It was a good day today, but I’m glad that it has come to an end. Nora was a little fussier than usual, possibly on account of her stuffy nose and not being able to breathe so well. Some saline drops seem to have helped out considerably and she’s sound asleep right next to me breathing comfortably. When Nora is fussy, she likes to be held and rocked, which means I’m not able to get much else done around here. With an 8-year-old and a 6-year-old running amok, you can only imagine what condition the house was in this afternoon. Gavin has been grounded from all electronic devices for 2 weeks for hitting Greta and because I really didn’t think that one out too clearly when I involuntarily screamed the punishing decree over my shoulder from the passenger’s seat.
We go bright and early for an appointment with the pulmonary specialist at Children’s Hospital. Again I’m asking for prayers for answers and solutions in regard to Nora’s little lungs.
Here are some pictures of my sweet little thing from today:
“Hmmm… Should I order milkies… or the milkies… “
“Yes, I think I’ll have the milkies, please.”
I have to apologize to so many people – I discovered this subfolder within my Messages folder on Facebook called “Other”. Just out of curiosity I clicked on that last month and discovered messages from people all the way back from September of last year!! Doh! Now I just have to remember to check in that folder every so often so people don’t write me off as some kind of jerk! Among those messages was one from a woman who had suffered the unthinkable loss of triplets. Her little girl succumbed to trisomy 18 while still in the womb at 16 weeks. Her little boys were born at 25 weeks, one of which lived for 44 days, the other 66 days. Despite what she had been through only 3 years ago, she was writing to offer me encouragement. She included a beautiful analogy of God’s goodness with a reminder that HIS ways and timing aren’t always what we want and when we want it. In her letter she shared with me something she had written shortly after she lost her triplets. I asked her if I could share that on the blog and she was agreeable. Her son Noah was almost 2 at the time:
Noah is on his tiptoes, reaching for the doorknob to the pantry, crying for a “key-key” (his word for ‘cookie’). His ears are deaf to my “not now – dinner is in 20 minutes.” His single focus, the cookie, is at the heart of his will. There is no way in his 22 month old brain he can comprehend why a fistful of graham crackers does not a balanced dinner make. Yet, I try over the pleas, to explain that if he would be patient for a few more minutes, what he will be getting is so much better for him than a “key-key”.
In the same way we cannot understand what our Heavenly Father has in store for us in the future. Our immature wills can only focus on the here-and-now, and what we want immediately. I prayed for days and weeks at Wyatt and Jack’s bedsides in the NICU, crying for God to give me what I wanted – a baby boy to take home. I bargained, “I understand they had a rough, early start, and I am willing to take on a child with special needs if you will just get them out of the NICU and let them come home.” I bargained further, “I understand Wyatt had heart problems and You needed him home with You…PLEASE just let Jack get better.” Yet, God had a bigger plan for Wyatt and for Jack. God has a bigger plan for me, Greg and Noah. While I’m focused on the here-and-now, pulling on the pantry door for a “key key,” God is planning an amazing, soul-nourishing feast for us. Until then, I cling to my faith and the promise that “in ALL things, God works for the good of those who love Him and who have been called according to His purpose.” (Romans 8:28)
Thank you so much, Kelly for sharing that with me and for allowing me to share that here. I get a big lump in my throat every time I read it. God can be so misunderstood by us mere humans, just as Noah misunderstood you. God LOVES us. He’s not up there / out there with a big lightning bolt in his hand waiting for us to screw up and then throw it down at us to make our lives miserable. Nor are we random ants under the magnifying glass on a hot summer day. THERE IS A BIGGER PICTURE! Unfortunately, we don’t always realize that. Even if we do “get” that – we often need reminding. I know I do!
What ever you are going through in your lives, trust that God loves you and that he has great plans for you. I promise, promise, promise you that your life will be much less burdensome when you change your way of thinking.
