2020: Being Purposeful this Year

Delicious dinner smells greeted the tired, work-worn husband as he entered the front door; it was good to be home. Soon, the little family gathered around the set table and spoke blessings to each other and thanks to the Lord for the good meal. The wife was neat and cheerful and the light of the house — home was her artwork and because of her attention and care it was everyone’s sanctuary.

Sounds perfect, doesn’t it?

Well, I’m the first to say this isn’t my reality. I’m hear to confess something to you wonderful readers … I cut corners. Somewhere along my route of wife to mother I stopped treating my role as artwork and it’s become more about my survival.

And that’s okay. Between a difficult pregnancy, bedrest, NICU and PICU experiences, being away from my house for 9 months (and not needing to cook one meal during that time), tending to and toting around medical equipment, and the effects of postpartum I’ve needed to cut corners.

And mama, you will too. It’s okay to accept that we don’t always bounce back after giving birth; becoming a mother changes us and all change takes time.

For me, almost 3 years after having Uriah, I feel that I’m just now coming out of the exhausted, overwhelmed season that left me pummeled.

One way that motherhood changed me is that it’s changed the way I do life.

I think we all have a certain amount of space, and quite honestly, care to give in a day. Before having Uriah, I had lots of creative space to partial out to my areas of responsibility — cooking, cleaning, keeping home, serving others, loving my husband all got a fair share of my brainwaves.

After pregnancy all my creative space, brainwaves, and care became focused on two areas: Uriah (his thriving and medical needs) and my survival.

In an effort to keep my sanity during these last three years I’ve focused so much on the essentials … ventilators, trach plugs, medical supplies, and doctor appointments. Since I have to be walking in order to do those things I’ve also been focusing on myself — what’s easiest to help me keep going in as a mother. (Cookies, cakes, coffee, Target … 😉 )

Everything else suffered. Laundry piled up, blog posts stopped being written, showers happened less, and dinners were more like leftovers or take out.

This year, 2020, I proclaim to be my year of purposefulness. This is the year I stop eating all the cookies and take better care of my body (after all, I’m turning 30 this month). This is the year I stop binging on Gilmore Girls and Friends (could I be any more pathetic?). 😉 This year, I am choosing to not do all the things but to practice the art of caring.

I want to craft, love, pray, read, mother and wife more deeply. This is the year I try to crawl out of the hole of survival and into the light of living.

What’s your 2020 goal?

Making Sense of our Medically-Complex Adventure

Every once in a while I get to see the why’s behind our story. Last week, Uriah had a difficult 4 days following an intense and lengthy bronchoscopy. What was supposed to be same-day surgery became a 3 day PICU admission, a manual bagging, low SATS, three trach plugs, steroids for inflammation, and exhaustive hours spent watching my amazing active boy sleep restlessly and his SATS dance higher than I like.

He’s still recovering from his intense procedure but he is recovering and that is a blessing.

But, as a parent watching her child struggle, there are moments when I wonder why. Why us? Why does Uriah have to struggle? Why the difficulties? Why, why, why?

Tonight, as I cried my little cry, I looked at the stars and saw my favorite constellation … Orion. Long ago, when I was a teen and life felt so big, God so mysterious, and my purpose meaningless I made a pact that whenever I saw Orion I would choose to remember that the same God Who created those stars and has kept them in their place for centuries is the same God Who made and loves me.

And some 10 + years later those same stars greeted me on a night when I wondered why. Why does my son have to work so hard for everything? Why does a simple procedure have to become a threatening, code blue situation? How in the world do normal families function … what is it like to not have to worry about ventilator heaters, trach plugs, suctioning, oxygen SATS, tube feeds, and milestones? Why, why, why?

But then I remembered Uriah’s strength. I remembered his smiles, the silly toothy grins he gives us. My mind wandered over his latest milestone accomplishments — tummy crawling, scooting, saying Momma and Dadda, pursing his lips to whistle, a Swallow Study that showed no primary aspiration, sitting with almost no assistance. These are amazing things for a little boy like Uriah; he is literally a crawling, talking, smiling, scooting, happy miracle and every day, every accomplishment, makes those hard times worthwhile.

Then, there are the random emails I get from young mothers going through PPROM, miscarriages, and extreme fear in their pregnancies. These are the emails thanking me for reminding their authors that God is good, caring, and there in their troubles. These are the emails that make sense of my misdiagnosed miscarriage and all the other horrible aspects of my pregnancy.

