Kelly’s Tribute

The second of these moving tributes was given by Our Kelly. We have been so blessed to have her as a part of our family.

20140610-191120-69080477.jpg

Sometime in November of two thousand twelve, I needed a job. I created a profile on a babysitters’ website, hoping to find a few new families to babysit while I attended school full time. After several weeks went by, things were going well. I was considering taking my care profile off of the website, assuming I couldn’t possibly fit any more new sitting commitments in my schedule.
Around that time, I had a new message from another user on the website, a user named “William Y.” The subject line read simply, “A Little Help.” I opened it, and learned that William Y. needed some care for his three children, especially their baby named Nora. After setting up and completing an interview with William Y., who I now knew as William Yusko, I learned more about his family, and about this sweet baby named Nora, who had a genetic disorder called Trisomy 18, or Edward’s Syndrome. We planned on my stopping by their home that Friday night so I could meet his wife Aleisa, and their children Gavin, Greta, and baby Nora. That evening finally arrived, and I was nervous to meet Nora, and to be responsible for her and her siblings while their parents went out to dinner. Since everyone knows the end of this story, you probably think that that first night that I babysat Gavin, Greta, and Nora went perfectly. I wish I could tell you that; but it wasn’t. It was basically a babysitting fail.

For starters, a terrible thunderstorm raged all night and the house shook with every crack of lightening. Gavin and Greta were understandable shy and didn’t really feel comfortable talking to, or even coming near this strange new person in their home. I accidentally froze their TV screen and didn’t know how to fix it, so the kids couldn’t watch their movie. Worst of all, this tiny, seemingly fragile and oh-so-breakable baby named Nora would not stop crying, no matter WHAT I did to try and appease her. From the moment her parents left, the house was filled with her wailing, as Gavin and Greta looked on nervously. At one point, even sweet little Greta began to cry. By the time William and Aleisa returned, paid me, and I left, I had already chalked that night up to “a learning experience,” knowing that this poor family would never be calling me to babysit again.

Less than a week went by, and to my great surprise, the phone rang. It was William Yusko, asking me to come by the next weeknight to spend some time with Nora. I was shocked, to say the least. I remembered thinking, “Wow, they must have either really liked me, or they are SO desperate!”
That weeknight came and went, and a few more weeks went by. By then, sitting for the Yuskos had become a regular gig. However, I still felt pretty discouraged.

If you had the privilege to know Nora while she was here on this earth, then you know she’s a VERY “particular” little lady. She knows what she likes and knows what she wants, and she has NO problem letting you know “you’re doing it wrong.” So every time my phone rang and the Yuskos wanted me to babysit or provide respite with Nora, I was surprised. I felt like I did nothing right with Nora. On top of it all, I hardly knew how to interact with Gavin and Greta because I was always so stressed about getting it right with Nora.

But, as you may have surmised, things began to change. One afternoon I was standing in the Yuskos’ kitchen and making a bottle, when a breathless and red-faced Greta burst through the front door, home from school. “I ran all the way home from the bus stop!” she cheerfully explained. I asked her why. “Because I saw your car in our driveway!” , she smiled. Soon after, Gavin and I discovered that our sense of humor and maturity level were about the same.

And best of all, on a snowy December night, sometime around 3 AM, I rocked a certain fussy baby. Her sweet blue eyes looked into mine, her tiny mouth gave a content smile, her little body drifted off to sleep, and her little baby finger now had a nanny named Kelly wrapped tightly around it.
As the months went on and 2012 became 2013, my love for Nora and for the Yuskos grew. I started staying later and later after my scheduled time, just to play with the kids or have dinner with the family. My cell phone soon became filled with nothing but pictures of the kids. My friends and family commented how all I talked about anymore were those Yusko kids. In June of 2013, I moved into the lower level of their home. I started going to nearly all family functions, feeling not just at home with the Yuskos, but with their extended family as well. These three children began to consume my heart.

