Nora – 89 Days Old

Posted on July 15, 2012 by aleisa

And so begins another week…

I’m grateful for a restful, worry-free weekend and feel that I have a renewed sense of hope and peace about everything. I’m trying not to get myself too worked up about Thursday. Again, what. will. worrying. solve?? Nothing. I strive to stay focused in the present and enjoy these peaceful days.

Sisters lounging around

Greta takes such good care of her little sister

A visit from MeeMee today! (William's mom)

I look over at this precious bundle of sweet baby Nora sound asleep next to me. She sleeps peacefully, radiating a little dream smile every so often (she dreams of milkies).

When I look at all 7 lbs. 8 oz. of her and think about how much I love her, it almost physically hurts. It is surreal to me to think that there could ever possibly be a greater love than a parent has for their child, yet that is God’s love for us as His children. We are made in His image which is why we are able to experience and feel love, but it’s probably a sort of LITE version. Were the full version installed on our primitive operating systems it would most certainly result in a system failure. We couldn’t handle it. It would kill us. That amazes me even though I can’t quite wrap my head around it.

Also programmed into our circuitry is the longing for eternity. All you have to do to see evidence of that is take a stroll through the grocery store or simply turn on the TV in the comfort of your own home. An endless barrage of age defying products, procedures, tips and solutions around every corner and on every other channel. Everyone wants to look 21… (myself included)! Were I to admonish these products or the people that use them, I’d be the biggest hypocrite alive! Stop for a minute though and think about this quest for eternal youth. It’s not just a passing fad or something that has come about in recent years. There has never been, to my knowledge, an era or culture as a whole that has embraced aging. No one is going out to get fake crows feet or spending hours in the salon to get their roots dyed gray. (?) (Correct me if I’m wrong!) We want to stay young and live “forever” because that is how God wired us! Eternity is so deeply rooted in our hearts, yet for many, this is just simply a way of life without bothering to think about it! Honestly, I myself hadn’t ever really given it a second thought until recently.

Perhaps this is why it pains us so deeply when we lose a loved one. In our limited reference of this world it may SEEM like this is all there is. This IS our “forever” as we know it. As Christ followers we have been given the promise of eternal life. But because eternity is only a concept to us right now in our limited minds, we don’t and can’t fully grasp it. It is uncomfortable to lose the people we love to a concept that doesn’t fully make sense to us right now, even though we fully believe in it.

So here we all are doing the best we know how with what we have been given. We love, we live, we experience heartaches and the pain of loss. Then one day (in what will then seem like the blink of an eye) this will all be behind us. The “veil” that protected us on this earth by allowing us to live in ignorant bliss will be torn. No longer will we need the protection of the concept of time. Our quest for eternal youth will suddenly make total sense. And the full version of God’s love will be fully compatible with our upgraded operating systems. I believe in that, I place my hope in that. THIS. ISN’T. ALL. THERE. IS.

He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. I know that there is nothing better for people than to be happy and to do good while they live. That each of them may eat and drink, and find satisfaction in all their toil—this is the gift of God. I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that people will fear him.
(Ecclesiastes 3:11-14 NIV)

If only for this life we have hope in Christ, we are of all people most to be pitied.
(1 Corinthians 15:19 NIV)

Nora – 88 Days Old

Posted on July 14, 2012 by aleisa

I’d forgotten to scour William’s phone for cute pictures over the past few days. I found some sweet images, plus some of my own.

Thursday evening - Nana, Gavin and Mommy loving on NorNor.

Friday evening. We were given a night out with the big kids while my dear friend Paula Miller offered to stay with Nora while we went out. William and I took the kids to our friend Brian's house. Relaxed by poolside while the kids swam. Notice the little rainbow in the sky just above the tree line!

Milkies!!!!!!!!! Where's my order????

Mmmmmm.mmilkieeeesssss!!

I happened to glance outside and saw the 3 of them on the railing. Happened to have my phone camera accessible!

