Wednesday, September 14, 2016

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. 

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17 comments:

  1. Thank you for sharing your heart. Continuing to pray for you and your sweet family as you tackle all the daily battles. You are such a light in this corner of the internet and am so blessed by you sharing your every happenings.

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    1. I totally agree with Kelly. Your light and strength is absolutely inspiring!

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  2. Thank you so much for sharing! Your faith shines through all your trials. I used to always hear that God won't give you more than you can handle but that's not true! God gives us much more than we can handle and that's why we need to lean on Him. I've often wondered in difficult times why God chose me, because I didn't feel I could handle it. I realized that is exactly why God chose me, so I could lean on Him and my faith, and exemplify that to others in the process. I definitely see Him through you, your family, and your blog!!!

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    1. I completely agree. There are so many idioms that are portrayed as "Christian" that are not at all biblical. As far as God gives His toughest battles to His strongest soldiers, I always think of 2 Corinthians 12:9. It is during trying times that we are able to clearly see the dependence we have on God, and how futile our own plans are.

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  3. I teared up a bit at that advice from your friend! I wish someone had said that to me. My daughter has a chronic vomiting condition which causes her to have flu like symptoms every other week or so. All the vomiting leads to dehydration which sends us to the hospital fairly often. I always feel SO guilty complaining, or being upset, or feeling stressed because I know there are kids SO much worse off then her. But some days it's still really hard to see her in so much pain and I just want to vent.

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  4. Such an honest and emotional post my sweet friend. I have been praying for you through this all (amongst other times) and I am so proud of how strong you have been. It is so normal to feel all the feels with times and situations like these - we have been rocked by a few tough times too and these three points are so important.

    Sending you so much love and our prayers x

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  5. I admire you so much!!!!! I appreciate your candor and vulnerability through all this. God certainly gives us much more than we can or ever would've wanted to handle, as a a chance to lean on Him more fully. But of course by default that means it naturally SUCKS to experience! You are a rock!

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  6. Wow so many tears! This is the exact reason I love reading your blog... So much optimism yet real life moments. I don't have any kiddos yet but we battled infertility and I was downright angry at God, angry at all the people that sneeze and get pregnant, angry at the world. I quickly re-directed my focus and the Lord walked me through every step of IVF and we are now 15 weeks pregnant with our miracle baby! Thomas is SO lucky to have you as his momma <3

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  7. I've never commented on your blog (or anyone's for that matter) but I'm a longtime reader. Thank you so much for sharing this. My 7 week old was diagnosed with an incredibly rare congenital condition at birth and is undergoing surgery today. I admire your optimism and honesty so much and today was the perfect day for me to read this.

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  8. I have a dear friend who I think needs to hear some of these inspiring words and am sending this post her way this very moment. You have a beautiful and admirable perspective on life friend; keep shining bright!

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  9. Thank you so much for sharing. I can't relate personally, but I know that there are many who will need your words of encouragement and honesty. I love the light you shine for Jesus :)

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  10. You are so inspirational the way you write! I haven't personally experienced anything near what you have but I really think it's great how you put it out there and even though I'm sure you have endured more than deserved, you have such a positive attitude, it's so refreshing!

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  11. I love your blog and though I've never commented, today I just had to. I delivered my son in May at just 27weeks gestation. He's been home with us for 5 weeks after a 13 week stay in the NICU and several brain surgeries. He's doing well and we are giving him all of the support and love he can handle but not knowing what his long term outcome will be is really terrifying. I try my best think positively but, well, you know how it is. Some days are better than others. "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." Thank you for these words. I will carry them with me. Best of luck to your sweet family!

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  12. Christina, this is a great post! Our 8 month old daughter was diagnosed with Infantile Spasms in July, and she also may have Cortical Visual Impairment (no one seems to know). We have no idea how much vision she has or will have in the future. She may always be legally blind. All of the medical stuff (appointments, research, phone calls, chasing doctors) feels like a full time job unto itself and my husband and I work full time jobs in addition to taking care of our daughter ourselves (she is not in daycare). We worry all the time that we're not getting her what she needs to develop in the most normal way possible for her, despite having several different therapists coming to the house weekly, plus seeing multiple doctors. I'll go from feeling like we're doing everything we could possibly do, to feeling like we're complete failures from one day to the next. We're not ourselves religious but asking our religious friends and relatives to pray for our daughter was helpful just because it's comforting to know that they're thinking of us and wishing us well. We're hours away from any family so it makes them feel good, too, as praying for us is really all they can do to help right now. I blog about our experiences over at www.gooberpeastheblog.blogspot.com . All of your posts about Thomas have really helped me feel like we're not the only people in the world going through something like this, it can feel so isolating!

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  14. You guys are doing such a great job! And your 3 points above are spot on. There will definitely be ups and downs along the way, but your faith and friends and family will always get you through. If my husband and I didn't have such an amazing support system, I don't know how we would do it. Blessings to you all!

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