The Importance of Being Understood

Have you ever felt the ache to be understood? As mothers, I think there is a strong desire to have our fellow mama’s understand us, our choices, and our life situations.

We want people to understand, not just tolerate, why we’re late to church again. We want the picture-perfect Target moms to get why we’ve got circles under our eyes, a double shot Venti latte in hand, and three uncombed children practically spilling out of the cart. I think we want to be seen for the mess we are and accepted with a hearty “I’ve been there, I understand” smile.

I know I do.

Lately, I’ve been longing to be understood. I want people to understand the ache in my heart when I’m scouring grocery store aisles for prune juice and probiotics. I want to be understood when I walk through Hobby Lobby with a darling son and equipment that won’t stop alarming. I crave the acceptance that only comes from similar experiences.

I know my heart’s cry is needy. Why do you need to be understood, Frannie? Just do you. Be you. But it isn’t that easy. Feeling alone in your situation, whatever season of life it is, can feel exhausting.

Imagine the pure joy I had when someone accepted, understood, us. We were cruising JoAnn Fabric’s aisles and I was starting to feel myself shrinking as Uriah’s ventilator kept alarming. It’s this loud, repetitive sound that occurs when he is breathing fast and, since he was so happy and excited to be out of the house, the whole store could hear us coming. 😉

And whenever you carry a child with loud medical equipment you tend to get sweet, kind, pity-filled looks or stares. And as well-meaning as those looks may be, you can’t help but wish to be normal, not pitied, and understood.

As I was cruising past one aisle and entering another, I turned and saw a 15-ish year old young man with Dwarfism looking Uriah over. And, without one ounce of pity or look of sorrow, he looked me in the eyes and said, “That is a cute kid.”

That is a cute kid. 

No “how can I pray for your son?” No awkward side-eyes. No bold stares. No pity-filled, lip quivering looks. Nothing but pure admiration for a little boy who is so much more than the trach sticking out of his neck or the machine beeping wildly beneath the stroller.

It was in that moment that I realized that young man understood us. No, I’m not saying he understands everything about our medical journey or difficulties. He probably has no experience with a trach or feeding tube.

But he did understand what it means to be different. He understood sticking out in a crowd. He understood the fear, the worry, the awkwardness of not being normal.

And in his innocent way, I felt embraced. I felt like he was part of the tribe I needed to find. I felt like Uriah was seen for who he was and accepted without question.

(I always worry when I share these posts that you, my amazing reader and friend, will worry that you’re making me feel uncomfortable, that you’re part of my complaint. I promise you, you aren’t. We have an amazing group of friends across this nation who have embraced us, given us courage, and love! I tend to only struggle with these feelings when I’m surrounded by folk who don’t know us.)

How about you, friend? Are you longing for someone to simply look at you and understand? Are you hoping to find a tribe who accepts you, your children, husband, home, and time schedule without question or judgement? You’re not alone, I promise. We’re all looking for friends who understand. 

The beautiful thing is that there is always one Who does understand and that is our Heavenly Father. He knows our hearts, knows why each tear falls, and invites us to cast every care on His Son, Jesus. He came to tend to the broken, the weary, and the hurting.

And after He works on us, we can find ways to understand and be there for others. 

Love, blessings, and coffee,

Frannie

Currently in our Home // January 2018

Keeping in touch @ AuthenticVirtue.comSo, there have been lots and lots of good things happening in our little corner of the world.

Dalton got a new job and he is really, really liking it. He now works as a technician with Rottler Pest and Lawn Solutions and he is doing an awesome job scheduling and meeting with customers and driving miles and miles to help protect homes and businesses from … you name it! Bugs, snakes, bats, raccoons, feral cats … the list goes on an on! There are so many cool things he’s learning and then I get to learn from him! All sorts of fun facts about animals!

We’re so blessed by this new job. For several years Dalton worked in a maximum security prison and while he was an amazing security officer he is so relieved to be in a better environment. This new job was an answer to months of prayer and waiting. Not only is it a much better environment but his new job brought along a pay raise and a work vehicle. 😀 Lots of fun things to be glad about!

I have been busy keeping busy! I am SO loving our home. We’ve been home from the NICU for 6 months now and I am in heaven keeping home, spending every day with Uriah, and finding new ways to mom better.

