When Your Child Looks Different

In 2016 my water unexpectedly broke at 24 weeks landing us in our local hospital. I spent the next 63 days hoping and praying that I could stay pregnant for as long as possible. Those were long, hard weeks.

When you experience PPROM (preterm premature rupture of the membrains) you never really know how much time you’ll get with your baby. There are a million fears that plague you as you rest in bed and experience a high-risk pregnancy.

Add to the fact that we had been told our son had possible facial anomalies and the fear factor rose a million degrees. I worried — what if my baby has a misshapen nose or only one eye? (These were real issues we dealt with as the ultrasound was unreliable and the diagnosis we received can cause such anomalies). What if my baby is rejected by this world? What if he will be bullied? What if … 

That was when God sent this book to my room and began teaching me.


Pumpkin Patch Blessings is written by Kim Washburn and illustrated by Jacqueline East. I love this book because each page has a corresponding Bible verse, gorgeous illustration, and precious fall-themed rhyme.

I cherish this book because it taught me that no matter our physical appearance, disability, or challenge we are just right.

The first time I read Pumpkin Patch Blessings I cried. My worried, weary-worn mama’s heart cried as I read the truest of words:

Some pumpkins are bumpy.

Some are bumpy, bruised, small, or tilted. And some babies are born differently-abled. Diagnosis’ abound, medical complexities exist, and anomalies are something many face.

But that doesn’t mean they’re not right. Every child, every person, is formed in the image of God. That includes your baby, dear mama, who may have a physical impairment. Your baby with Downs Syndrome or severe eczema or Hydrocephalus. That precious soul hasn’t been forgotten or made by mistake.

They were hand-crafted by a God Who cares beyond what we can even imagine.

He didn’t make a mistake … He just chose to make someone extra unique for His glory. Your baby isn’t forgotten — he’s just right. 

I know it’s silly that a child’s book could give me so much hope but it did. It was in that moment that I embraced my child for whoever they would be and however they would be born. So what if my child was born bumpy? We would deal with it. We would love, cherish, and support that little one as they dive into life and find their purpose.

Are you a mama of a kiddo with medical complexities? How have you dealt with the differences you notice? I love hearing from mama’s walking through the same journey! 🙂 I’d love to hear your thoughts! 

Love, blessings, and lots of coffee! 

Frannie

He Won’t Be Little Forever

Just a snapshot of my little hot mess. I promise, he didn’t fall off the ottoman during this process. 😀

Dear mom of young kids,

I know, I know. One more blog post addressed to you, the coffee-driven, alone-time-missing, mass. You who are in the middle of post-Christmas cleanup and credit card statements out the wazoo. Yes, hello, you.

I’m with you. I haven’t a dozen of young children but I do have one. A precious, darling one year old. Sometimes I think he counts for at least two since he currently requires specials cares which involve me dragging around his ventilator, priming his feeding pump, and eye-balling the tiny fists which LOVE to pull out his trach because it is oh, so, fun to make mom get her cardio in. 😉

But really, I understand. Moms are tired. We’re worn down. Even on the amazing, good, organized, low-key days we’ve still got a million things weighing on our mommy brains. It’s exhausting, I get it.

I mean, I’m currently speed writing this. I’m still in my nightgown and it’s 2 p.m. I’m in the middle of trying to keep Uriah entertained while I get the house organized and sanitized since Christmas and a 4 day pneumonia-related hospital admission has me playing catch up.

But there is more to this momhood than busyness, and diapers, and weariness.

Just this afternoon I paused my bleaching and washing to prepare Uriah’s lunchtime meal. When I came close he lifted his darling, chubby arms. Hold me, Mommy. I picked him up and gently laid his tummy against my chest and swayed that little boy who loves to practice tummy time in my arms.

And in those 3 minutes I caught a vision of what might be in the next 30 years …

I imagined laying my head on my 31 year old son’s shoulder; we’re dancing at his wedding. It’s a special day. My son, my Uriah, is grown, tall, and beginning his own life. And there I am nearly 60 years old. I’m probably shorter and fatter than ever but my son doesn’t see that. All he sees is his momma. The woman who loved him.

