and under the same roof it wasn’t enough to just bring them dinner. I got that “nudge” to get up off my butt and go help them.

Before Nora was born, and we had no idea what to expect from one day to the next, Melanie had written to me by email. She heard about our situation through her high school friend — my sister Emily. Melanie offered to take the birth photos, which might be the only photos of our baby. I was extremely touched that Melanie was willing to get so close to what MIGHT be a very sad and somber occasion. When she had written to me, she was only 3 months removed from the tragic loss of her sister, Ali.

After Nora scampered off to heaven, two full years later, it should have come as no surprise that the very first grave plot we were shown was literally in arm’s reach of Ali’s earthly resting spot. I had had NO IDEA where Ali was buried until that moment — and about flipped my lid when I figured it out!!! Incredible Godwink, and such a consolation. It was as if God were reminding us that none of this was “by chance”.

After Ari & Ezra were back to health I offered to come over imposed my extra set of empty hands and arms on Melanie and her sweet “Bigs” and “Littles”. There’s no way to fully fill the void of my loss, but it’s been nice to have the company of these precious little bundles in it, and the comic relief of sweet Nori & Nico, and the friendship of their dear mama.

I was delighted to brush up on my baff giving skillz each week. How precious to watch their scrawny little bodies ease into a state of delerious tranquility as the warmth of the water cascaded over their soft baby skin. Each week they got bigger and chunkier, now almost busting out of the sink. All the chins and rolls present a bit more of a challenge. Melanie warned me that there might be “cream cheese” growing in the depths of those rolls! 😂

Gavin & Greta got to come with me one day and in the words of Greta, “It sure felt good to hold a baby again!”

And how sweet to watch my “big tough” 11 year old boy respond to these baby guys with such gentle awe. This precious interaction was restorative to his soul as well.

I know full well I could never ever, even remotely, fill or take Ali’s space. But I also know that if Ali were still physically here on this earth that she would be over at that house every possible second. I’m not a replacement, not a substitute – maybe I’m just company in the void too.

Getting SO big!!!!

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
(‭2 Corinthians‬ ‭1‬:‭3-4‬ NIV)

It was a Friday night in March. Embraced by the warmth of my blankets, I lazily scrolled through my newsfeeds, my eyelids growing heavy. I was about to call it a night when a text came through. It was Kim Botto, my dear friend from church who had officiated Nora’s funeral and has helped us through our loss. A family from church had just been dealt the devastating blow of a prenatal trisomy 18 diagnosis. She wrote, “You would be the perfect one to reach out to them.”

I recalled our own first horrible days after Nora’s diagnosis. Although I did not recognize their names or yet know them, my heart broke for this family. I assured Kim I would reach out to Natalie the next day.

As I laid there on into the night I wished I could fast forward time for them to get them through these awful, anxiety-ridden days. Then I recalled the story of a butterfly cocoon from Streams in the Desert from January 9’s page (Jan. 9 was the date we received Nora’s diagnosis!!! Coincidence?!):

“I once kept a bottle-shaped cocoon of an emperor moth for nearly one year. The cocoon was very strange in its construction. The neck of the “bottle” had a narrow opening through which the mature insect forces its way. Therefore the abandoned cocoon is as perfect as one still inhabited, with no tearing of the interwoven fibers having taken place. The great disparity between the size of the opening and the size of the imprisoned insect makes a person wonder how the moth ever exits at all. Of course, it is never accomplished without great labor and difficulty. It is believed the pressure to which the moth’s body is subjected when passing through such a narrow opening is nature’s way of forcing fluids into the wings, since they are less developed at the time of emerging from the cocoon than in other insects.

I happened to witness the first efforts of my imprisoned moth to escape from its long confinement. All morning I watched it patiently striving and struggling to be free. It never seemed able to get beyond a certain point, and at last my patience was exhausted. The confining fibers were probably drier and less elastic than if the cocoon had been left all winter in its native habitat, as nature meant it to be. In any case, I thought I was wiser and more compassionate than its Maker, so I resolved to give it a helping hand. With the point of my scissors, I snipped the confining threads to make the exit just a little easier. Immediately and with perfect ease, my moth crawled out, dragging a huge swollen body and little shriveled wings! I watched in vain to see the marvelous process of expansion in which these wings would silently and swiftly develop before my eyes. As I examined the delicately beautiful spots and markings of various colors that were all there in miniature, I longed to see them assume their ultimate size. I looked for my moth, one of the loveliest of its kind, to appear in all its perfect beauty. But I looked in vain. My misplaced tenderness had proved to be its ruin. The moth suffered an aborted life, crawling painfully through its brief existence instead of flying through the air on rainbow wings.

