![]() A difficult diagnosis can be difficult to process. There are many "what if" questions, and far too many "unknowns." Some days, particularly early on, can be very dark and sad, and it can feel like you're on an unending rollercoaster ride! I remember early on with Ryker, it seemed like every doctor's appointment we attended led to bad news, or further testing of some sort. "For goodness sake!" I would think to myself, "Can't the boy catch a break?" I just wanted someone, anyone, to tell me "it would be okay." Enter: Dr. Stephen Gutu, Ryker's awesome neurologist at Blank Children's Hospital in Des Moines. Our pediatrician (another amazing doctor) referred us to Dr. Gutu early on, and he and Ryker developed a special bond right away! If you're familiar with Blank Children's Hospital or spend any time there, then you may see Dr. Gutu walking the halls in his famous pair of wooden clogs. Yes, adult male sized wooden clogs. Apparently the kids love them! Now I digress, back to my story... ![]() Soon after we received the diagnosis of Joubert Syndrome, we had a follow up appointment with Dr. Gutu to check in on Ryker's development, discuss Joubert Syndrome, and discuss a treatment plan. I had done my research, I knew what pitfalls to look out for, I knew what delays to expect, and I knew where the risks were. Dr. Gutu conducted his evaluation, looked at Ryker, looked back at us, and smiled. "I see a very healthy, happy little boy here!" He said. I started with my litany of questions for Dr. Gutu, and he graciously answered them. But then, he took us to his office and showed us a large poster hanging there: "In the Beginning, GOD," the poster reads. Dr. Gutu went on to say, "God's got this, and he works miracles every day. So, take joy in his health and happiness, and when he accomplishes a milestone, no matter HOW big or small, you celebrate. If he sits for 1 second, you get a cupcake! If he tracks an object, go out to dinner. If he stands, have a party! Celebrate everything." That, folks, is a prescription we can handle. That appointment with Dr. Gutu was almost a year ago, and ever since then we have celebrated every moment with Ryker. Sometimes the celebration is small, sometimes it's big, but no matter what, it is a celebration, and I urge you all to follow Dr. Gutu's advice and celebrate too! Life is often surrounded by negativity -- just look at the state of our world today! But if we each take time to find joy in the small moments, and find a celebration wherever we can, then I believe the world will be a better place! As for us, now, well, it's CUPCAKE TIME in our household! Here are a few of our reasons to celebrate this week: 1. Graduation from Occupational Therapy every other week to once a month! 2. Isolating his finger for pointing! 3. And THIS amazing feat:
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As a parent, particularly a NEW parent, you're bombarded every single day by apps, emails, charts, and people checking in on how your child is developing. The charts say:
The people say:
All of the information is well-meaning (and important). All of the people are well-meaning too! But news flash, folks, children develop at different paces, and when it comes to my little guy, well, HE DOESN'T COMPARE! Now don't get me wrong, I understand the medical importance of "milestones" and particularly "meeting milestones," but this day and age, when everyone seeks perfection, some of those milestone markers can set up new parents for endless worry! PLUS, in our completely e-connected world of social media, it's hard to not look at other kids and say, "hey, they're talking, should my child be talking?" Or, "I just saw a 9-month old walking, my child isn't even crawling yet, is something wrong with my child?" Facebook can suck you in completely, and I'm not going to lie, I definitely got sucked into the comparison game. Not long after we got Ryker's diagnosis, facing an uncertain future for our baby boy, I got sucked into Facebook and started looking at all of my friends who had babies born at about the same time as Ryker. I would see their babies sitting, I would see them rolling over, I would see them start to crawl. I would see my friends write posts saying, "Oh, this little one is crawling all over now -- she's getting into everything! Can't she go back to when she just laid there, I can't handle three mobile children!" I would cry, I would worry for Ryker, and then I would get angry. "Don't these people realize how lucky they are?" I would think to myself. "Ryker is practicing holding his head up right now and you're complaining about your child crawling!" Some well-meaning friends, upon finding out about Ryker's gross motor delays, would even say, "Oh, be thankful he's not mobile yet, when he's mobile he will just get into everything!" Perhaps they didn't realize that we were praying for Ryker to become mobile JUST so he could get into everything! We longed to baby-proof our house! Soon, though, I realized I was not doing myself, my family, and particularly my son, any good by comparing his development to others and wallowing in self-pity. My friends that were showcasing their child's development were just PROUD of their child -- like any good parent would be! They weren't saying "my kid is better than yours." My friends that were overwhelmed by multiple kids moving around and getting into everything were experiencing the wonderful joy (and stress!) called parenthood, and THAT WAS OK! Yes, Ryker had (and still has) major gross motor delays. BUT when he accomplishes a task -- even one as seemingly simple as holding up his head -- guess what? We celebrate!!! And that celebration is OH SO SWEET!!! Why? Because we see how hard Ryker works to accomplish EVERY SINGLE THING he does, and the joy we feel in seeing that hard work payoff is truly indescribable. So, parents, when you find yourself researching developmental milestones, creeping on your friend's kids on Facebook or Instagram, and playing the endless comparison game, here is my advice: STOP. Just stop. Instead, look at your child, be thankful for the amazing gift you have been given, and celebrate every moment. Your child will develop in his or her own time -- God's time -- and that timing will be absolutely PERFECT....perfect beyond compare. "He has made everything beautiful in its time..." ~ Ecclesiastes 3:11
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AuthorHi, I'm Kasey! Here sharing my heart and my joy, and encouraging others to live With Faith and Gratitude♥ Don't Miss a Post!Archives
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