We keep pretty busy starting our days around 6:30. Uriah moves to the living room at 7 and he gets dressed and washed up for the new day. Then we rotate between active and more relaxed activities — from reading books and snuggling to tummy time and standing in his new cool stander. We have lots of therapy related exercises to do and that keeps the day full.

We also have several visitors a week now that we have a private duty nurse who comes twice a week for 6 hours and OT and PT therapists who come 8 times a month. Between those awesome ladies and the nursing agency and insurance folk who make their rounds we tend to be ushering people in quite a bit. Not to mention our monthly visit to St. Louis Children’s.

So, between trying to keep up with Uriah’s exercise schedule and meeting with his awesome medical team (away and at home) and keeping our home running I find myself pretty occupied most days! Dalton has always done an awesome job in finding ways to keep me encouraged by filling his evenings after work with holding Uriah while I cook dinner, cleanup, and sometimes go out for a cup of coffee. He’s such an amazing guy!

Uriah is doing amazing things! First of all, my little baby turned one in November! How time has flown!

I can’t stop telling people about all of his accomplishments! He is now saying Momma, Dadda, and Nanna. He is rolling all over the place and is almost rolling onto his tummy — if only that vent tubing didn’t get in his way! 😉 He LOVES to stand in his new stander, loves to sit assisted, and LOVES LOVES LOVES driving backwards in his cop car walker. Little Bear is still his favorite show and right now he thoroughly enjoys dropping things from his tray and listening to the loud sounds and learning how to put objects into a jar. 6 teeth make his smiles hilariously cute. Oh, he also loves pulling his trach and the vent tubing apart which makes life very interesting. He’s also done two ventilator weans!

Since our discharge in June Uriah hadn’t had one sickness until December when he caught a nasty cold. The Enterovirus led to him throwing up which led to aspiration pneumonia, a 911 call and ambulance ride to the local ER, and then an ambulance ride to SLCH where he got the help he needed. He went from room air (needing no oxygen at all) to needing 6 liters within 24 hours. We spent 4 days inpatient. I have to say that my mom really was a huge blessing during that time! Since Dalton didn’t have any vacation built up just yet, I asked my mom if she could please help me for a few days. With the encouragement of my dad she dropped everything and spent the next 3 days doing everything for me since leaving Uriah alone just wasn’t an option. He’s old enough now to know when he’s alone and we couldn’t do that to him!

It was SUCH a relief to have someone close by to help with Uriah. Mom watched him when I went to shower. She bought lunch, hauled coffee, and helped entertain. She was a blessing and we are so thankful for her being there for us!

We came home the 23rd of December and then Dalton and I got sick together — ah, me. I am glad that season is over. 😉 We we’re both throwing up on Christmas Eve (poor Dalton got the worst of it) but by Christmas Day we were able to keep a little bit down. And thankfully, Dalton’s mom braved the sickness and brought cheer into our dreary home on Christmas. She also did 8 loads of laundry for me which was an incredible blessing!

Now, here we are in the middle of January! I think we’re still recouping from the upset that week of sickness caused but we’ll get back to our normal soon enough. I can tell Uriah is still weaker than normal but he’s such a trooper that I know he’ll be stronger in time.

Now, if I could just push through the dreary, tiredness I seem to be battling I think this winter could still turn out to be a cheerful one in our home. I hate feeling like doing nothing? Is it the dark weather? Tiredness? Too much holiday sugar? Haha! Whatever has me sleepy I’m hoping can be defeated through rest when I need it and a victorious win over my to-do list. Checking things off my list always puts a pep in my step! 😀

What are you all doing this winter? I would love to know! 

With love, blessings, and coffee,

Frannie

 

This Time Last Year: Learning About Hydrocephalus

September 8th, 2016 I drove to our high-risk specialist for a twenty-two week check up on Uriah. I remember feeling pretty good about our appointment; it had been at least four weeks since my last emergency room visit where I lost blood and thought, for the third or fourth time, I was miscarrying. Although, to be honest, we had had so many difficult issues in my pregnancy that getting an ultrasound always made me feel slightly uneasy — like, today might be the day I again learn something is wrong.

But we were doing okay; my subchorionic hematomas were disappearing, my misdiagnosed miscarriage was beginning to be a past memory, and we had a closet full of little girl dresses for our daughter. (Since we had been told it was a girl a few weeks prior).