No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him. (1Corinthians 2:9)
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)
P.S. I hope I didn’t keep you up too late tonight, sweet Ethel! I’m on night shift tonight and had lots of very precious interruptions! 😉
iwillcarryyou 
HI ALEISA, NEVER TOO LATE TO READ ABOUT YOUR FAMILY AND LITTLE NORA ROSE. READING YOUR BLOGS EACH NIGHT JUST MAKES MY DAY. I FEEL AS THOUGH I KNOW YOUR FAMILY PERSONALLY, AND PRAY SOME DAY I MIGHT GET TO MEET YOU LIKE THE LADY AT THE HOSPITAL. NORA ALWAYS LOOK SO PRETTY, YOU DRESS HER SO CUTE. WE ALL HAVE DAYS THAT WE ARE A LITTLE FUSSY AND NEED A LITTLE EXTRA LOVE AND ATTENTION. I TALK ABOUT YOUR FAMILY SO MUCH THAT WHEN WE HAVE A FAMILY GET TOGETHER NOW, EVERYONE KNOWS WHO I AM TALKING ABOUT AND WANTS TO KNOW HOW LITTLE NORA AND THE REST OF THE FAMILY IS DOING. OF COURSE I AM MORE THAN WILLING TO UPDATE THEM. MY WHOLE FAMILY IS PRAYING FOR NORA AND THE REST OF THE FAMILY. THANK YOU AGAIN FOR THE UPDATES EACH DAY. I KNOW YOU ARE SO BUSY, BUT ALWAYS TAKE TIME TO DO THIS FOR ALL OF US. GUESS I WILL DO WHAT THE REST OF MY FAMILY IS DOING, GO NIGHT, NIGHT. LOVE TO ALL OF YOU, GOOD NIGHT, AND GOD BLESS.
Hi Ethel, my grandmas name was Ethel and you remind me of her. Where are you from? I always like reading your post and love your caps.
Terri
Another beautiful post! And your words are so true! God is our Father and knows what’s best, even when we think “it’s so stupid…” If only we would draw the parallel in our own lives with our own kids and how they feel about our rules. Ever since I began to see God this way, it has gotten much easier to take a step back and say “Ok…. you know what is best” (even when I do NOT like it). Brilliant analogy.
i totally agree with Ethel, thanks so much for updating us and letting everyone in on your family, I must read Nora’s updates every night before bed and then I can pray for the specifics that you mentioned in your post! This little baby…. 🙂
In tears…again. So heartbroken for Kelly’s great loss yet so thankful for her beautiful eternal outlook on it all. I read this at exactly the time I needed to at 430 in the morning while I was having a gut wrenching conversation with God about an impending court situation that will greatly affect the amount of time one way or the other, that I get to spend with my son. I do trust fully that He is in complete control and in His total love for Chase and I and I “get” it…..but I really needed that reminder this morning. Thank you for including that today. What a beautiful picture of us not always understanding God’s goodness for us. Saying some prayers for sweet Nora’s lungs.
What a wonderful post, and God Bless Kelly and her family. You’re all in my prayers for your appt. this morning!
Couldnt have said it better 🙂
Good luck today Nora! I am hoping and praying for good news!
Incredible post today, Aleisa, brought my soul to tears because of its genuine depth. Thank you and I’m praying for pulmonary answers at Children’s today!!! All of our love and support!!!
I read your posts everyday and include your family in my prayers! Good luck at the Pulmonologist! God Bless your family!!
what a beautiful message!
I hope Ms. Nora’s nose feels better today…good luck at the appointment! One day you’ll learn of “chocolate milkies”! Whoa!
Thanks for sharing such a beautiful story of faith. 🙂
Such a great post! Something we all need to be reminded of! I love the comparison to a toddler wanting a cookie! I know I have acted like that with God. (more often than I care to admit!). I also loved your comment about Gavin being grounded and not realizing the impact of that punishment!! I had a lovely 1.5 hour shopping trip with my three hooligans yesterday and their punishment at the end was not being able to pick out popscicles due to poor behavior. Hubby wanted to know why they weren’t grounded from more and I said “because I’m the one stuck home with them all day!!” Love to you, Nora and the family!
Oh my goodness!! Thank you! Praying for sweet Nora Rose’s lungs!
What an encouragement to read this!!! God always uses you to encourage SO much through what you are going through. And the pictures of Nora continue to be priceless. Thank you!!!
Your blog is such an encouragement to me. My son and beautiful daughter in law are carrying to term a little girl with Trisomy 13. They have already been told she has many of the problems associated with this, however they are trusting that God has a plan for Adalyn and for them in all of this. I know Erin(d-i-l) is following Nora too, I am going to make sure she reads that message. How amazing is our God, who gives us encouragement just when we need it!