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.
(Galatians 6:9 NIV)

Nora – 87 Days Old (2nd Post)

Posted on July 13, 2012 by aleisa

If you didn’t see the previous post, that is where Nora pictures (and even a couple of vidoes are).

Once again, I can’t thank you enough for your encouraging comments, FB messages, and e-mails. I am continually amazed to hear how my posts of Nora’s story have inspired and affected your lives for the better. It is definitely a mutual feeding ground. You inspire me and encourage me more than you could ever possibly realize. Even if you don’t comment, the stats of the visitors to this blog speak volumes. There are the moments where I step back and think to myself, “REALLY? Me? Something I wrote is having a profound impact in all these people’s lives??” I don’t and can’t take credit for any of it except the fear and worry — that would be mine, despite my efforts to be rid of it. However, by choosing to cling to my faith and turning to God during this trying time I believe God is working through me in what I write with the talent He gave me. I just marvel and question as to why God would have chosen ME of all people to engage in this journey. I never imagined myself as some kind of spiritual leader, or holy dignitary, and certainly not saying that I am! I love to partake in Bible studies, but I would’t consider myself an expert in scripture. I still have to page through the whole Bible twice trying to find a particular book before eventually resorting to the Table of Contents.

I know there are probably people from my high school or college days wondering, “What in the heck??” The person writing these posts probably isn’t the Aleisa they remember. I most assuredly don’t suddenly have it “all together” now, and I hope that I don’t come across that way. I still yell at people doing 45 in the left lane, I still lose my temper with my kids and the phone and cable companies, my sense of humor is often times inappropriate, I don’t always put my grocery cart back in the cart corralle, and I rip the tags off of mattresses and pillows. I also still rock out to the Beastie Boys from time to time as well (but I don’t think God so much minds that?). So why would God choose me? I felt unworthy, unqualified, lacking in strength and ability. Upon closer examination, however, that seems to be the common theme throughout many of the Bible stories. Many of the people that God singled out and used to fulfill His purpose were not who we would expect Him to choose. These were no noble, hearty, natural born leaders that God chose.

Gideon. His response to God was, “How can I save Israel? My clan is the weakest in Manaseh, and I am the least in my family.” His clan wasn’t ONE OF the weakest, it was THE weakest!

Moses. He answered, “Who am I that I should go to Pharaoh and bring the Israelites out of Egypt? … What if they don’t listen to me or believe me? … I am not an eloquent speaker, I am slow of speech and tongue! … Please send someone else to do it.”

David. Again, he was the youngest, least important member of his family. He was so unimportant that he wasn’t even presented when Samuel came in search of God’s chosen king over Israel. David’s father Jesse presented only his strongest most robust sons – obvious leaders. Further evidence that God’s idea of a person of strength is NOT ours. Nor was David of exemplary moral character as time went on. He committed adultery and murder!! Why would God have bothered with a man like this? I believe it is because when all was said and done, David had a repentant heart. Despite his human inequities, he was a man of God.

In searching through the Bible this morning to find exact reference to these stories I was only casually familiar with, I was humbled. I am in no way putting myself in the same category as these Biblical greats, but I am putting myself in the same category of being on the receiving end of God’s grace and mercy. Unqualified, ill-prepared, self-absorbed, sarcastic, and even a bit of a recluse, God seems to have seen something else in me that I never could have imagined. I am proof that you do NOT have to be in perfect spiritual condition to be accepted, chosen and loved by a mighty, mighty God.