I have thought of my moth often, especially when watching with tearful eyes those who were struggling with sorrow, suffering, and distress. My tendency would be to quickly alleviate the discipline and bring deliverance. O shortsighted person that I am! How do I know that one of these pains or groans should be relieved? The farsighted, perfect love that seeks the perfection of its object does not weakly shrink away from present, momentary suffering. Our Father’s love is too steadfast to be weak. Because He loves His children, He ‘disciplines us . . . that we may share in his holiness’ (Heb 12:10). With this glorious purpose in sight, He does not relieve our crying. Made perfect through suffering, as our Elder Brother was, we children of God are disciplined to make us obedient, and brought to glory through much tribulation.”

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.(Romans 8:18)

===========

Natalie and I have since met together for coffee a couple of times, shared pieces of our lives, our prayers of hope, and our tears of sorrow with one another. Tucked away in the dark warmth and safety of her mother’s womb is a precious baby girl. She is equipped with an extra 18th chromosome that she will use to bring glory to her Almighty Creator.

While I can’t physically or otherwise fast forward time for Natalie and her family, it is my honor to be able to cheer them on as they emerge THROUGH this present suffering of their lives and in to greatness!

A beautifully written account of Natalie & Will’s journey has been kept on their Caring Bridge page. I encourage you not only to visit it, but please pray for them and their treasured baby girl. Her name is Runner. The meaning behind her name is so perfect and so befitting, as her Mama beautifully illustrates in a touching letter to her unborn baby.

===========

This past Saturday our church embarked on #GoCincinnati — a church-wide endeavor to go out and bless the city and surrounding communities. Our family was assigned to help with landscaping at Imago Nature Preserve. While William helped erect a split rail fence, the kids and I helped clear out some planting areas and some trails.

While all of this was going on I was absolutely smitten with an adorable little boy who was working very hard with his Dad. He made several determined trips to the compost pile with his little red wheel barrow full of weeds. It was impossible not to smile every time I looked over at them and I even snuck a couple of pictures. I’m not really in the habit of taking pictures of “complete strangers” kids, but I just kinda couldn’t help myself!

We were encouraged to share our Go Cincinnati pictures on social media using the hashtag #GoCincinnati – so I posted a few on Instagram (@AleisaAK) including the one of the cute little boy with his wheel barrow.

This cute little guy at #GoCincinnati! 🙂

I got a phone call from Natalie that evening. She had noticed on Instagram that we might have been at the same site that her husband and son had been working.

“No way!” I exclaimed.

There were several little kids on the site. I asked her what her son looked like. It was all adding up – and then I asked if her son had a little red wheel barrow with him…

“Yes! That was him!!”

Laughing, in utter disbelief, I asked if she had seen the picture I took of her ADORABLE little boy – which I had also posted on Instagram. She explained that she hadn’t scrolled all the way through the pictures yet and couldn’t wait to see!!

I had seen pictures of her family before, but I honestly did not at all make the connection!!! Because seriously — what are the odds?!?! This was so crazy!!!

Who, what, when, where, why and how would it even be possible for Natalie’s husband and son to be assigned to the same project we were??? Based on the sheer amount of people involved – there was absolutely no way to match people and families up with common interests, common prenatal diagnoses, or otherwise. (Yes, I checked!) Yet there we were were — working side by side to serve others, to serve God, and had no idea until after the fact!

Then I was “angry” 😉 that this perfectly orchestrated opportunity for our families to connect had come and gone and we were all but oblivious! But now we have this serving experience in common now too. God definitely has His loving and watchful eye on each of our families — on ALL OF US.

That God would trouble Himself with these seemingly “little things” in our lives, imagine how much He must care about the BIG things!

Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.
(‭Luke‬ ‭12‬:‭6-7‬ NIV)

Please don’t forget to check out Natalie & Will’s Caring Bridge site. Your prayers are much appreciated!