Runner

It was a Friday night in March. Embraced by the warmth of my blankets, I lazily scrolled through my newsfeeds, my eyelids growing heavy. I was about to call it a night when a text came through. It was Kim Botto, my dear friend from church who had officiated Nora’s funeral and has helped us through our loss. A family from church had just been dealt the devastating blow of a prenatal trisomy 18 diagnosis. She wrote, “You would be the perfect one to reach out to them.”

I recalled our own first horrible days after Nora’s diagnosis. Although I did not recognize their names or yet know them, my heart broke for this family. I assured Kim I would reach out to Natalie the next day.

As I laid there on into the night I wished I could fast forward time for them to get them through these awful, anxiety-ridden days. Then I recalled the story of a butterfly cocoon from Streams in the Desert from January 9’s page (Jan. 9 was the date we received Nora’s diagnosis!!! Coincidence?!):

“I once kept a bottle-shaped cocoon of an emperor moth for nearly one year. The cocoon was very strange in its construction. The neck of the “bottle” had a narrow opening through which the mature insect forces its way. Therefore the abandoned cocoon is as perfect as one still inhabited, with no tearing of the interwoven fibers having taken place. The great disparity between the size of the opening and the size of the imprisoned insect makes a person wonder how the moth ever exits at all. Of course, it is never accomplished without great labor and difficulty. It is believed the pressure to which the moth’s body is subjected when passing through such a narrow opening is nature’s way of forcing fluids into the wings, since they are less developed at the time of emerging from the cocoon than in other insects.

I happened to witness the first efforts of my imprisoned moth to escape from its long confinement. All morning I watched it patiently striving and struggling to be free. It never seemed able to get beyond a certain point, and at last my patience was exhausted. The confining fibers were probably drier and less elastic than if the cocoon had been left all winter in its native habitat, as nature meant it to be. In any case, I thought I was wiser and more compassionate than its Maker, so I resolved to give it a helping hand. With the point of my scissors, I snipped the confining threads to make the exit just a little easier. Immediately and with perfect ease, my moth crawled out, dragging a huge swollen body and little shriveled wings! I watched in vain to see the marvelous process of expansion in which these wings would silently and swiftly develop before my eyes. As I examined the delicately beautiful spots and markings of various colors that were all there in miniature, I longed to see them assume their ultimate size. I looked for my moth, one of the loveliest of its kind, to appear in all its perfect beauty. But I looked in vain. My misplaced tenderness had proved to be its ruin. The moth suffered an aborted life, crawling painfully through its brief existence instead of flying through the air on rainbow wings.

I have thought of my moth often, especially when watching with tearful eyes those who were struggling with sorrow, suffering, and distress. My tendency would be to quickly alleviate the discipline and bring deliverance. O shortsighted person that I am! How do I know that one of these pains or groans should be relieved? The farsighted, perfect love that seeks the perfection of its object does not weakly shrink away from present, momentary suffering. Our Father’s love is too steadfast to be weak. Because He loves His children, He ‘disciplines us . . . that we may share in his holiness’ (Heb 12:10). With this glorious purpose in sight, He does not relieve our crying. Made perfect through suffering, as our Elder Brother was, we children of God are disciplined to make us obedient, and brought to glory through much tribulation.”

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.(Romans 8:18)

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Natalie and I have since met together for coffee a couple of times, shared pieces of our lives, our prayers of hope, and our tears of sorrow with one another. Tucked away in the dark warmth and safety of her mother’s womb is a precious baby girl. She is equipped with an extra 18th chromosome that she will use to bring glory to her Almighty Creator.

While I can’t physically or otherwise fast forward time for Natalie and her family, it is my honor to be able to cheer them on as they emerge THROUGH this present suffering of their lives and in to greatness!

A beautifully written account of Natalie & Will’s journey has been kept on their Caring Bridge page. I encourage you not only to visit it, but please pray for them and their treasured baby girl. Her name is Runner. The meaning behind her name is so perfect and so befitting, as her Mama beautifully illustrates in a touching letter to her unborn baby.

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This past Saturday our church embarked on #GoCincinnati — a church-wide endeavor to go out and bless the city and surrounding communities. Our family was assigned to help with landscaping at Imago Nature Preserve. While William helped erect a split rail fence, the kids and I helped clear out some planting areas and some trails.

While all of this was going on I was absolutely smitten with an adorable little boy who was working very hard with his Dad. He made several determined trips to the compost pile with his little red wheel barrow full of weeds. It was impossible not to smile every time I looked over at them and I even snuck a couple of pictures. I’m not really in the habit of taking pictures of “complete strangers” kids, but I just kinda couldn’t help myself!