But being a Christ follower must not be any fun, perhaps you imagine (as I once did). What fun is it if you have to be good, nice and perfect all the time? That life style is reserved for people like judgmental Church Lady on Saturday Night Live…

I didn’t want to be like that!! (eyes rolling)!! That is what I thought for much of my life. But… As it turns out, that’s not at all the case. No, I don’t partake in many of the activities I once thought were the funnest thing(s) in the world anymore, but I assure it’s not out of guilt or obligation. I’m just not interested in them anymore. I look at it like this: there was once a time in my life that I could have spent the entire morning and afternoon playing with Barbie dolls. As I grew older I became interested in other things. That wasn’t really entertaining anymore. There’s never been a time within the past 30 years that I longed to go back to that life of playing Barbies. There are way better things to occupy my time with! I don’t have to be perfect. I don’t have to be pre-qualified. I don’t have to be strong. I don’t have to be the epitome of morality. All I have to do is say, “Yes, Lord!” With faith and hope I accept and receive God’s grace and mercy. My family’s circumstances are certainly not easy right now by any stretch of the imagination, but they are bearable with God either walking beside us or carrying us when we can’t walk on our own.

Those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
(Isaiah 40:31 NIV)

For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that no one can boast. For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.
(Ephesians 2:8-10 NIV)

Nora – 87 Days Old

Posted on July 13, 2012 by aleisa

Stay tuned for a second post for Day 87. In the mean time, here are some sweet pictures from today and even a couple if videos by special request 😉

Mmmmmilkiesssssssss....

I discovered my mobile today. It was so interesting I could hardly take my eyes off of it!!

Be strong and take heart, all you who hope in the Lord.
(Psalm 31:24)

Nora – 86 Days Old

Posted on July 12, 2012 by aleisa

By next Thursday we will have an answer as to whether or not Nora is eligible for heart surgery. There is a new issue with her heart that needs to remain stable and not worsen for our cardiologist to give the official green light. Another echo is scheduled for Thursday of next week.

While Nora was contentedly sipping on some milkies during her echo this morning I was frantically searching the room for some sort of God hug. No brightly colored 3 birds border in this room… But wait… Could it be??? My heart fluttered like I’d just received a note from a childhood friend, “HE LIKES YOU!!”

There on the wall, partially hidden by machines were my 3 birds. It was a series of 3 paintings by Mackenzie Thorpe in a single frame. Three chickens, but 3 birds no less!! I swallowed hard at the lump in my throat, trying to retain the tears welling up in my eyes. There is God again, who cares SOOO much about me. I surmise that God could just leave it up to us to be the ones to choose to believe in Him — or not. But that He would continue to send me these little hints of His great love for me is so, so incredible. How could I ever possibly doubt His presence?? Could it be that He’s been sending me love notes my whole life, but I was just too busy and wrapped up in my own little world to notice?

I’m so so relieved that today is OVER. I am actually in bed, I’m still breathing, and I fully trust in God’s plan here. I usually go to bed in a much better state of mind than when I wake up. In the mornings as soon as I open my eyes everything comes crashing at me like a bursted dam. My thoughts are reeling and I want to pull the covers up over my head. The whole day stands there in all of its formidableness, barely begun and I am already wishing it away. It takes the whole day to get my thoughts, my outlook, and perspective back into sync with God’s.

I saw a great quote today that said, “When a train goes through a tunnel and it gets dark, you don’t throw away the ticket and jump off. You sit still and trust the engineer!”

I can’t see an end to this tunnel we’re in right now, but I’ll be right here in my seat waiting for that glimmer of sunlight — ticket in hand, trusting my engineer.

For I know the plans I have for you,” declares the Lord , “plans to prosper you and not to harm you, plans to give you hope and a future.
(Jeremiah 29:11 NIV)

Nora – 85 Days Old

Posted on July 11, 2012 by aleisa

I’m so thankful when days like these come to an end! Today’s visit with the geneticist at Children’s sounded promising – although we won’t have any definitive answers until tomorrow’s visit. I’m afraid of getting my hopes up too high only to have the floor drop out from under us again. After an overview today, the geneticist did say that Nora is a superstar simply because she is able to eat on her own.

Yeah, I like the milkies, alright!

Being able to eat on her own greatly increases the probability of a successful surgery! She does not appear to be in any discomfort (other than gaseousness). She’s alert, strong, gaining weight, doing everything she’s supposed to. Okay, yes. My hopes are UP!! It would be so different if Nora were sickly, not gaining weight, generally struggling. In no way would we pursue prolonging any pain and suffering for our own selfish desires of having her around.

