Lessons Learned from Our Journey with an Unexpected Diagnosis

Today marks the one year anniversary of Thomas’s surprise cataracts diagnosis. While I’ve posted many positive updates about our little man’s miraculous progress over the 12 months, I can honestly say we’ve never endured a more difficult year. Admittedly, I have kept a very positive outlook on the blog since his diagnosis. However, behind the screen our family has gone through a rollercoaster of emotions: grief, hope, anger, devastation,
confidence, anxiety, worry and more.

There is nothing more terrifying than learning your child is among the .04% of babies born with an unexplainable diagnosis and the emergency medical decisions you are forced to make with no information or understanding. Then comes the whirlwind of frequent doctor visits, second opinions, third opinions, fourth opinions, late nights of obsessive researching, patching, eye drops, contacts, additional surgeries to prepare for and more. We
are constantly worried about Thomas and his future despite the four opinions from doctors who predict he’ll live a
normal life with some inconveniences and limitations.

I am fully aware that our circumstances could be much worse and there are many parents struggling and coping with cancer, wheelchairs, heart defects, premature babies, down syndrome and more. Unfortunately these devastating medical diagnoses are all too common and I honestly can’t imagine what these families are going through. However, a wise friend told me at the very beginning that just because my family isn’t struggling
with a worse medical condition it doesn’t make our unique journey less significant or less difficult.

I hope and pray you don’t ever need the advice from this post. However, over the past year I’ve received many emails from readers currently staring down the barrel of a scary medical diagnosis, many of which were unexpected, with their child, a child of a close friend, or family member. I am always deeply humbled when these readers reach out to me for advice, encouragement or inspiration. Oftentimes I’m truly at a loss to find words to bring comfort to parents struggling in their own battles but today I’m going to share some raw feelings and 3 of the biggest lessons we’ve experienced along the way so far.

But first, a huge hug to you if you’re on a difficult journey!

1. Expect Ups and Downs. Even though we have settled into our new normal, this journey still  drags us through some ridiculously low places at times. Receiving any sort of unexpected diagnosis, especially a rare condition (with very little research available), is devastating. Make sure to honor your feelings as they come. You will undoubtedly grieve. You will cry. You will be angry. You will be terrified. We’ve learned to take things day by day and mostly vacillate between ridiculous optimism and profound sadness. But, in time the shock began to fade and we now have more good days than bad. Also, Matt and I don’t always experience the same emotions simultaneously so it’s important to recognize when your spouse is struggling or spiraling down a rabbit hole of emotions. Additionally, for me Thomas’s diagnosis came with a unique layer of mommy guilt too. I’ve been told over and over and over again that there is nothing we could have done to prevent congenital cataracts but I’ve spent my fair share of nights scouring the internet wondering what I did wrong during my pregnancy. 

2.  Trusting God’s Plan.
I’ve always strived to live a joyful life and previously considered my faith unshakeable, using obstacles to spiritually strengthen my relationship with the Lord. However, there have been periods of time over the past year where I gave up talking to God. In fact, Matt and I even stopped attending church shortly after Thomas’s diagnosis. It seemed insincere to choose faith and joy while actually crumbling in the inside. I can’t tell you how many times I’ve been told “God gives His toughest battles to His strongest soldiers.” While there may be some truth to that, trusting God’s plan and choosing joy takes time. Over the past year we’ve refocused our perspective to see the blessings in our journey — Thomas is a strong, resilient little man, and he makes me a better and more empathetic mother. It is a hard calling but God has done us a favor because of the depth and perspective that we all now have because of our precious son. We are learning that our whole lives have been preparation for us to raise our sweet Thomas with all that entails. 

3. Ask Others to Pray on Your Behalf. During those times you can’t talk to God, ask your prayer warriors to help carry your burden through prayer. I am so blessed to have friends who routinely check in to let me know they are praying for Thomas, for me, for my family, for our doctors, for the next surgery, for the recoveries, for Thomas’s future and more. These prayers have pried me out of some dark places and replenished my spiritual strength when I needed it most.

In conclusion, despite the pain and grief you may be facing as a result of unexpected news about someone you love so much, remember that every single day is a gift. You are prepared (more than you know) to be the parent of this amazing little person. And that amazing little person, and his/her siblings, are learning to be strong just by watching how you tackle the daily journey.

Hang in there dear friends. Easier said than done, I know.