I settled onto the little recliner and let the technician wave her ultrasound wand over my growing belly; we chatted but I could tell something was wrong. Small tears trickled down her face as she tried to remain professional. A sinking feeling settled in but we pushed through the exam. When I told her we we’re expecting a girl and asked for a confirmation I got to experience one of those funny moments when I’m told, “No, it’s a boy; see here?” I laughed to myself because, why shouldn’t the gender be wrong; it had already been a chaotic first pregnancy why not add a little comedy to it? I imagined naming him Isaac for laughter since it was too silly not to laugh.

She left and it took an abnormally long time for our doctor to appear. Again, the sinking feeling filled me. I had seen tears, hadn’t I? Eventually, the specialist arrived and, by the look of his face, I knew I could ask confidently, “Something’s wrong, isn’t it?” He asked me how knew and I commented on his very sweet but teary-eyed tech. He nodded, I asked to get off the recliner and sit in a real chair. Bad news shouldn’t be received while reclining.

Your little boy has a condition called Hydrocephalus. His brain is being compressed. His femurs and thigh bones are measuring short. This often goes hand-in-hand with trisomies. Like Down Syndrome? Yes, or Trisomy 13 or 18; both are incompatible with life. You’re son will need to be born in a specialized NICU by c-section; I recommended delivering early in a hospital in St. Louis. 

What do we do now?

There a number of tests we could take to rule out the possibilities of trisomies but I’ll be honest, they run a risk to the baby and premature labor. I won’t even offer a termination because I think you won’t accept one. You mean an abortion? No, we wouldn’t considerate that. We’ll need to do weekly ultrasounds to keep track of the baby’s head circumference and growth.

I’m not really sure what happened after that; I know I thanked him for his kindness and confidence in our God Who believed all life deserved to be born. I also told him to thank the teary-eyed tech for being so kind.

I scheduled the next appointment, walked to the car, unpeeled a banana and began to cry over that messy breakfast. I cried and I cried. I wanted to call Dalton but he was working and I hate giving him bad news over the phone. I wanted to call Mom but knew I wanted to talk to Dalton before anyone else. So, I called my wonderful friend and husband. The good news is that you’re having a son. The bad news is that there are some problems with his brain and bones. Maybe a Trisomy like Down Syndrome. Can you come home?

The day proceeded slowly; I cried while I drove home. Cried over how unfair it was to receive more bad news. Tears over the thought that my precious baby could be suffering that moment. Fear of the c-section and grief of losing the home birth we wanted. Tears because what did this mean for our little boy? What did a compressed brain mean for his future? What did a Trisomy mean? Could we really be one of those families who experience a child born incompatible with life?

The rest of the afternoon was spent at home with Dalton, who is an amazing comforter. I remember our land-lord showing up to do some painting in the house and Dalton asking him to come back later, we just got some bad news, he said. We chuckled over the gender mix up and ate ice cream, exhaustion filling our hearts.

I talked with our parents; telling them about the dubious medical diagnosis. Mom and Dad worked with some wonderful friends who had a precious daughter with the same diagnosis. They quickly called them and received the amazing love and understanding and practical advice you get from someone who has been in your shoes. Mom and Dad called back and told me about the connection and repeated the hope our friends had given.

And then I went to bed. The day had ended and we had survived. This precious baby boy with difficulties was still growing, still miraculous, and still ours. I’d spend the next few weeks re-writing my new birth plan to include a c-section and NICU two hours away; I’d google Hydrocephalus and then wish I hadn’t. I’d feel moments of pity and grief. I would write this blog post and we would begin to receive countless prayers and love from our friends and family. I would connect with a private Facebook group specifically for those with Hydrocephalus and I would be embraced by an amazing community. I would write this post 8 days after our ultrasound sharing all the blessings God was sending our way.

Little did I know my water would break in 10 days.

It’s amazing to be one year from this event; it feels like yesterday. Maybe that’s because our live’s went on a 9 month pause?

Yet, if given the chance, I would change none of it. Yes, it hurts. Yes, it’s hard. Yes, I still cringe when I think of the memories. And yes, I wish I could make easier on Uriah.