We were encouraged to share our Go Cincinnati pictures on social media using the hashtag #GoCincinnati – so I posted a few on Instagram (@AleisaAK) including the one of the cute little boy with his wheel barrow.

This cute little guy at #GoCincinnati! :)

This cute little guy at #GoCincinnati! :)

I got a phone call from Natalie that evening. She had noticed on Instagram that we might have been at the same site that her husband and son had been working.

“No way!” I exclaimed.

There were several little kids on the site. I asked her what her son looked like. It was all adding up – and then I asked if her son had a little red wheel barrow with him…

“Yes! That was him!!”

Laughing, in utter disbelief, I asked if she had seen the picture I took of her ADORABLE little boy – which I had also posted on Instagram. She explained that she hadn’t scrolled all the way through the pictures yet and couldn’t wait to see!!

I had seen pictures of her family before, but I honestly did not at all make the connection!!! Because seriously — what are the odds?!?! This was so crazy!!!

Who, what, when, where, why and how would it even be possible for Natalie’s husband and son to be assigned to the same project we were??? Based on the sheer amount of people involved – there was absolutely no way to match people and families up with common interests, common prenatal diagnoses, or otherwise. (Yes, I checked!) Yet there we were were — working side by side to serve others, to serve God, and had no idea until after the fact!

Then I was “angry” ;) that this perfectly orchestrated opportunity for our families to connect had come and gone and we were all but oblivious! But now we have this serving experience in common now too. God definitely has His loving and watchful eye on each of our families — on ALL OF US.

That God would trouble Himself with these seemingly “little things” in our lives, imagine how much He must care about the BIG things!

Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.
(‭Luke‬ ‭12‬:‭6-7‬ NIV)

Please don’t forget to check out Natalie & Will’s Caring Bridge site. Your prayers are much appreciated!

January 9th

I squeezed my husband’s hand, as he prayed out loud over my round belly. Moments later, the warm yellowish fluid accumulated into the sterile syringe. Shallow breaths, and the fears of “what if” pulsing through my mind. “These things only happen to OTHER people!!?” I frantically reassured myself. We left and we waited and we waited. Five never-ending days later, January 9th at 1:30 pm, the phone rang. We hadn’t thought to be together on the expected day of the call, because certainly “everything was completely fine.”

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My eager optimism was shattered into a million pieces as the geneticist sorrowfully explained to me that our baby’s amnio results showed a triplicate of the 18th chromosome. Trisomy 18. I don’t remember anything else she said as I crawled screaming out of the bathtub into a hysterical heap in the middle of the bathroom floor. I laid there numb, with my heart ripped out of my body. Why. Why. Why, oh, God, WHY. In those fresh, horrible moments we suddenly became trapped in a world of horrible and vague uncertainty. There would have been no way of knowing what a precious gift lay curled up, snug inside me. That I regarded her as some terrible genetic disaster makes me weep sad and bitter tears. I won’t beat myself up over those illogical apprehensions. How could I have known otherwise? As the agonizing layers of days, weeks and months were peeled away, our gift was revealed.

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Not a diagnosis. Not some horrible anomaly. A beautiful, precious, angelic, amazing, wonderful and perfect little girl. She might not have been perfect according to medical standards, but she was beyond perfect in our eyes. As I look back at today, 2012, my eyes well up with tears. Yes, I’m sad to have said goodbye to my own hopes and dreams of a “typical baby”, but once I held Nora in my arms, there was no other baby I would have traded her for. God had a much greater plan for me – for all of us.

I love this quote by Pope Francis that my friend Maggie shared with me this morning:

“Health is certainly an important value, but it does not determine the value of a person. Furthermore, health in and of itself is no guarantee of happiness: for this may occur even in the presence of poor health. The fullness towards which every human life tends is not in contradiction with a condition of illness and suffering. Therefore, poor health and disability are never a good reason for excluding or, worse, for eliminating a person… A society truly welcomes life when it recognizes that it is also precious in old age, in disability, in serious illness and even when it is fading; when it teaches that the call to human fulfillment does not exclude suffering; indeed, when it teaches its members to see in the sick and suffering a gift for the entire community, a presence that summons them to solidarity and responsibility.”

How blessed I am to KNOW this firsthand. Thank you, God. Thank you, Nora.

Hospital – Days 10 & 11

The past couple of days have been very, very difficult. Yesterday Nora had terrible withdrawal symptoms and high fevers. There didn’t seem To be any answers and we couldn’t get things under control. She is finally sleeping after being awake and agitated for 32 hours straight.

In an attempt to find the source of the fevers they opted to do a CT scan just to cover all of our bases and make site we weren’t missing anything. We were told it probably wouldn’t show anything, so not to worry. (Because we all know how much worrying helps things.)

