Nora – 38 Days Old

Today’s visit to Children’s Hospital had an assortment of highlights and lowlights. We were told that the possibility of Nora’s heart causing her oxygen levels to drop is not likely. It is now being suggested that it is her lungs that are causing the problems. That news has had me in a funk for much of the day, or perhaps the way it was presented to us.

The highlight of our visit were a couple of people who recognized us from our blog. One was a sweet nurse and the other was the sweet mother of an adorable little boy who was boarding the elevator we were on. Our appointment had ended and we were anxious to get back home. I was feeling a little discouraged and sensitive there in the elevator. The elevator stopped on a floor to let some more passengers on. As the doors opened, I was met with the beaming smile of a woman who excitedly exclaimed, “Nora Rose!!” I had never met her before. When she introduced herself I immediately recognized her name as a new friend on Facebook. She had mentioned in her own post  earlier that they too would be there at the hospital. That moment was another God hug. She explained in a message to me later in the day that she too had been feeling a little down. The chance meeting reminded her of God’s presence in our lives and the power of our faith. She worried that maybe she had overstepped her bounds by saying something to us. I assured her that was not at all the case, in fact, far from it!! I love to meet people who are following the blog and I promise we’re very approachable!

If you are familiar with Cincinnati Children’s Hospital you know that it is not a small place! Of all of the departments, hallways, corridors, rooms and elevators – you mean to tell me that our brief but substantial meeting was a coincidence??? We both needed that special moment. God knew that and cares about us so much that he would go out of His way to ensure that our paths crossed. Thank you, God!

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Carry each other’s burdens, and in this way you will fulfill the law of Christ. (Galatians 6:2 NIV)

Nora – 37 Days Old

I made a quick trip to Target this evening for some miscellaneous odds and ends that we needed. My Mom was so kind as to stay with Nora while I went out. The rest of the family were away at various extracurricular activities. While in Target I was recalling back to Day 52, how distraught I had become over the sound of a newborn crying. I was so saddened that day by the possibility of never hearing my own newborn’s cry. But there I was this evening, very familiar with little Nora’s cry, and even shopping for her. My heart was smiling so big!!

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SOMETIMES God’s will coincides with our hopes and prayers and we do get the answer(s) we were looking for. Then there are the times when it seems like God has all but abandoned us. We find ourselves in the middle of a living nightmare. I feel so undeservedly blessed to have Nora here with us. To date, God’s will has coincided with what I have asked, begged, pleaded and prayed for (even though I might not have known what the heck I wanted in the beginning). Through this whole experience I have learned two major life changing concepts. The first is that worrying is completely pointless. The second is that God makes beautiful things from dust. As long as we’re here on this earth, God will take each tragedy, each disaster and calamity and turn it into something that will glorify Him! The “tragedy” of Nora’s diagnosis has been transformed into something beyond incredible!! This doesn’t just apply to me. It applies to everyone who believes!

The Spirit of the Sovereign Lord  is on me,
because the Lord  has anointed me
to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
to proclaim freedom for the captives
and release from darkness for the prisoners, to proclaim the year of the Lord ‘s favor
and the day of vengeance of our God,
to comfort all who mourn, and provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes,
the oil of joy
instead of mourning,
and a garment of praise
instead of a spirit of despair.
They will be called oaks of righteousness,
a planting of the Lord
for the display of his splendor.
(Isaiah 61:1-3 NIV)

This is one of my very favorite songs and goes along with this post’s topic. I had the awesome opportunity to see this band in concert while I was pregnant with Nora!

Nora – 36 Days Old

Today was a day of great adventure! Nora went to “the beach” thanks to a friend of ours who brought “the ocean” (a bag of sand and a bottle of salt water) back from a recent vacation. Decked out in her fancy monkey bikini Nora enjoyed a delicious milkies cocktail on the balmy shoreline. She accidentally lost her bikini bottoms on her way out to catch some waves. Terribly embarrassing, to say the least!!! The ocean was a little chilly for her liking so a soak in her “lukewarm tub” was in order afterward. (Babies don’t care much for hot tubs.)

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I’m so thankful for our ability to laugh even throughout some of our darkest days and moments. God gave us the ability to laugh and smile — what a cool gift! There is great truth in the saying about laughter being the best medicine. I love laughing, I love making people laugh and I’m drawn to people with a great sense of humor. That is one of the many things that attracted me to my sweet husband. His sense of humor is top notch! The medicinal properties of laughter are the infrastructure of our relationship with one another and that of our extended families. It’s safe to say that William and I both originated from a long line of silliness. I love to see it shine forth from our children, even tiny little Nora who we’ve embodied with a funny personality all of her own.

For instance, look what she decided to wear to breakfast this morning.

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As if we’ve got some kind of contest going!! So, whatever!! *wink* (You can “friend” her in the Praying For Nora Rose group on facebook, she wants me to mention.)

Silliness aside, we are incredibly blessed to have Nora in our family – I can’t say that ENOUGH. I had an amazing phone conversation with a woman whose little girl also has trisomy 18. Her little girl just turned FOUR! It was a pleasure and an honor to talk with her today. I have a renewed hope as it pertains to Nora — that she too will defy everything that has been suggested about children with this condition. Every life is precious, meaningful and worth fighting for, children with extra chromosomes included!!!

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“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)

Nora – 34 Days Old

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I smile to think of how Nora is fulfilling her mission. She has indeed made the world a better place, simply by being born. I thank God for instilling me with my mission many months even before Nora’s birth. He endowed me with an affection for expressing myself through writing specifically for this purpose — unbeknownst to me!

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Nora and I spent most of the day in the family room sun bathing and cuddling. I love to see how her periods of cognizance seem to be increasing (which you would never guess from the series of sleepy pictures from today). One of her tear ducts is clogged again. Hopefully that will be cleared up soon. Her poor little eye looks so pathetic!

We did make it out to the mailbox this afternoon. She seemed to enjoy the cool front that was blowing in. As soon as we got back she expressed her displeasure at not having her milkies immediately at her disposal. What was Mommy thinking!!!??? She’s been eating fabulously and has no reservations about letting us know when she’s hungry! I’m excited to see what she weighs in at this week!

Because we loved you so much, we were delighted to share with you not only the gospel of God but our lives as well. (1 Thessalonians 2:8 NIV)

Nora – 33 Days Old

I read a quote yesterday on a Caring Bridge page for a 5 year old little boy who has been waging a lengthy battle against Leukemia. His amazing mother included a quote which read, “What screws us up most in life is the picture in our head of how it was supposed to be.” In our situation, and certainly with theirs, it is easy to let the thoughts of “what should have been” drag us down and ultimately consume us — if we let them. We have the choice to be miserable or to believe positively. It could be argued that positive thinking is much easier said than done, especially in the face of devastating circumstances. But it is through faith and surrender that we come to realize that we aren’t the ones in control. Our idea of “what was supposed to be” often doesn’t acquiesce with God’s grand plan for us. In our willingness to surrender and trust God we will someday discover that God had something better in store for us. It most likely will not be immediately apparent. It could take several many years, or maybe not even in this lifetime. Being privy to this knowledge enables us to stop torturing ourselves and instead enjoy the little moments of happiness in each day as it comes.

Here are some little moments of happiness from my day:

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The Lord is my strength and my shield;
my heart trusts in him, and he helps me.
My heart leaps for joy,
and with my song I praise him. (Psalm 28:7 NIV)

Nora – 32 Days Old

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Laid back sippin' on milkies!

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Busy being sweet and cute!

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Evening walk with Mommy

He tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young. (Isaiah 40:11 NIV)