By now, I knew this miracle baby inside and out. Her likes and dislikes, her moods, her different cries, her sleeping patterns, and her sweet and oh so sassy disposition. Before my eyes, that fussy little baby became a big, chubby toddler, and my very best friend. And like a true best friend, Nora began to change my life for the better, in ways I’d never imagined. I began listening to almost nothing but Christian radio, since that’s what Nora loved. I discovered my love for Crossroads church and a renewed relationship with Christ, and got baptized on April 30th, 2014.
I know I’m not the only one whom Nora brought closer to Christ. Hundreds and hundreds of followers on Aleisa’s blog have been touched by Nora’s story, and by the miracle of her life. When Nora was hospitalized this past January, a family member of mine told me that she literally got down on her knees and prayed for Nora’s health, something this woman had not done in over ten years.

My dad suddenly and unexpectedly passed away on February 25th of this year, at the age of 48. Nora has been my rock through this storm. I wasn’t able to check out and fall apart through my pain, because my sweet Nora needed me. She would let me hold her and didn’t mind if I sobbed uncontrollably, but would smile and rub my arm.

Nora inspired me every day to live my life better. I loved to watch her wake up from a nap or a deep sleep. She would open her eyes, look around, and just smile. She was happy to be awake. Happy she was in her house. Happy that it was a plain old rainy Tuesday. If this child, who has overcome so many obstacles and likely had more to face, could wake up every day with such hope and joy, couldn’t I? Couldn’t we all? It shouldn’t surprise anyone when I confess that Nora is my hero. She will forever be my hero.

So now the question is, what are we going to do? How can we go on without this sweet girl? How can we live on earth without Nora Rose? Well, I’ll let you know when I figure that out, but what I CAN tell you is this: We have been left a great responsibility. Nora’s Mother. Nora’s Father. Nora’s Nanny. Nora’s Nurse. Nora’s Follower. These are our titles. Our job now is to live up to them, to work the rest of our lives to somehow be worthy enough to be associated with this angel, this miracle, this Prophet to the Nations. Thank you.

Sarah’s Tribute

The previous post was the tribute I wrote and shared at Nora’s funeral service. There were 2 others who gave beautiful tributes and then the amazing eulogy. I want to share their words with those of you who were unable to be there. The first of the three is from Sarah, my dear sister.

20140610-115833-43113748.jpg

I’m Sarah.  I’m blessed beyond belief to say that I am Aleisa’s younger sister.  I know I speak for our other siblings, Joe and Emily, when I say that she has been a pioneer on so many fronts, paving paths for us.  She has been a shoulder to cry on, a listening ear, a source of incredibly creative silliness, and most importantly, a vessel for sharing God’s Word and God’s Truth.  The best advice I have EVER gotten came from her.  In my time of despair begging her, “What should I do?!”  She replied with a quote from Psalm 46, “Be still.  Be still and know”. That, my friends, is powerful advice!  She has the most gigantic heart anyone could ever imagine.  Many of you may not know, but today is her birthday.  Who on this earth could be so selfless to be accepting of an event such as this on her birthday?!

I know there is a lot of hype these days with the dislike of social media and the “put your phone down” activists, but look what such technology has allowed with Nora’s story! The sharing of hardships, happiness, tears and joy, not only quoting scripture but sharing with the world how a humble family applies it to real life!

My Mom shared “Today’s Word” from Joel Osteen with me yesterday and we thought it was worth sharing to describe exactly what I’m talking about:

The scripture is from 2Timothy, “Every scripture is God-breathed…so that the man of God may be complete and proficient, well fitted and thoroughly equipped for every good work.

