Monday was a particularly difficult day. God must’ve known that and had it pre-arranged for Rachelle to meet with me that morning. What was intended to be a meeting to go over Nora’s therapies and progress also evolved into a beautiful conversation about God and the trials we are faced with in this life. I fully understand and expect that Nora will not meet the same milestones as other children her age. Her developmental delays are just a part of who she is and I have for the most part expected and accepted that. Yes, there are the moments where I wonder what she would be like if she weren’t hindered by an extra chromosome. If she were a chromosomally typical child, certainly she’d be walking and getting into everything by now. The reality is that she doesn’t have much physical capacity beyond a 3 – 6 month old. Nora wouldn’t be NORA without her extra chromosome. I love her exactly the way she is and I don’t wish her otherwise. As Rachelle was going through the checklist of developmental milestones, I answered, “No, not yet” for many if not most of them. Not that I was getting frustrated or upset that Nora wasn’t yet meeting these milestones, but just incase I was feeling apprehensive Rachelle sweetly pointed out to me, “No, Nora isn’t able to sit up on her own without support, etc. But look at everything else she’s doing!! She can just lay there and sleep while she touches and changes lives by simply being Nora!! Some people will live a full lifespan without checking that off their list once!” Ebullient tears flowed down my cheeks and over my smile as I looked down at that sweet, sweet baby sleeping in her little rocker. Developmentally delayed she may be, but she is strongly and mightily influential beyond her years!
Having been faced with a family health crisis involving one of her own children, Rachelle surmised that it is those things that facilitate the rich and intimate relationship with God, which is something we all long for whether we openly realize it or not. No one hopes and prays that their baby will be born with trisomy 18. No one dreams for the day that they or one of their children or loved ones will get a cancer diagnosis. Those are the things that throw us to the ground, knock the wind out of us and bloody the quintessence of our very being. Those are also the very things that will reveal to us the almighty compassion of our loving God when we turn to Him for comfort. I think back to my childhood when I took a nasty spill on my brand new two-wheeler. Up until that point, I was busy doing my own thing, riding along through life – not thinking too much about my Mom or Dad. The second the bike went down and I hit the pavement I wanted and needed one of them urgently. My anguished cries were answered by my friend’s Dad who ran to the rescue and tenderly carried me up the street to my parents. My parents nursed and dressed my bloody knees and elbows and kissed away my tears. I suppose I could have gotten up off the sidewalk on my own that afternoon. I could have made it back ip the street, washed the blood off of myself and found some Band-aids, I think. Undoubtedly it would have been labored and painful and taken twice as long. I had no skill or knowledge of cleaning and bandaging open wounds. My immature efforts very well could have resulted in infection and recurring issues. I am a self-sufficient adult (for the most part, ahem…), but still very much the vulnerable child that I was then, still very much in need of God’s tender mercies, and occassionally that special person(s) to carry me to His feet when I just can’t get there on my own.
Rachelle’s visit encouraged and refreshed me with the reminder of God’s goodness in preparation for the day that laid ahead. I hoped and prayed to God that I would somehow, someway be able to offer some sort of hope and comfort to Kate Wehner and her husband Ryan as they said goodbye to their daughter Eleanor “Ellie”. I had never been to an infant funeral before, and clenched my teeth that such a thing should ever even have to exist. It just wasn’t fair, I silently cried. While heart wrenching and sad, the funeral mass and burial were such loving tributes to this tiny short life who brought us all together this afternoon. I was so honored to be given a butterfly to release at Ellie’s gravesite. Along with everyone else there in the church and then at the cemetery, I was overcome with sorrow and a very limited context of God’s master plan. I am only capable of guessing what the big picture is, but maybe this is what it took to bring that certain one person to God, thereby securing their eventual transformation into Eternity. That in itself would be enough, but because I know and trust God like I do, I KNOW it is going to be something, probably many, many things more beautiful than any of us could ever surmise. Already Ellie has forged bonds and friendships that I believe will last a lifetime. But for Ellie, I might never have had the opportunity to meet her precious Mommy and the rest of her sweet family. This most certainly isn’t the end, but the beginning of something amazing. I can’t wait to meet you someday, Ellie!
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
The big kids started Circus Camp this week, which was good practice for school hours. They had to be out the door at 8:15 to catch a ride (Thank you, thank you, thank you, Kelly R!!!). Nora had to get used to not having her brudder n sister around, and was so happy to see them when they returned later in the afternoon.
“So… Uh… Where ya been, sister?”
“I’ve been kinda looking around for you all day long, is all…”
“How was everyone’s day? I’m exhausted from being a baby!”
“Will someone pass the milks already? I’m gonna need a baff here in a few minutes.”
(She’s got her feet up on the dinner table… She don’t care!!!)
“DISSSS. Is. What. I. Like.”
And my God will meet all your needs according to the riches of his glory in Christ Jesus.
“G’Morning, Mommy! Shall we go for a walkies?”
It’s a beautiful day in the neighborhood!
If you zoom in really really closely and look just above the light blue spot in the sky you’ll see the 3 birds that flew by right as I was taking the picture! Totally unintentional and cool!
“I tink I need another baff. I’m kinda stinky (kinda stinky).”
“I sure love it when my sister gets home from da circus!”
“Greta n my Kelly help me do some fun things!”
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Nora and I made a quick run to Kroger to get a few things that we needed and because we were bored at home. The weather was uncertain and we had been inside all day waiting for it to rain. We were in and out in the blink of an eye, but Nornor got a little upset on the way home. “I THOUGHT WE WERE GOING SWIMMING!!! THIS ISN’T WHAT I LIKE!!!” she yelled. I rushed her home to the baff with some milks and she was compensated for the misunderstanding.