And after a few moments reflecting on all this I am reminded, once again, that all life makes sense if I am thankful. And I have SO much to be glad for! For an amazing son who loves me, loves his Daddy, and loves life. For a husband who loves his family with everything in him. For milestones that doctors said would never come. For a home to keep and make memories in.

Though I still wish I could snap my fingers and help Uriah be completely healthy and free from support I am so thankful for where we are at. To be honest, I probably wouldn’t change a thing  because this life we are living is worth every hardship. I know those sentences conflict with each other but it is true … our life would never be this special, this unique, and this bonding if I could change it.

How do you make sense of the hard things in your life? Are there any special ways God reveals Himself in the mess?

 

Frannie

A Happy Day // Hospital Update

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We have a wonderful, wonderful update.

This Thanksgiving we spent the day transferring Uriah to St. Louis Children’s Hospital. It was a busy day but a decision we are so glad we made. Uriah was 4 days old when he took his first big ambulance ride!

We transferred when our Neurosurgeon team gave a very elusive, negative prognosis and treatment plan. Basically, they felt there was too little brain tissue to bother inserting a shunt (and therefore relieving the pressure in his head). They felt the risks and common difficulties of a shunt were too high and would only recommend it if Uriah’s head got too large and difficult for us to care for. They said his brain was so underdeveloped that he was blind and most likely deaf and that he would have very little motor control.

Needless to say, we needed a second opinion. I have had months and weeks to research, read, and connect with families with similar diagnoses’ and I knew how beneficial a shunt could be to Uriah. I also knew that parents of babies with these sort of brain anomalies are often told that their children would would have the poorest quality of life with enormous difficulties.

I thank the Lord for my amazing husband! Within moments of the doctors leaving, Dalton jumped into action, planning how to send off MRI’s, and asking me who I knew we could connect with. By the end of the night we knew we had to transfer to St. Louis Children’s Hospital.

This afternoon part of the Neurosurgeon team met with us to discuss Uriah’s care.

And guess what?! After reviewing Uriah’s scans and examining him they say he does not have Holoprosensephaly (where the front part of the brain did not divide). They do not know why the last hospital gave him that diagnosis.They believe that his brain did in fact divide properly but that his severe case of Hydrocephalus compressed it.

They want to insert a shunt and believe his brain is very likely to “fluff up” or “sponge out” once the pressure has been relieved! And while his brain may never be fully formed like yours or mine and developmental delays and special needs are likely they see no reason for him to be blind.

I cannot tell you what this means to us. To leave behind a hospital that encouraged us to do nothing but manage the symptoms of Uriah’s pressure and enter one that believed a shunt would be very beneficial to him is absolutely … I have no words. (All I want to do is cry tears of happiness but that hurts my incision so I just sit in awe and thanksgiving and ponder all the possibilities our Uriah Boy has). 🙂

When we left the last hospital Dalton and I knew that it was a possibility to be given the same treatment plan in St. Louis. And we knew that if Uriah was meant to be blind, deaf, and benefit more from a lack of treatment than we would love him just as strongly. But we just *had* to know if the doctors were right. We just had to have a second opinion. ***We wanted his brain to be given a chance to “fluff out” and recover from the damage the blockage created.*** We wanted him to be given a chance.

My new mommy-heart is so full. There is no greater gift than being given a chance, both spiritually and physically, and we thank God for giving us both. I am thankful we were given the time to prepare, research, and connect with families with similar stories so we would know how to respond (all that bed rest proved useful in more ways than one!). I am thankful for a husband who is bold enough to demand second opinions and question professionals (I’m not so much) 😉 . I am thankful that Children’s accepted Uriah’s case and gave him the medical attention and examination he needed. I am thankful for a medical team who personally meets with us. And I thank the LORD for the better diagnosis. I was prepared to love a little boy with two life-altering diagnosis … to be told he has only one (and the relatively more minor one at that!) is something I never thought I’d hear. I honestly can’t believe it.

Thank you all for your prayers. We’re currently holed away in a hotel room and I am enjoying being able to finally put my swollen feet up and drink coffee in peace. We’ll be right back to Uriah’s bed tomorrow morning but for the moment we rest and smile little happy smiles to ourselves over the good news. We love our son so much, no matter what his diagnosis and abilities, but this news is truly refreshing.

As far as upcoming surgeries, Uriah’s TE Fistula (esophagus/trachea) surgery is being tentatively planned for this Monday (it was rescheduled when we changed hospitals) and then his shunt surgery will follow in the coming weeks after he has rested and recovered from the first.

We still have a long road ahead of us but this makes the difficulties so much easier to wade through. Is there anything better than a chance?