Joel continues to say, “God has equipped you with everything you need to fulfill your destiny though His Word.  The scripture tells us that as believers in Jesus Christ, we are anointed.  The word “anointing is the power of God which gives you courage, strength and ability.  When you put the Word of God in you, you are receiving that anointing, you are building your faith, and you are being equipped for every good work.  The next time you start to wonder if you have what it takes, go to God’s Word and stir up your faith.  Focus on His Truth which says you are well able to do what he has called you to do.  You can accomplish your goals.  You have the ideas, the creativity and the talent to be successful.  You can overcome every obstacle!  You’ve been armed with strength for every battle; the forces that are with you are greater than the forces that are against you and you are thoroughly equipped!

Based on a quote from Matthew chapter 6, the Lyrics of one of my favorite songs goes, “Tweet tweet tweet way up high in the sky fly the little birds, without a care in the world, and how much more does the Father provide for the ones He loves?”

God does care about even the tiniest creatures, as tiny as a common house sparrow like the one that Aleisa nurtured as once a tiny featherless bird, who was named Ava and cared for & loved for 9 years…

Speaking of such care, the book of Matthew, chapter 25 says, “His master replied, ‘Well done, good and faithful servant!  You have been faithful with a few things; I will put you in charge of many things.  Come and share your Master’s happiness.’

God saw Aleisa’s gentle and loving ways. He saw William’s strength and willingness to follow His plan. He carefully and purposely chose them to be Nora’s Mom and Dad. He knew they would accept this calling on their lives with love and understanding, even though they knew how difficult it would be.

I quote Aleisa as she has said without hesitation, “If we were asked to carry, care for and love a very special baby,,,but then we’d have to give her back after 2 years,,,we’d still do it.”

The amount of time spent on this earth matters very little. A man can live 90 years and never find God, know Him or accomplish His plan. Someone like Nora, on the other hand, only living on this earth for 2 years, has taught thousands of people the meaning of love, she brings people to the Lord and teaches us the fragile nature of life. That little girl loved her life! She loved her Mom and Dad, her brother Gavin and her sister Greta, her Kelly.  She loved her baffs and her milkies she loved to squeal it out and let everyone know just how happy she was to be alive! She had such a strong and distinct personality…When you focus on all that somebody IS rather than what somebody ISN’T, beautiful things happen.

I was reading back in Aleisa’s blog. Pregnancy day 42, it says: “Dear Nora, As I write to you I’m resting in my bed reveling in your spritely flutters and wiggles.  I think of your sweetest little cheeks, your tiny button nose and your beautiful little eyes. Those beautiful little eyes that I dream will one day soon look up at your Mommy and Daddy expecting nothing but love.  We have an over abundance of love for you, sweet Nora, if only that were enough.”

But don’t we all see it now?! Love was enough! Love is enough! Love will always be enough!

NOT ONE of us in here can say that our lives aren’t better from having Nora in it.  How can anyone doubt God’s words to our little modern day Jeremiah, “Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations”.    Can you imagine her welcome into heaven?!  I can hear the shouts of glory and victory: “Nora!  You did it!  You did it”!

Nora couldn’t have fulfilled the calling of her life without her parents love and stewardship.  Without her parent’s unwavering faith in God’s plan.

Her little life’s works will continue to go on in so many ways. As I stood in the hospital room with them after Nora had passed away, William came back with the news that Nora was eligible to donate cartilage. I quickly prayed for the Holy Spirit to lead them to the right decision. Aleisa was very truthful in her words, “You know, people are always like, yeah yeah, organ donation….but when the decision comes down to your own child?!”

Seconds of silence went by, “This isn’t Nora anymore,” she said, “If we can help other children by donating her cartilage, I say we do it”. William quickly agreed and the decision was made. How bold. How selfless. How giving. What Love.

I know I speak for every person in this room when I say, thank you Nora, thank you Aleisa, thank you William.

Now let us today, not only honor the life of our precious angel Nora Rose who will be so painfully missed, but let us also honor the birthday of Aleisa, whose own birth and life allowed, embraced and cherished Nora’s beautiful life.