We were initially told that the spot of fluid was on her stomach, but as it turns out the spot is on one of her lungs. It is unrelated to her stomach issue. An ultrasound revealed that it IS able to be accessed for obtaining a specimen of the fluid, but also showed that the fluid does not look to be clear which can be an indication of infection (as would her fevers and elevating white blood cell count). If it IS infected she will need surgery to drain it, which possibly means another intubation. Obviously we would want to avoid that. Silver lining scenario… Maybe this all happened with her belly to reveal a small but potentially worsening problem on her lung. How else would we have known?

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
(Romans 8:28)

Just wish God didn’t have to go and be all DRAMATIC about it!

Please pray for Nora. We have another long day ahead of us… And she’s waking up crying again…

Post Surgery 1 / Pre Surgery 2 – Day 3

Nora had another very good night. Her heart, lungs and kidneys are all performing exactly as they should be. Yesterday afternoon a part of the surgery team commented that if there were an excess of dead tissue in her body – it would be reflected in other areas. That is not the case. She is doing exceptionally and surprisingly well. They are very optimistic that when they open her up again this afternoon they will see nicely profused, wonderful PINK!

Surgery was originally scheduled for 9:00 this morning, but because of a conflict between the cardiac anesthesiologist and the surgeon we’ve been bumped back to 2:00 this afternoon. We were initially a little bummed out about this, but as William commented – maybe God needs this extra 5 hours of healing to take place. God’s timing is perfect. Another huge lesson I’ve learned through all of this.

I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord. (Psalm 27:13, 14 NIV)

As I was driving home last night to grab some odds and ends I passed an electronic billboard along the highway. I have no idea what it was advertising, but the bright pink glow and the words THINK PINK in bold white font immediately caught my eye. I caught my breath as tears welled up in my eyes and a big smile spread across my face, “YES! Yes, I will!!!”

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Post Surgery

The organized chaos prior to surgery:

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Nora just underwent emergency surgery for gastric volvulus. Somehow her stomach flipped on itself and was obstructed. She was in surgery for about an hour. The surgeon came out afterward and informed us that the condition of her stomach was initially very bad. They allowed it to rest for 10 minutes instead of drastically deciding to remove it. When they re-examined it, it DID pink back up in some areas but not all. They have done a partial closure so they can go back in tomorrow, 2 days, 3 days(?) to see if it has revived any more. At that point they will make the decision to remove any parts that are necrotic. We are PRAYING for full tissue recovery, that NO parts will need to be removed. They will also place a g-tube in her belly to prevent any future episode of her stomach twisting. This will “anchor it down” as it has been explained to us. She has quite a steep road to recovery ahead of her, but as our dear friend Tommy reminded us: STAY FOCUSED ON THE PRESENT. I think it was Proverbs 4:25 that he quoted, “Let your eyes look directly forward, and your gaze be straight before you.”

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Every Little Thing is Gonna Be All Right

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I am in awe of all of your encouraging texts, comments and messages, your PRAYERS are so comforting and they are MOVING MOUNTAINS!!!!! I’m so sorry I can’t respond to each and every one right now. I thought we’d be coming up here maybe for some IV fluids…. Had no idea things were this wrong. Trying to catch my breath and get my feet back on the ground after this frying pan upside the head!

Emergency Surgery

Nora is going into emergency high risk surgery. Her stomach seems to have turned and is obstructed. She is intubated, sedated and stable right now, surgery is any minute.

Nora early this morning:
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Prayers are hugely needed and appreciated.

Silly Fingers

Another beautiful sunrise! My 3 birds are in the top left of the v-shaped tree on the left! :)
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Satisfy us in the morning with your unfailing love, that we may sing for joy and be glad all our days.
(Psalm 90:14 NIV)

I’ll let Nora tell you about her busy day:

Oh, tank you very much, Mommy! Yeah. I had a busy day today, alright! I had physical therapy first thing. I really like therapy. They always come up with some fun things for me to do! Today I got to play with some pencil grippers. I know that sounds strange but I didn’t think so at all! I got to wear them on my fat little fingers and they were soooo interesting!
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Yeah, let me get a closer look at things here:
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That’s kinda funny, huh!
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I think I could place orders with these things.
“Um, I’d like TWO milkies please?! TWO.”
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I was worn out after therapy!
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I got my last Synagis shot this afternoon!! I wasn’t at all happy about someone poking my fat little leggie with a needle and I don’t understand it when Mommy tries to explain it. I cried a lot until I got myself all sleepy again. Before my shot they weighed me. I’m a 14 lb. 4 oz. big girl if you can believe that!!!

What else is hard to believe is that when I woke up from my nap I was the happiest, squealy-est little thing anyone’s ever seen. A much better state than when went down! I just made everyone smile all day. I’m THAT sweet!!

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