Love and blessings,

Frannie

Bump Update: Week 24, Broken Waters, and Hospital Stays

Bimp Update at AuthenticVirtue.com

Hello, my sweet people! I’ve got another crazy pregnancy update coming from my cozy, hospital bed to you. 🙂 My, hasn’t this pregnancy had it’s ups and downs?

My water broke this week at 24 weeks. We were admitted to a great hospital in our area and will be here until Uriah joins us. We don’t know why it broke as of yet.

At this point, I am having no contractions large enough to be registered which is awesome! We want Uriah to grow for as long as he can.

We’re at a critical stage for the next several days where it is quite possible I can go into labor; however, this morning we spoke with our doctor and he believes I have passed the “imminent labor phase” which is SUCH A BLESSING! If I can make it past this coming week I’m more likely to carry Uriah to the safer time zone of 34 weeks were we would induce. Honestly, every day he remains in my tummy is a day in his favor so we are grateful for every hour. 🙂

So, what does this mean for us? I will be permanently staying in the hospital until Uriah arrives which could be soon (we hope not!) or at least 10 weeks. Thankfully, my darling Dalton will be able to stay with me and commute to work; I am so, so glad we won’t be separated.

This is our 2nd full day at the hospital and we are doing well. There have been tense moments and we wish we didn’t have to go through this but God is SO GOOD and we can feel it! He has allowed us to walk this path so we will walk it. We are already being so blessed by Him and He is loving us so well through family and friends.

If you’d like to pray here is a current list of things I covet your prayers over:

1) That I do not get an infection which will definitely lead to labor.
2) For Uriah to have as much time to grow as possible. 💕
3) When Uriah is born he will not only be a preemie but will have to deal with the difficulties hydrocephalus and (possible) chromosome issues can create. Our darling boy has a long, upward battle and he needs prayers for healing (if God’s wills) and the strength to thrive through all his difficulties.
4) For my husband and I to be a shining light in our environment and that we will grow closer together — he has been such a delight and comfort to me!
5) For me not to have any fear! My pregnancy has been full of unknowns and surprises. To go from my original plan of birth at home with a midwife to a possible c-section and now to natural (or induced) labor in a hospital setting is a lot for me to take in! Above all we want Uriah’s safety, but this is our first child and we yearn for the experience to be as special and non-intrusive as possible. Plus, I am dealing with fear over the actual labor. I know every birth (however and wherever it happens) is something to be delighted in but I don’t want to just endure, I want to be at peace even in the pain. Please pray I can be prepared mentally and have no fear during the experience. 🙂

Sweet readers, I love each of you. Thank you for walking through this experience with me; my, what a journey it has been. But it has been sweetened by your friendship and I appreciate you!

Love, blessings, and (great!) hospital coffee,

Frannie

How Do You Let God Work Through You?

Coffee With You Series

Encourage others. Bloom where you’re planted. Live Authentically. Tell of Jesus.

I love how God grows, changes and refines us. When I started Authentic Virtue in 2009 I was a nineteen year old who had just moved from her hometown in Alaska to Missouri. My family lived at home then; now, I have two nephews from my sister and her sweet husband, a brother soon to graduate from college, and am married to the love of my life. I’ve lived in five different houses within that time, finished my Associates degree, and began teaching at a local Christian school. Now, we’re having a baby.

Life changes. But our God doesn’t.

I believe each of us have been given a special mission in life. We’re given a special desire, talent or passion He wants us to use to glorify Him. It’s all about making His name great, not our own.  I used to believe that meant doing something radical and great: crossing the seas for mission work, fasting without fail, living life single for God.

And while those things are asked of some of us I also think God uses our small, everyday desires and moments to proclaim Himself.

The woman who loves baking and gives goodies to the neighbor children is making God known. The dad who goes to work without complaint and comes home to love his children and wife is proclaiming His Master and making Him famous. The single college student who is laboring through classes and manages to sit down for coffee with her hurting friend is declaring God’s attentive, loving heart.

That’s what I want my life and writing to be about. Living our every day moments pointing to Jesus and saying, “Look to Him. He is good, and gracious and I love Him.” I want to be an encourager. I want to bloom where I’m planted. I want to live authentically.

Why?

Because all these things tell of Jesus. 

And that’s a great thing to live for.

Making God great is what it's all about even in ordinary life.  AuthenticVirtue.com

What is your life’s mission statement? Do you feel called to do or be something … whether great or small? Has God ever used a ordinary person or moment to bless you and point your eyes to Him? Tell me about it! 

Love, blessings, and coffee,

Frannie