That’s the big news of today. I am physically and emotionally drained and have to prepare for another day of it bright and early tomorrow!

Here are pictures from today:

Goodnight and THANK YOU for the blanket of peace you’ve prayed upon us.

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)

Nora – TWELVE WEEKS OLD

Posted on July 10, 2012 by aleisa

I’ve regained my balance and found my footing again. Yes, we still have a couple days of testing in front of us. Thursday is THE DAY that we will get the answer on whether or not Nora is a candidate for heart surgery. I no longer allow myself to imagine how I’ll react to either scenario – when I do, I can barely breathe, my own heart starts pounding as if though it’s about to take off into orbit. Any joy in the present moment is officially stolen. I will deal with what ever answer we get WHEN we get it — not now. Staying focused on God is not always easy amidst such circumstances, especially for someone who is easily distracted such as myself. If I’m not careful, I can be whisked away in a turmoil of negative thinking. I can end up feeling so shamefully sorry for myself, somehow believing that I am the first and only person to ever go through such a trying time, and why would God do this to me, blah, blah, blah. I’d been so spoiled for much of my life, blessed with awesome parents, the entire family gets along and truly enjoys each other’s company, good health, incredible hubzbind, precious children, surrounded by a multitude of fabulous friends, etc., etc., etc! For awhile I even had a little sparrow fluttering around with me from room to room as if though I were some kind of Disney princess! Looking back, I may as well have lived in a doll house. One thing that has been made abundantly clear through Nora is that I STILL HAVE all of these blessings. The trisomy 18 diagnosis has not overshadowed or obliterated any of the beauty in my life. If anything, it has amplified it. The amount of prayers going up for us and the acts of kindness mentioned in yesterday’s post are the sweetest icing on my already delicious cake. How could I have ever tasted such sweetness, but not for Nora? I might have just had cake for the rest of my life, which would have been fine! But how much better it tastes with the icing.

Sleepy little inch worm

Greta built a fort for her and Nora. The pink sign says: NO BOYS ALLOD

Aaaaaaahhhh!!! Warm swimmies!!!

True dat.

(I apologize for not linking the blog updates to Facebook over the past couple of days. Our internet has been down for the past day and a half. While I can update the blog relatively easy from my phone – it’s difficult to put a link on the Praying for Nora page for some reason. I try to get an update in at the end of each day – even if it’s just a couple of pictures. If you don’t see a link on FB – know that you can always go directly to www.noraroseyusko.com.)

All things work together for good to them that love God.
(Romans 8:28)

Nora – 83 Days Old

Posted on July 9, 2012 by aleisa

I am truly blessed by so many people who have stepped forth to make these days so much more bearable. You’ve entertained my big kids, enabling them to have a fun and memorable summer vacation. You’ve cuddled with my tiny kid so I could go out with my husband and/or my big kids. You’ve spent countless nights or even just one night with Nora so we could sleep knowing she’d be safe. You’ve taken amazing photographs that we’ll treasure forever. You’ve sent random cards and notes of kindness and encouragement just when we needed them most. You’ve cooked meals for us, brought us lunch and even breakfast. You’ve cleaned our house. You’ve brought in our garbage cans. You’ve sent or brought us flowers to liven up our home. You’ve sent beautiful, sweet, thoughtful, and adorable gifts. You’ve offered me advice with your medical background. You’ve set up fund raisers. You’ve participated in fundraisers. You’ve brought me coffee. You’ve brought me ice cream. You’ve made donations. You’ve let us know we’re not alone. You’ve showed up with a hug and a shoulder to cry on. You’ve called just to say hello, to make me laugh or to give me encouragement. You’ve organized and participated in a prayer ambush. You’ve followed along with us on our journey, even if silently. Best yet, you’ve PRAYED for us. To reflect on all of this brings tears to my eyes. I am so very thankful for each and every one of you!