How lucky we are to have had something that makes saying goodbye so hard.

Thank you.

Praise You in This Storm

This is the tribute I wrote for Nora’s funeral service. {Post note: I was actually given the strength to get up and read it!}

MommyDaddy

As I put my hand on my forehead in despair I feel the tender strain of the muscles and sinew beneath. They’ve been contracted and skewed with unfathomable grief over the past days as I’ve tried to absorb the reality of a life without Nora in it. For a moment I was angry with God, “If this was her time to go, why was it prolonged??? Why didn’t You just take her that horrifying day in the shock and trauma bay??” Just as quickly as I yelled out, I realized. How often after we lose a loved one suddenly do we wish for “just one more day”. Although we weren’t thinking along those lines, AS it seemed like Nora was getting better, I now realize that God gave us not “just one more day”, but he gave us FIFTEEN OF THEM. Those 15 days were spent focused on Nora, PRAYING for her and loving her profoundly. He gave us the gift of one last smile, one last visit from her brudder and her sister, her Kelly and her beloved relatives and friends before He took her home. He gave me the GIFT of laying peacefully next to her in her little hospital crib in the dark, her Daddy on the other side, and surrounded by everyone who loves her. There was no longer a crisis or an emergency. It just WAS. It was her time. So we held her little hands and we whistled and we sang. We stroked her little head and kissed her precious cheeks and told her how much we love her, as we walked her to Heaven’s Door. My heart is wrapped in a mysterious shroud of peace as I look back at how God so tenderly prepared us for these final moments. The 2 week hospitalization in January prepared us for the gift of these 15 days. We got to know the doctors and the nurses and they got to know us and Nora. We were all too familiar with the parent sleep rooms, the teams of doctors rounding, the food menu, medical terminology and on and on. This wasn’t a foreign land that we were suddenly thrust into. There was one part of the hospital that we had never been, but it was exactly as horrible as I had imagined it. My eyes scanned past the skids of medical equipment, diapers, and sanitizing supplies there in the bowels of this huge ship as we trekked along with the clergy and a nurse. Nora’s Daddy held her tightly as if to protect her from it all, a trail of tears behind us. And then there they were. In such a hallway where it seems almost laughable and senseless to hang any type of artwork — THERE THEY WERE.

20140607-150155-54115154.jpg

I probably seemed hysterical and out of my mind as I pointed out not one, but two framed photos featuring the THREE BIRDS. The three birds, signifying the Father, the Son and the Holy Spirit who have revealed themselves to us over and over and over again were THERE in that ugly hallway. It was exactly that little bit of reassurance that we needed to keep putting one foot in front of the other, to keep breathing, just like so many other times. The chain of unexplainable “coincidences”, for lack of a better word, were put in place as guideposts. They have made us keenly aware that this path is NO ACCIDENT, nor are we walking on it alone.

Late Thursday night as I was rummaging through computer files trying to compile music and two years worth of photos, I stumbled across a short story I had written for a writing class back in 2001. It’s called:

M I S S E D
© 2001 Aleisa
The sun was shining down warmly upon my skin that day. I clearly remember the sound of the dry grass crackling beneath my feet as we walked to that tiny plot of land. There were no clouds, only a hot summer breeze that danced with wisps of my hair. Never had I seen such a delicate baby, but never for a moment did I give up hope. The words of the pastor were soft background noise, as I was completely distracted by your sweet memory. Was there nothing I could have said? Nothing I could have done? I walked away from there without you in my arms, but instead forever in my heart, my love.
A strange emptiness fills our home, neighbors give their silent nods of remorse. I try to keep my empty hands busy and for short periods of time, I forget. But just as soon as I forgot, I hear the echoes of your first cries. I remember the loveliest little baby and the day I was your mother. God will take care of you my little flower. God will rock you in his arms.

Eerily prophetic, but yet another instance of how God was preparing my heart with empathy before He commissioned me with my own assignment. There have been so MANY instances, I could stand up here and ramble on about them all day long.

