It’s hard to believe that once it was a major feat to have gone on a walk with Nora up to the mailbox. Gradually as the weeks passed we ventured further and further away from the comfort of the family room. We made it to Nana & Papa’s, then all the way to Aunt Sarah & Uncle Dan’s house almost an hour away. Today we embarked on the unimaginable…

After an almost 10 hour drive Nora is on her very first vacation in the Upper Peninsula of Michigan, Island No. 8 in the Les Cheneaux Islands on Lake Huron. This little remote corner of the world is my most favorite place to be. I first visited here when I was just 3 months old – same age as Nora, and just about every year of my life thereafter. Although we no longer stay at the quaint little cottage in the woods that once belonged to my Great Grandmother, it is still just as special. I am over the moon happy that we’ve actually brought Nora up here. My parents are here, as are my sisters and their families, all of us together on our vacation we so greatly enjoy every year. William and I weren’t sure we would be able to come along this year — but HERE WE ARE!!! Gavin and Greta came up a day earlier with everyone else and it was sweet to be reunited with them. Thank you so much, Schmidts for lending us your cottage this year! It’s perfect!

Nora got to dip her bare little toes in Lake Huron, which was considerably warmer than I’ve ever known it to be. That mattered not to her. It was NOT the warm bath water that she is accustomed to and she was very angry with me. I was given a strict warning never to do that again!!

That deserved a rest after that whole ordeal!!

Around 9:00 we made our way back down the pine-lined path to the dock and watched the sun set over the water.

I was thrilled, but unsurprised to see the 3 geese floating past,”I am with you… I am with you… I am with you…” It was beyond perfect.

As I stood there by myself at the end of the dock, mesmerized by the 3 geese – I couldn’t help but think of this song:

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
(Joshua 1:9 NIV)

Hmmm... Sleepies? Or milkies... Hmmm...

(Snora)

I will extol the Lord  at all times;
his praise will always be on my lips.
(Psalm 34:1 NIV)

(even when we’re sleeping!!)

We have a very long, but very exciting day ahead of us tomorrow! Please keep us in your prayers for safe travels! 🙂 🙂 🙂

I’d meant to do a followup on yesterday’s post, but now it’s so late in the day that I may as well just go on to Day 94!

It was the strangest thing waking up this morning. I laid there in my semi-awake state bracing myself for the lead boulder that usually comes crashing down onto my chest. It wasn’t there today! I waited and waited — nothing. Aaaah!

As I stated yesterday, I was at peace with the decision we were given regarding Nora’s ineligibility for heart surgery. I will try to give a summary of the hows and whys as best as I can in my very limited medical intellect.

We sat there waiting for probably only a few minutes, but what seemed like lengthy hours for Dr. Hirsch to come in. As he finally entered the room, I was intent on studying his body language trying to ascertain what the answer was. He seemed confident and he was smiling. There was no indication that he was about do deliver us any bad news. I was nervously hopeful, hanging on to his every word, his every movement, barely able to breathe. He went through his list of questions for us, wanting to know if anything had changed since last week with Nora. Other than her cold, there was nothing new to report. She was still not showing any symptoms of congestive heart failure. By the way her heart is operating, theoretically she should be experiencing at least some symptoms — but she’s not. After a productive debate with the surgeons, it was concluded that to perform surgery on Nora right now may end up causing more harm than good. It could potentially open up a Pandora’s box of trouble. This decision is the same decision that would have been given to a child without trisomy 18. I do not believe that Nora was discriminated against in any way. Our next step would be to administer sildenafil (while in the hospital under close supervision) which would relax the blood vessels in her lungs. They need to see if by doing this she would then show symptoms of congestive heart failure. This would indicate whether or not the VSD is causing her pulmonary issues.  If the VSD is NOT causing her pulmonary issues, the surgery would be pointless.  Her heart is otherwise doing its job. The VSD by itself is not a fatal condition.

I hope I explained this correctly? Kinda wish I would have gone to med school. (If anyone needs any critical answers or emergency explanations in regard to art history, I might be able to help you out.)

I can’t tell you how much I appreciated Dr. Hirsch’s genuine concern and his compassion for us and especially for Nora. My heart swells with gratitude. He is not only an exceptional doctor, he is also an exceptional man. The prayers that the right people would be there at the right time for us continue to be answered.

It was suggested in a comment yesterday that sometimes the not knowing is the worst part, and yes, I would have to agree with that in this instance!!! A comfortable awakening with the unmistakeable presence of peace was upon me this morning. Then the confirmation that we were headed down the right path came about in the form of the THREE woodpeckers tapping on our roof this morning. One? Okay. Two? Sure. But no. There were THREE. Too uncanny to be coincidence!!?? God couldn’t be more obvious in our lives than if He were sitting here at our kitchen table.

We have a great week planned ahead of us without any hospital visits – a much needed respite!

Here are some sweet pictures from today!

Women of the Tiny Hat Society

Muthr cuddles

Compatible with love…

… and with milkies!!

Winding down the day with an evening walkies.

Goodnight and thank you for your love and prayers!!

While we didn’t get the answer we were hoping for this morning, we do believe that we got the answer we were praying for, which is God’s will. Surgery is not recommended at this time, nor would it be for a chromosomally normal baby. It might be something we revisit in the future, but for right now we are regarding every day with Nora as a gift. We completely trust our amazing cardiologist, Dr. Hirsch and of course our incredible God! Thank you so very much for your continuous, ongoing prayers. I never would have imagined being THIS at PEACE after receiving news I thought I never wanted to hear. Thank you, and all praise be to God!