But look at this precious baby. Look at what God has done in his little life. Look at the joy, the fun, the sweetness, and the miracles he has given us. 

I imagine that this time next year the bad memories will hurt a little less and the new ones, the memories we make this year, will be closer to the surface. I want Uriah’s first library visit to be the memory I think of this time next year. I want to remember the friends we’ve grown closer too and the family too. I want to reflect on how adorable and healthy Uriah is and how blessed we are.

I hope my reflecting over the past isn’t turning into a broken record for you, sweet readers. I process life through words and writing and, to be honest, I don’t know if I’ll ever get over the hurt broken dreams bring. So I’m sorry if my reflection bores you; but this is how I work through life’s experiences. This is how I ponder God’s hand and how I move on from the pain and rejoice in the midst of it. I admit I’m still learning to get over the hurts and difficulties  but I thank God for His perfect will and plan for our lives — including all of the pain He’s helped us walk through.

With love, blessings, and coffee, 

Frannie

Welcome Home // The End of Our 218 Days in the NICU

Hello, sweet, sweet peoples!

It has been far too long. There’s been a lot going on (not to mention a laptop needing a repair shop). Most wonderfully, we are home! After 63 days of hospitalized bedrest and 218 days in the NICU (281 all together!) the Duncan #partyof3 finally made it home.

We were discharged from St. Louis Children’s Hospital June 26th; we’ve been home a grand total of 42 days. It is absolutely glorious! Forty-two days to begin adjusting to having a baby at home. Forty-two mornings waking up to being in the same house, in our own beds, and forty-two nights of baths, snuggling, and enjoying every moment together at last.

Here are some pictures of our days together! (Click on them for a larger view) 🙂

We are so thankful to be home. Uriah’s life has been a full adventure and God has been exceedingly good to us! Sometimes, as I rock Uriah to sleep, I ponder the events of the last 10 months. From the moment my water broke at 24 weeks (and even beyond that!) all the way to Uriah being born and having multiple surgeries, close calls, and the difficulties living 2 hours way from home God has been present, loving us and preparing us every step of the way.

There is still a lot of growth and development we are working on but Uriah is making amazing progress! He just weaned off his oxygen (woohoo!) and we will begin discussing ventilator weans at his next appointment. His g-button has healed nicely and we do weekly tastings of thickened milk; sadly, it’s still not safe for him to eat by mouth (due to silent aspiration) but, Lord willing, we will get there. These things just take time, patience, and hard work. 🙂 His VP shunt seems to be working perfectly! We had his 6 month shunt anniversary in May; it’s often said that if a shunt lasts 6 months it is a good possibility it will work for quite a time. Below is a comparison of his first MRI (on the far right) taken at birth, to an MRI done after the shunt was placed (middle), and the most current MRI (far left). See the amazing difference in those white areas of the brain? That is the brain’s ventricles shrinking as the brain expands and the excess cerebral fluid drains away. What a blessing!

As far as personality and development Uriah is absolutely wonderful! He has the sweetest, funnest personality ever. He loves to chew on everything, stick his tongue on Mom and Dad when we kiss him, talk around his trach, roll on the floor, play with his toys, and listen to music and Mommy read. He loves snuggling with his bear-bear (a grey, silky bear and blanket) before bed and then he sleeps a full 8 hours (usually). He’s always happy to wake up and start the day — a true beam of sunshine in our lives!

 

Some things we are looking forward to? Starting weekly physical therapy visits! 🙂 Uriah loves to roll around but before he can start crawling he needs more muscle development in his neck, core, and arms and tummy time plus therapy will really help! We’re also excited for his highchair which should be arriving this week! I can’t wait for him to have a special place to sit with a tray! And, one day, we’ll feel more comfortable taking Uriah on trips so we can go visit our family. That will be exciting!

There’s so much more to share but I’ll hold off till a later day; I can’t wait to begin writing again. Being home is, for me, such a special time and I adore the mundane, daily tasks I get to accomplish. Cooking, baking, decorating, cleaning … it all has a new meaning after being away since last September. 🙂 I’m sure one day I’ll grow tired of the never-ending tasks but for now I savor them and squeeze them in between the moments of play, snuggling, and work with Uriah.

In the mean time, thank you all for your love, prayers, and friendship. I so appreciate your being patient with my lack of commenting. Our laptop is currently out of commission but once repaired I hope to be back in this community again. Until then!