In the 3 minutes it took to pick up my baby, dance with him on my chest, and let my shoulder get soaked through with snot, I saw what could be. 

One day, our children will be grown. One day, we won’t have littles little enough to embrace on our shoulders. They’ll be bigger, independent, and moving away from the homes we desperately keep for them. 

Dear, tired, worn, frazzled momma. Cherish these moments with me. Cherish the little person you’ve been given because, in the blink of an eye, they will be grown and gone. We’ll never be able to hold them to our shoulders like we can now. I know it’s hard to slow down. I know you have a million-and-one things on your to-do list.

But while you strive to do your best keeping up with life, rememeber to appreciate and enjoy the people in it. <3

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

Parenting is Hard and Holy Work

We’ve officially been home from the NICU for 74 days. Having Uriah safe and in our own little nest has been more exciting and more fun than ever expected. I love having him to kiss and hold and read to at any moment of the day. I love watching his developing milestones take place on my own living room floor. And I adore the moments I catch him smiling because he’s happy in his home.

But motherhood is a lot more than I ever thought it would be. About once a week I find myself having a mini-anxiety session where I ponder the question all mothers do … am I doing enough? On top of that, I fancy having a child who requires special cares multiplies our fear that we are failing our little people.

Eventually, that worry snowballs into a once a month cry-fest where I turn to my husband’s strong chest and sob tears that have to come out. Stuttering cries fill our small bedroom because what if Uriah doesn’t develop properly because of me? Because, as all special need parents know, playtime isn’t just playtime any more; it’s physical and occupational therapy. Eating isn’t about getting your baby to latch or getting them to like all their food groups; it’s about watching for silent aspiration and pneumonia. And every time you run out of the house for thirty seconds to drop the garbage into the bin you run back in because what if your baby’s ventilator disconnected from the trach. It’s rereading the Resuscitation Instructions once a week so you’re as prepared as possible for something to go wrong with your medically complex child. It’s greedily counting the medical supplies shipped to your home once a month and then going to the store to buy all the regular things your ordinary yet not so ordinary baby needs.

It’s so much and sometimes I feel like I don’t measure up.

Mom, if you ever feel this way, I know. I feel all the feels with you. Parenting is responsibility. And special cares or not, it is hard.

The beautiful thing is that this hard thing we’re doing? It’s a God thing. Children are gifts from God; they’re not add-ons to your already full life. They’re not the next step in life. And they are never mistakes. God’s Word makes it clear that our babies are fearfully and wonderfully made and rewards. And if God is in it it is holy. And all that hardness? It’s meant to make you more holy.

So, that baby who is fussing, or that toddler who is out of control, or that teenager who lives a busy and sometimes wildly confusing life, they’re all God things. (He’s also there for all the one’s taking care of an ailing spouse or family member.) It’s holy, hard work but that means God will be in it.

I cannot tell you the times I have seen God come in an lift my weary heart. He did it from the very beginning, during my misdiagnosed miscarriage, through the very scary first trimester, when my water broke at 24 weeks, during my 63 days on hospitalized bed rest, and during the 7 months Uriah lived in the NICU. God showed up and personally walked us through the hardest season we have endured.

And He’s here. God is still walking me through the nights when I feel like I simply didn’t measure up. He’s here, ready to bear my burden and give me grace, on the days when I’m afraid I didn’t do enough.

He’s here and He is more than enough. 

Sweet friend, I know. I know that this blog post isn’t going to fix the anxiety-filled nights or worried-filled days. I know that you can enter the morning feeling like Wonder Woman and go to bed feeling like a stinking pile of failure.

Despite how you feel, I want to encourage you to embrace the truth — that this hard work you’re doing? God will walk you through it if you let Him. And He will let the hard work be holy work if we let Him work in us.

I’d love to hear about your experiences of parenthood? Tell me your stories! I love hearing from you? 

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