I heard a great analogy the other day between our lives and a painting. Just as in a painting, our lives, if you look at them closely you can see each brush stroke. In some instances you can even see the foundation sketch from beneath the paint. Up close it doesn’t seem to make much sense. It’s messy, chaotic, and clashing. But the further you step back, the more beautiful everything is. You start to see how each brush stroke (each life situation) works together to form a big picture. Were you to remove some of those brush strokes that seemed ugly close up, you would alter the image, changing it from its intended beauty. (Thanks for that neat analogy, Chris!)
God continues to place people in our lives to help us along on our journey. They too make up some of the brush strokes helping to form the great picture. I had mentioned a few days ago that I had spoken with a woman who has an adorable little girl who is now 4 years old with trisomy 18. I didn’t want to mention her by name without first asking her permission. I had the pleasure and honor of speaking with Karen Santorum over the phone, now a couple of times. My Mom shared the blog on her FB page. A few days later I was so excited to hear that she was interested in talking with me!! She has been a wealth of information, sharing her knowledge as it pertains to Bella’s care, and potentially Nora’s as well. I am so very grateful that she would take the time from her busy life to offer me much needed advice and to listen to my concerns. After my initial astonishment that I was actually on the phone with Karen Santorum, it was like I was just simply talking with a good friend! Thank you from the bottom of my heart, Karen! I look so forward to talking with you more!
Here are some pictures from today.
“MILKIES!!!!!!!!!”
Nora had another outing today to Nana & Papa’s house to wish Papa a Happy belated Birthday! She did very well on the way over and back and seemed to enjoy the love and attention from everyone. She is such a beautiful gift to all of us. God is good.
Trust in the Lord with all your heart
and lean not on your own understanding (Proverbs 3:5 NIV)
Rewind to May 1997. Just home from work and ready to take on the weekend, my life was suddenly and forever changed. My sister Sarah sat on the back porch gazing lovingly into a box labeled as fax machine paper — obviously not at fax paper. Sarah had a reputation for bringing home orphaned or needy pets. When I peeked inside I saw a tiny bright yellow beak peeking out from a bundled blue towel. Its eyes weren’t even opened yet. To make a very long and beautiful story short, I took over the care of that helpless naked baby bird with the intention of releasing her once she was able to fly and eat on her own. However, she had a deformity on one of her feet which caused her rear toe to point forward. Her life span out in the wild would potentially be shortened because of this condition. As her feathers gradually appeared we determined that “it” was a “lowly” little house sparrow. A female that I ended up naming Ava.
I was informed that there are no protection ordinances for house sparrows because they are not native to the United States. Legally I could keep her as a pet. She went everywhere with me, especially in her early years when I had to feed her with a syringe every 20 minutes for 16 hours a day. (Fortunately birds sleep at night!) Working for a small family owned business I was able to bring Ava to work with me every day. I know people thought I was crazy and wondered why the heck I was even bothering. In the beginning I too wondered if my efforts were futile. She was such a fragile little thing! But I persevered and so did she. As she grew older she continued to come to work with me every day. She went on vacations with me as far as 10 hours away by car. The only time she spent in her cage was when she was traveling, at work with me or if I had to step out for awhile. Otherwise she had free reign of my bedroom when I still lived at home, and then free reign of my apartment when I moved out. At night she slept in a little blue fleece tent on a hook next to my bed.
When she was tired, she knew to fly in there and she expected me to be quiet after she had done so. It was always a source of amusement to who ever I was on the phone with when I had to apologize on behalf of my sparrow “yelling” at me in the background. I could go on and on and on about all of Ava’s endearing little quirks, her “nests” that she’d build, her sun “comas”, her bird baths, her “clicking” at us, her bird songs. This bird had so much personality! For nine incredible years Ava lived with me and then “us” after William and I got married in 2001. She was our first “baby” together and he loved her just as much as I did.
As Gavin and Greta were born into our family they thought it was completely normal to have a sparrow flying around their house sharing breakfast with them. She was just another family member. She passed away in early January of 2007 leaving behind a huge impression on our hearts and maybe an invitation for God to recognize that we’d be the perfect family for another special little “bird”.
Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. (Luke 12:6 NIV)
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!
Carry each other’s burdens, and in this way you will fulfill the law of Christ. (Galatians 6:2 NIV)
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!!
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!
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.)
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.
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!!!
“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)
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!