Love, blessings, and coffee,

Frannie

Catching Up with You // Day 179 in the NICU

Keeping in touch @ AuthenticVirtue.com

Hello, sweet people. Ages have past since the last real update on Uriah; in fact, the last time I shared about our little guy’s progress he was only 3 1/2 months old. Now, he is two days away from 6 months. Let me share with you some of the amazing, hard, wonderful things we’ve been through over the last 5 months!

We have been in the NICU a total of 179 days. We’ve seen our little guy go through SO much and have been amazed by the goodness of God in his life.

Uriah has finally gotten used to his trach. The tracheotomy felt like a last resort but it has ended up being one of the best decisions we could have made. Now that he is no longer on the ventilator and breathing tube Uriah has so much freedom! I’m able to pick him up, play with him, do tummy time and roll around on the floor.

Speaking of tummy time, Uriah loves it! He loves to hold his head up on his own and is beginning to roll over! (Which is a lot for someone with a head in the 99th percentile!) 😀 He loves to stroke his hair, suck on his hands, and especially likes to bang his toys as hard as he can.

He’s begun teething and drools without end. The sad thing about having a trach is that it can keep you from using your voice; the doctors had told me not to expect to hear when Uriah cries, coos, or laughs. And while I cannot hear him in those traditional ways I was surprised and thrilled when he began making sounds around his trach. It’s a lot of gurgling breathing sounds but I’m positive he makes most of the noises on purpose — after all, he wants to talk and knows this is the only way he can! This morning I mimicked his gurgles and he got the funniest look on his face … I guess I was speaking his language!

Right now, we are hoping to go home in 6 to 8 weeks. Uriah has still not gotten to eat by mouth because it was discovered that his TE Fistula had reconnected and there was a small leak from his esophagus into his trachea and lungs. He has had two small procedures where they cauterize and place glue over the connection hoping that this will seal up the leak.

Hopefully, he will have a Swallow Study done next week and, if there is no leak, we can begin the process of eating! For a baby who is 6 months old and has never been able to eat by mouth this will be a ginormous task. But, we believe God is incredibly good and kind and that His ultimate will is best. Instead of being anxious over this step we’re finding ways to be thankful that we have even gotten this far!

This is a fun stage to be entering. As we think about going home in the next two months I’ve begun talking with private nursing agencies and had an inspector come to our home to ensure it would meet Uriah’s equipment needs. Sometimes, I am overwhelmed when I think about how different life will be — nighttime nurses in our home, carrying an “army’s worth” of supplies when we leave the home (or even move to a different room), and calling the electric company to put us on the “priority list” in case of a power outage are just a few things to consider.

But then I watch my baby boy play. This is a living, thriving, happy baby who was given so little hope in the beginning. This is the baby who watches me walk around his bed even though we were told he was blind. This is the baby who loves to listen to music even though we were told he was likely deaf. And this is the miracle who is thriving even though we were told there was too much damage to even try the necessary procedure. Being Uriah’s mom is a role I absolutely love and it is sweet.

Please keep lifting our family up in prayers as we near the finish of our NICU season. Some specific requests are:

  • For Uriah’s Swallow Study to be successful and the TE Fistula repaired so that we can begin eating by mouth
  • For Uriah to have the drive and want to to eat by mouth
  • For his current case of tracheitis (bacteria in his trach) to be controlled and subdued
  • For his little, upcoming teeth 🙂
  • For Dalton and I to have renewed joy and strength … I’ll tell ya, being separated most of the week for several months is not fun, not easy, and not enjoyable! But, I have to brag on Dalton! Every week, he finds ways to bless and encourage me. He is always finding ways to bring me refreshment even though he is the one working and alone all week. Thank You, Lord God, for giving me such a man!
  • For God’s will concerning private nursing. We are required to have someone awake with Uriah at all times because of his trach so we are applying for night nursing to help as we can’t be awake all the time and live normal, healthy, thriving lives.

And most importantly, thank you for all the love and prayers you have given us. There are days when I still can’t believe I’m not at home … it feels almost surreal to be away from home this long. But you have made this time not only bearable but time to enjoy, grow, and be blessed in. We thank God for you!

With love, blessings, and coffee,

Frannie