This is my photography space, but today I’m sharing about something close to our family. I debated for the longest time whether I would write this post. It’s a post I never thought I would write, for something I didn’t know much about before February of this year. September is Hydrocephalus Awareness Month, and I’m posting this just in time on the last day.
There are so many things in life that can come at you unexpectedly. My husband and I were excited to add to our family right away and we couldn’t have imagined it would take us until just after our 4th anniversary to find out our prayers for a little one had been answered. I thought I knew what it would be like. I spent years dreaming and then 9 months imagining what it would be to meet our baby for the first time. We came face to face with our precious love at the end of April, 2014 and truly there is just no describing that moment. They placed that sweet, sticky baby in my arms and I thought my heart would just explode out of my chest with overwhelming gratitude and joy. And then watching my husband love on his son…just nothing could have prepared me for that. I will often find myself slip back into those sweet memories of meeting him for the first time.
There are so many things I wasn’t prepared for when I became a mama, but the biggest shock came earlier this year when we found out that Owen had hydrocephalus. It was such a scary word when I first heard it. It conjured imaged of hospitals and doctors and tests and specialists. We had no idea what we were dealing with, but we were so thankful to have an incredible and knowledgeable family friend who both helped us understand, and helped care for our boy during his hospital stay. I will never forget what it felt like when the time came for me to hand over my baby to the nurse who took him back for surgery. I watched her walk down the hallway and as the double doors closed behind them, I felt like my heart was being crushed in them. I had to let go and let God take care of our just shy of 10 month old. The rational part of me knew he was in incredibly capable hands with an amazing doctor and staff, but my heart wanted to jump through those doors and snatch him back. I pleaded with God that everything would be ok. I am so thankful for all those who prayed for him (and for us) and especially those right there in the waiting room, sitting with us during the longest wait we’ve ever experienced. Finally they called our names, and it was over. We were able to go back and see him as he woke up and the reunion was well worth the wait.
Two weeks. It was just two weeks from when we first heard the word, hydrocephalus, to the day he had his surgery. We were stretched more than we thought possible with appointments and MRIs and the uncertainty, but God brought us through it all. I am so aware that many families have to wait much longer and for that I am grateful for how things turned out. That we were able to get him taken care of sooner than later. We found out just how strong our little guy was too…he endured so much in that two weeks and he has shown in the months since surgery just how determined he is! I look at him now and I cannot believe how much he has learned! With help from therapy and hours of practice, he is crawling on all fours, cruising along the furniture like he’s been doing it all his life, and we’re working on standing unassisted. To see him grow and develop and understand and laugh and play makes me so incredibly proud of all he’s accomplished!!
I remember every emotion in that two weeks, but it’s all less scary now. I’m always going to get a little more nervous than normal when he gets a fever, and he may have to fight just a little harder for the milestones others take for granted, but I know he’s stronger with this as his story. We all are. So today we wore blue. Blue for hydrocephalus awareness and so others will know a little bit more about the condition that rocked our world earlier this year. The hydrocephalus awareness site says that this month is to honor and celebrate those living with this condition and that is exactly what we want to do. We want to celebrate his life and how far he has come!! He’ll live with this forever, but when I look at him, I don’t see this condition. I see a brave and smart, funny, curious, handsome, little snuggler who loves smiling at people, and who can melt you in an instant with his smile. I am so so proud of this sweet, brave boy and I am so beyond blessed that I get to be his mama. My husband and I are pretty biased of course, but we think he is just the best ever (; We try to live every single day with gratitude, because you never know what will happen today, tomorrow or next month. We know how blessed we are that God has taken such good care of our family, and we pray for all the little and big people who live with hydrocephalus. We do know that God is in control. We know we can face the challenges. We pray to have the courage in difficult times, to find joy in the little things, and to take nothing for granted. I am so excited to see how God will use our sweet Owen to do great things as he grows. He is such a joy to our family, and we wouldn’t trade one bit of the journey we’ve had so far.
“In this world you will have trouble. But take heart! I have overcome the world.” John 16:33
Hydrocephalus comes from the Greek words hydro meaning water and cephalus meaning head.
Hydrocephalus affects a wide range of people, from infants and older children to young, middle-aged and older adults.
- Over 1,000,000 people in the United States currently live with hydrocephalus.
- For every 1,000 babies born in this country, one to two will have hydrocephalus.
- Hydrocephalus is the most common reason for brain surgery in children.
- It is estimated that more than 700,000 Americans have NPH (normal pressure hydrocephalus), but less than 20% receive an appropriate diagnosis.