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)
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:
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)
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)
This wide-eyed little stinker is demanding every bit of Mommy’s attention tonight!
I was in the process of writing up a post, but had to put it down for some precious snuggling. Check back tomorrow on this same day’s posting!
(Nora is doing phenomenal!)
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We now return to our regularly scheduled blog post:
There were so many instances along the way that God hinted and prepared us for what was to come. Some weren’t always evident in the moment, others were blatantly obvious, yet I attributed them to my overactive imagination or coincidence. Looking back I see now that me and/or my imagination had nothing to do with any of it and coincidences don’t exist. They were subtle and not so subtle glimmers of hope, magnificent illustrations of God’s love and tenderness, poignant reminders of His presence through it all.
Shortly after I found out I was pregnant I had a word stuck in my head. You know how that happens every so often – you keep thinking the same word over and over again, or repeating it out loud until it sounds weird. The word I had stuck in my head was “trisomy”. I had no idea how the word ended up lingering in my mind. I couldn’t remember reading it or hearing it anywhere. In fact, I did not know what it meant and had to look it up. “An abnormality characterized by the presence of an additional chromosome.” That sort of freaked me out, being newly pregnant. I remember my exact thought was, “Wouldn’t THAT be weird if that really happened… But good thing I only have “healthy”, “perfect” babies. Certainly that wouldn’t happen to US!!” There was no way of knowing at that time what was in store for us, but that made me familiar with the term. I knew what the word meant.
Greta’s dream, a little over a week after we received the news of Nora’s diagnosis, “Mommy and Daddy were feeding a baby on the couch, and the baby was a girl.” That gives me literal, physical chills to recall that morning. Perfect timing, God delivering us that beautiful imagery through our little girl. That seemed a little uncanny and really did offer us hope, but part of me still persuaded, “Oh, it was just a dream. Don’t get your hopes up.” No way of knowing then just how prophetic it really truly was!
At the end of January, while we were still in the process of digesting the grim news, we had friends who brought dinner to us. With Mardi Gras season upon us, one of our friends brought a king cake for dessert. For those of you unfortunate enough to be unfamiliar with the king cake, it is a dangerously delicious cinnamon pastry smothered in icing and yellow, green and purple sugar. Inside of the cake is a little naked baby trinket. Wikipedia explains, “…the person who gets the piece of cake with the trinket has various privileges and obligations.” The whole evening passed without anyone finding the baby. There was only a little bit of cake left over. I allowed Gavin and Greta each a slice for dessert the next evening. “No one has found the baby yet!” I reminded them, as I indulged in my own slice of deliciousness – the LAST piece. A couple of forkfulls later, I discovered the baby trinket. I quietly and sadly smiled at it in the palm of my hand thinking, “If only I can REALLY have the baby…” (Ask, and you shall receive!). There was no way of knowing then just how privileged we were to become!
Several others shared dreams they had about Nora before she was born. One friend dreamt that the baby would be a girl (before we’d found out her gender). The dream was very vivid and foretold that we’d be bringing her home, that she was very strong and very beautiful. (check) (check) (check). Nora appeared in the dream as blonde haired and blue eyed. Obviously her hair is dark now, but does appear to be lightening! Her eyes are indeed blue. The rest of the dream indicated that Nora’s heart was healed, possibly through a surgery. (!!!)
Nora appeared in another friend’s dream as a beautiful baby, and in her aunt’s dream she was a very, very good baby, never fussy! I expected Nora to be beautiful, but if you ever knew Gavin and/or Greta as infants “good” babies don’t exactly run in our family. Gavin and Greta each put us through a tumultuous 8 month crying jag. Lo and behold we actually got a “friendly” baby this time that isn’t intent on driving her parents to the brink of insanity! *wink* She only fusses when she’s hungry or has air in her belly.
God continues to minister to us even after Nora’s birth. The goose on the roof, the rainbows, the nurse sent in at just the perfect minute, the strangers who approach us to let us know we’re in their prayers, my husband’s reassuring kisses, the multitude of people bringing us meals, the nurses and others volunteering their nights to allow us much needed sleep, and all of the sweet, encouraging cards, notes and letters. Whether you realize it or not, you are acting as God’s hands and feet. Thank you for being receptive to that gentle nudge from the Holy Spirit. You are tangible evidence of a compassionate, gracious, loving God.
“All this I have spoken while still with you. But the Counselor, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you. Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” (John 14: 26-27)
iwillcarryyou 