A couple hours at the pool today was completely revitalizing. Not to mention my first time in a pool this summer!! Aaahh!!

I had so much fun playing “hiney biter” with G & G (me chasing them around in the water with my long hair over my face for extra added scary effect). It was beautiful to see them actually playing nicely with each other instead of teasing and fighting!! Thank you, Amanda C. for allowing that to happen!

Even when I do get out (which I’ve suddenly been able to do a lot of lately), I CAN’T WAIT to get back to my little cuddle bug!! She’s always got loves and cuddles for Mommy waiting! Mmmm. This evening just Nora and I went on a little walk.

I love to listen to birdies singing!

Mom? Dad? What's up with our lawn?? I think it might like to order some waters. Just sayin...

How good and pleasant it is
when God’s people live together in unity!
(Psalm 133:1 NIV)

Nora – 82 Days Old

Posted on July 8, 2012 by aleisa

Lazy, restful Sunday started out similarly to the other mornings over the past 8 days–anxiety filled. However, I didn’t have much time to lay in bed to nurture the fears and worries on account of having woken up late to relieve Kate R. & Emma of Night Time Nora Duty.

While the mornings are still a little difficult, I feel like I am in a much better place emotionally than I had been. THANK YOU for your prayers and your messages, emails, comments, posts reminding me of God’s goodness.

Post bath relaxations

He grants peace to your borders
and satisfies you with the finest of wheat.
(Psalm 147:14 NIV)

Nora – 81 Days Old

Posted on July 7, 2012 by aleisa

It was a long, busy, but mostly fun day today. Greta cuddled up next to me this morning and asked if we could have a Mommy / Greta day. Ordinarily I would have let laundry, and the act of relocating a thousands different objects from room to room take precedence — because it really needed to be done. But today my recently attained life skill of enjoying the things that REALLY matter kicked in and I left it all behind. Greta and I set out to IKEA! Swedish meatballs and some lingenberry sauce sounded delicious to both of us!

Also while we were there we picked up a few things. I needed an Expedit for the basement with a few Näsums, a pair of Lendas for the kitchen and family room. We also decided to get a Gosa Pinja for Daddy, a Spöka for Gavin (one for Greta too) and a Leka for Nora. I saw a beautiful Söder, but that will have to wait for another day. (Now you have to go to ikea.com to decode everything!)

It was another nice respite, but this time with my big girl. I loved laughing and being silly with her. She has the greatest sense of humor! I hate that I’ve been so busy that I’ve barely taken the time to really, really listen to her. Gavin too. They both love randomness. I can’t wait to see what they’re going to be like when they’re older, but need to remember to enjoy them in the here and now. They’re growing up so incredibly fast.

Meanwhile, back at home the mens were holding down the fort… and baby bottles.

Where's my muthr???

We did actually venture off to church this evening too! We met Nana & Papa there and they graciously whisked Nora off to the cry room (not that she was crying, but just incase) so William and I could sit out in the auditorium. Ordinarily I would have put her in the infant (or special needs) nursery as I did with the other kids, but if she were to get sick, even just a seemingly harmless little cold, it could potentially be very, very, very serious or even deadly. So we keep her with us, even just for peace of mind.

The message at church was a good one for me to hear. An analogy was made of God as a chef in a 5 star restaurant and us as the picky eaters. We want the meal, but we have all these conditions and expectations. The waiter is sent back to the kitchen with our order drastically altered from its original and intended state. “I’ll have the wood fired branzino, but I’d like that deep fried instead of wood fired… and a side of Cheez-Wiz too if you have that.” Imagine the insult to the chef!! Here is this marvelous creation that he worked on getting just right. It IS just right and our senses would be delighted if we’d even so much as bothered to accept it as it was! “WHAT,” yells the chef, “makes this person think they can do a better job back here in the kitchen!!!!???” —- Yes, I stand corrected, Lord!! Fix this as only you know how.

Trust in the Lord with all your heart and lean not on your own understanding.
(Proverbs 3:5)

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A Journey of Unconditional Love

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