I can’t stop laughing at this video of Nornor: Norns the Friendly Robot
Nora’s routine cardiology appointment was scheduled for 7:00 this morning. She woke up in good spirits and stayed extraordinarily happy for the duration of the entire visit. Never ever has Nora been known to kick back and relax while the ultrasound tech runs a jellied wand over her chest for almost 30 minutes. Who in the world was this smiley little girl offering happy squeals to the lady peeling electrode stickers off of her chest??? She was so good and incredibly sweet, and then we got the news that her heart function has IMPROVED!!!! Her heart rate is even registering down in the low, low hundreds! That was previously unheard of! Tears of utmost gratitude welled up in my eyes, but I can’t say I was totally surprised. God’s power is infinite and I fully believe in miracles!
I saw a sign (in the literal sense) on the way to the hospital this morning:
Even the crosswalk raised a “hand up” – can I get a AMEN!!
This baby is so cute, I can hardly even stand it ~
“I guess you see how sweet my little heart is then?”
Back home the forecasted rain finally unleashed — but not without a rainbow!
Back yard ~
Front yard ~
“Me n sister shifted to another gear.”
Earlier in the week I found a dreaded ticket under my windshield wiper. I guess I’m going to have to be more careful in the future ~
My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry, because human anger does not produce the righteousness that God desires.
(James 1:19, 20 NIV)
Today was the last day of Circus Camp! We got to attend a SPECTACULAR show! I was so proud of Gavin & Greta!
“Maybe I could go dere next year!?”
“Maybe I can ride a motorcycle across the tightrope!!”
“Or I could ride across the floor in my red chair?” (with her nasal cannula falling out!)
“My sister can help me!”
“Have a great weekend! I love you!”
He himself bore our sins in his body on the cross, so that we might die to sins and live for righteousness; by his wounds you have been healed.
(1 Peter 2:24 NIV)
Pretty Nora has touched many lives…I hope your weekend is great!!!
It is so beautiful to see Greta with Nora. Nora is so lucky to have such a great big sister. You can just see the love between the 2 of them. There is nothing like sisterly love. I have been so blessed reading your blog over the past 2 years. It has brought such an amazing perspective into my life and look at my own relationship with God. Thank you for being so honest and sharing your testimony.
You and your family are so beautiful! Please give Greta a big hug for me.
I had a hard time getting thru the first part of this post as I too lost a daughter to trisomy 18 6 1/2 years ago. You have such a great prescriptive of God and I only wish I had something like this to read when I was going thru the hardest time in my life. I enjoy reading your blogs, sometimes they get me thru the day and remind me every day of Gabrielle and how she touches so many lives in her short 11 hours on this earth. I know she is up there supporting Nora and your family!
So, So, So LOVE this angel face (Nora). You ALL are a cute family! God bless you all and thank you for blogging about the beauty and the trials. She can put a foot up on our table anytime, ha-ha!!
Hi Aleisa. We just returned from being away for a long time and I had to catch up on your blog. I couldn’t stop the tears–that is the most beautifully written and powerful post I’ve ever read. I feel your heartbreak but am in awe at your amazing strength and how you truly put your faith in God. And that sign?! The hand raised?! Awesome!! And, the three birds flying overhead…your rainbow…Nora’s smiles–you are so blessed by God and He’s showing you how much He cares. I know He is so proud of you.
I also wanted to reach out to share how we delivered our pregnancy/Trisomy 18 news with our friends and family because I gave a shout out to you. Thank you again for being the dealmaker for our decision. I’ll never forget it!
Praying for you and Nora every day.
I HAVE TO SAY THE BEGINNING OF THIS BLOG HAD ME IN TEARS. THE WAY YOU EXPRESS YOUR SORROW, YOU HAPPINESS, YOUR STRENGTH THAT IS RECEIVED FROM OUR HEAVENLY FATHER. I SO APPRECIATE ALL YOUR BLOGS THAT YOU HAVE POSTED, AND HAVE TO SAY THAT SOME DAYS THEY ARE WHAT GOT ME THROUGH THE DAY. ALEISA, YOUR FAMILY IS SO BEAUTIFUL AND LOVING. GRETA IS SUCH A WONDERFUL BIG SISTER. SHE SPENDS SO MUCH TIME PLAYING WITH NORA. SHE ALSO IS SO LOVING. I CAN SEE THAT NORA LOVES HER BIG SISTER AND HER BIG BROTHER SOOO MUCH. I SO ENJOYED THE VIDEO, AND I TOO WAS LAUGHING AT GRETA AND NORA. LOVED NORA RESTING HER LITTLE FOOT ON THE TABLE. IT LOOKED LIKE THE BIG KIDS ENJOYED THEIR CIRCUS CAMP. I HAVE NEVER HEARD OF SUCH A CAMP. I LOVE HOW NORA’S HAIR CURLS SO PRETTY. SHE IS ONE BEAUTIFUL LITTLE GIRL. PRAYERS ARE ANSWERED AGAIN FOR NORA’S LITTLE HEART. I KNEW SHE WAS GOING TO SURPRISE THAT DOCTOR AGAIN. PRAISE GOD FOR ALL HE DOES FOR NORA AND HER FANTASTIC FAMILY. I LOVE YOU ALL VERY MUCH AND PRAY THAT NORA KEEPS GETTING STRONGER. LOVE AND PRAYERS ARE ALWAYS GOING YOUR WAY.
Love to all… 😉