I will give more details in a Part 2 during daylight hours… Mentally and physically drained, but resting easy in God’s loving arms, fully encompassed in peace!

Goodnight!

I’m sitting here propped up against the wall in our basement listening to the radio after just having assembled an IKEA shelf in a record time of 1 hour! Today was certainly a better day than yesterday. I’ve concluded two things:

1) It’s not a good idea for me to be completely alone. It’s too easy to let my dark thoughts fester into an all out catastrophe. This is a whole new reality for a self-proclaimed recluse, such as myself, to adjust to. Now, more than ever, do I need my family and community of friends, even if it’s just on the other end of the phone. I need to be the one to pick up the phone when I feel things spiraling out of control. Often times I’m too stubborn, prideful,embarrassed, or just don’t want to bother anyone or bring anyone down with me. I like to pretend I can handle it all on my own – and the next thing I know I’m hyperventilating in a lake of tears. Not working out for me to be alone, especially when Gavin and Greta are away.

2) Maybe God doesn’t come rushing down and fix all my problems right away in the way I’d like Him to because He wants me to learn to trust Him and to figure it out on my own that He is right here with me. He wants me to learn about Him by staying active in His Word, “Pick up the Bible! Read about Me and who I am! I am ‘I AM’!”

{God replied to Moses, “I AM WHO I AM. Say this to the people of Israel: I AM has sent me to you.” (Exodus 3:14 NLT)}

In the same way I’ve let my own children cry themselves to sleep on occasion when they were babies and toddlers. It pained me terribly to hear them crying. I wanted to rush in and bring them in bed with me. But I also knew that they needed to learn how to fall asleep on their own – and no, they couldn’t sleep in bed with me! It was never because I didn’t love them! They eventually figured it out that I was always just in the next room and that I would be back in to get them when they woke up. Their little tantrums grew shorter and shorter and now at 6 and 8 years old they certainly know how to fall asleep on their own. It’s getting them IN TO bed that has become the big issue in recent years!!

I’m still the spiritual infant in all of this. God is sometimes right in the next room with His head in His hands listening to me. It pains Him to hear me crying, but He’ll be in to get me after I’ve learned to rest in Him. He’s waiting for me to trust Him and to know that He’s got my very best interest in mind.

Today I felt God standing next to my “crib”, patting me on the back and whispering that it’s all going to be okay, “Stop worrying and REST your mind! I’ve got this!” He hasn’t reached in to take me out yet, but at least I know He’s there and I am soothed.

God probably wants to clear up any misconceptions that may or may not be out there as well. I am no saint, I have real human emotions, I don’t have it all together. I am in fact an ordinary person allowing God to do extraordinary things with and through me.

Here’s Nora:

Oh, hi! It's me - Nora!

Rumor has it that I was a little fussy yesterday...

I had lots of boogies and my little cheek got all red and chapped.

I was NOT happy about any of this.

And my tear duct is all jacked up too. My poor eye!

Things were a little bit better today though.

I have my doctor's appointment tomorrow morning. Please pray for my Mom and Dad. While they might be scared for me, God already had a plan for me before He even created the universe!

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)

Nora always tells it like it is:

Nora’s appointment is at 8:30 tomorrow morning. Please pray for us!!

How quickly a 2 ½ hour crying jag can take everything I’ve been so thankful for and throw it right out the window… And how horrible and selfish that seems to me as I just typed it out.

Nora has a cold, which makes breathing and eating difficult. Sensing my anxiety I think is making things much worse for her. She cried so hard she turned blue. Her clogged tear duct isn’t getting any better either. A trip to the pediatrician was in order. After a lengthy listen to her lungs we were instructed to get an xray up the street at the Children’s Hospital outpatient center. It was to ensure there wasn’t something else serious going on. Fortunately we didn’t need to wait too terribly long for an answer and it was determined that there was no pneumonia – praise God!!!!

It’s been a very long day and I’m glad it has finally come to an end. I love this little girl beyond belief – but I needed a little break from her this evening. It was good to get away for a couple of hours to the back deck of a friends’s house for a girl’s get together.

As if a crabby, colicky baby isn’t trying in and of itself – we have this whole other cardiac, lung, trisomy 18 issue compounded into the mix. I spent a bulk of the day angry and frustrated with God, feeling alone and defeated. “Everyone else can have normal babies… Why do I have to deal with this??” “I can’t do this… This sucks…” “Why why why why why?????” … and on and on whined my spoiled inner-being.

Remember when I was so thankful just to be able to hear that first cry? Remember how exhilarating it was to be able to give her tiny little body a first bath? A first walk to the mailbox? And on and on and on… I have been more than beyond blessed and now here I am taking it all for granted and bitching about it.

I wish I had a better 3 month birthday to report, but it is what it is. I can only hope for a better tomorrow or pray that it is at least bearable. I told God today that I really could do without any more lessons in patience… but apparently He thinks otherwise. Please pray that sweet little Miss gets over her cold soon and that nothing else gets tracked in here.

Heard this song today for the first time as I was leaving the pediatrician’s office – made me WEEP…

As much as my human heart may lash out at God right now, my soul will forever give him thanks and praise.