There have been no mistakes and there is nothing that we wish we would have done differently. I thank and praise God who entrusted us with this beautiful little miracle named Nora. I thank Him for giving us the strength to say YES when the world suggested we opt out. I give thanks and praise to God for the gift of writing and a creative mind that enabled me to share Nora with the world. Thank you GOD for the indescribable joys, and yes thank you too for our sorrows. Book of Romans, Chapter 8, verses 18 – 19 states, “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.”

Nora was loved every millisecond of her life not only by us, but by all of you and the thousands around the world who have followed along on our journey. Her beautiful two years of LIFE are the fruit of your prayers, when the odds and statistics were stacked against her. She only knew love, as is evidenced by her beautiful little smile. The little bit of suffering that she did endure, is not worth comparing with the GLORY that has now been revealed in her.

As we continue along on our journey, I am boldly confident that God will continue to reveal His presence to us in these days, months and years to come with the hearts, the trios of birds, songs on the radio, etc. Many of you also see them and we are so touched when you share them with us. In a book called “When God Winks” by Squire Rushnell he refers to these coincidences as God winks, “Like a wink from your grandfather, these winks are communicating God’s message to you: ‘Hey kid, I’m thinking about you — right now.”

20140607-150155-54115411.jpg

His Way is Perfect

From Jesus Calling

I am involved in each moment of your life. I have carefully mapped out every inch of your journey through this day, even though much of it may feel haphazard. Because the world is in a fallen condition, things always seem to be unraveling around the edges. Expect to find trouble in this day. At the same time, trust that My way is perfect, even in the midst of such messy imperfection.

Stay conscious of Me as you go through this day, remembering that I never leave your side. Let the Holy Spirit guide you step by step, protecting you from unnecessary trials and equipping you to get through whatever must be endured. As you trudge through the sludge of this fallen world, keep your mind in heavenly places with Me. Thus the Light of My Presence shines on you, giving you Peace and Joy that circumstances cannot touch.

As for God, his way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in him.
—Psalm 18:30

“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.”
—Isaiah 41:13

Update from June 3:

It is with great, great sorrow that I write. Nora passed on into heaven in the very early hours of Tuesday morning, June 3rd. She was surrounded by family and friends who love her — most who were present at her birth, including her Labor & Delivery nurse. I laid next to her, her Daddy stood on her other side. We sang songs to her, whistled to her and stroked her soft hair as she was born into heaven. God has in fact answered our prayers for healing. She is completely restored, made new, and freed from all of the tubes, wires, tape, alarms and monitors. We are so grateful that God chose us to be her parents for the beautiful two years she was on loan to us. She defied all odds and statistics because so many people loved her and prayed for her. She touched thousands of lives in a way I never could hope to do if I lived to be 120. What an amazing Lady Baby, what a gift. Please pray for us as we seemingly grasp in vain at this new “normal”.

Hospital – Day 15

This is the day The Lord has made, let us rejoice and be glad in it.
(Psalm 118:24 NIV)

20140601-231720-83840554.jpg

The ultrasound revealed that the fluid mass is still there on Nora’s lung. It hasn’t gotten any bigger, so that’s the good news. They know to keep an eye on it.

Right now the “Trouble du Jour” is bright red blood draining from her g-tube along with some other colored fluid which had been the norm, minus the blood. Not sure what to make of it. Earlier someone came in from surgery to assess. The surgeon didn’t seem to be too alarmed by the blood, yes, it’s a little unusual, but said to call her back if it got worse. If see blood where I’m not used to seeing blood and it doesn’t seem to be stopping, I process that as “worse” … when maybe it’s not.

At any rate, I have to go to bed. Thankful I got to go to church this morning and spend some time at home with our Kelly and the kids. Just wish I had more energy. Goodnight and thank you for your prayers!!!!!