Everything happens for a reason.
Or so “they” say.
Try as I might, I cannot package Jackson’s journey with Progressive Infantile Scoliosis into a compact “aha! moment” of clarity. God hasn’t revealed to me a measurable reason for our suffering or some cataclysmic event in which I knew THAT was why He brought us through it. He did, however, bring us through it, and I trust that it wasn’t in vain.
The truth is, I have learned a lot. Cliché! I know. However, the lessons I have learned have been anything but. They have been small things, ugly things sometimes. Most certainly, they have been lessons I surely would have never learned by walking a different path. These lessons have been things I never asked to, wanted to, expected to, or tried to learn. They, however, have fundamentally changed me into the person I am today … someone very different (in a lot of ways) than I was three short years ago, before Jackson’s diagnosis with PIS.
Here is goes!
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1. “Ugly” Emotions are Important & Should Be Admitted:
If you’ve ever been through a deep crisis in your life, you probably know where I’m headed with this. If not, thank your lucky stars and continue reading so you aren’t so caught by surprise if these emotions ever catch up to you. After I moved past the initial shock/denial of Jackson’s diagnosis, I was angry and bitter. My negative feelings scared me, surprised me, and seemed to permeate almost every aspect of my life for a long while. Most of my anger was directed at God. I did not understand why God would “allow” something like this to happen to my son. I questioned whether God purposely chose to send such a terrible thing into our lives. I couldn’t pray, I struggled not to roll my eyes at spiritual encouragements, and I shut down my own spiritual growth. My bitterness was mostly directed toward families with “normal” children. Once, while eating lunch at Chickfila with my mom, I admitted it aloud saying, “I hate that family over there. Enjoying their happy little meal with their beautiful, perfect, happy little life.” Even now, writing that down brings back the memories of those raw emotions. They were very ugly emotions. But they were also very critical emotions. As time passed and Jackson’s treatment was underway, they began to slowly subside. And as that happened, I began to recognize them, admit them, and dismiss them. They became “battle scars” on my heart that I could show off to others in crisis. The phrase “it’s normal to be angry” suddenly became real to me, and I was able to empathize at a deeper lever. Also, realizing that I had felt such carnal emotions became an exercise in humility.
2. Be “All In” for the Right Reasons:
Okay, I’m really bearing it all now! I’ve always been a self-admitted over-achiever. Joining a club was never enough. I had to be the President. Sometimes (shocker), both joining and leading were resume builders for me. Here’s the thing: no one voluntarily joins the “special needs” club, and no one climbs that corporate ladder. For once, I was placed into a group in which my natural abilities and tendencies could only help me do good things for the whole. And, what better motivation for being “pure of heart” than the life of your own child? Being active in the Progressive Infantile Scoliosis community (especially through the Infantile Scoliosis Outreach Program, ISOP) has been an absolute labor of love. It has taught me what it REALLY feels like to be passionate and dedicated to a cause. I have finally grasped the concept of “learning to say no” to things that aren’t really important to me. Likewise, I have experienced the true joy of championing a cause in which I wholehearted believe. I very much look forward to “big things” with ISOP. For more information, please visit: www.infantilescoliosis.org.
3. Recognize Your “Information Overload” Point:
Am I type-A? Heck yes! Do I research things ad-nauseum? You betcha! Contrary to what I thought previous to this journey, even I have a point in which too much information is no longer a good thing. This took me awhile to realize. However, now I am really good at recognizing it and removing myself from the situation. At the beginning of Jackson’s journey, I used to read infantile scoliosis forums for hours on end … reading about families discovering tumors, and syndromes, and genetic anomalies. In the end, thankfully, none of these things applied to us … yet I lost sleep over them. As time passed, I began to literally repeat to myself, “I need to focus on our situation and our situation alone. Right now.” I think this lesson in invaluable for almost every aspect of my life.
4. Respect Your Allies:
Poor Justin. That’s all I can say. This lesson took me a very long time to learn, and sometimes I still struggle with it. Let me say that there’s a definite reason behind the sad statistic that “special needs families” have an even higher divorce rate than the insanely high “regular” divorce rate. When you’re going through a really bad time, try to remember that your spouse is on your team. He/she wants the best for your child and for your family. You will not always agree, and you will certainly have unique strengths and weaknesses, but you share a common goal: healing. Or, on less poignant days, just making it out alive!
5. The “Unknown” Makes People Uncomfortable:
This lesson has been painfully difficult for me. It’s still a point of tenderness and a work in progress. To put it bluntly, most people who have not experienced raising a “special needs” child have no idea what you are going through. Sadly, many of them don’t want to understand either. Therefore, you will lose friends (but you’ll make some, too). My opinion is that their lack of experience makes them uncomfortable. And, what do most people do in awkward and uncomfortable situations? They get out of them. “Special needs” don’t just ‘go away’ in a few weeks, they don’t always bring positive news, and they can sometimes become very monotonous. Some friends may be overwhelmed by this, or bored, or feel ‘burdened’ by what you are going through. Let them go. Just like in relationships, there are plenty of fish in the sea.
6. Misery Really Does Love Company:
Okay, “misery” is a terrible word. What I’m trying to say is that finding others who are experiencing your unique situation is imperative. Posting a question to the “Early Onset Scoliosis” Facebook group can almost immediately calm my nerves. These mamas know the right answers! Even better is talking to my friend L*, whose daughter has special needs. Though in completely different situations, L* and I share a bond that I do not share with anyone else. Our conversations are encouraging, non-judgemental, and oftentimes rather cathartic for me. We can seek one another’s opinions, exchange medical information, and even just bit*h about the crappy parts of our job as a “special needs mom.” At the end of a tough day, she gets me and I get her.
7. Pick Your Battles:
Let me just say this: If in response to my telling you about Jackson’s Progressive Infantile Scoliosis you tell me about your cousin’s neighbor’s granddaughter who was diagnosed with scoliosis in middle school and wore a brace for 3 years … and I smile and nod … It was a conscious decision. Through this, I have learned that sometimes it is better to save my breath and change the subject.
8. Doctors Don’t Know Everything:
Granted, I learned this lesson back in nursing school. However, now I know why this is so important to remember. This isn’t about putting down the medical profession. Doctors are brilliant. There are several doctors to which I credit saving Jackson’s life. However, doctors are human. Doctors are busy. Doctors are specialized. I have learned that I AM THE SINGLE MOST IMPORTANT PROTECTOR OF MY CHILDREN, and it is up to me to speak up if I feel something is awry. Never be afraid to trust you “mommy instincts.” Most of the time, they are right. Remember, embarrassment is temporary but regret cannot be undone.
9. Actions Speak:
Bring someone a meal. Do your friend’s laundry. Invite a sibling over for a playdate. Send a card. Remember dates. Inquire about specifics. I vow to NEVER say to someone in a crisis “let me know if you need anything.” Ever.
10. Do Something Good:
Short of hearing the beautiful words, “Jackson is cured,” little has brought me more joy throughout this process than helping other people just beginning their journey. Talking to newly diagnosed families has given me a sense of meaning and purpose. It has helped me identify some “reason” for what Jackson has been though. If you feel you have something to offer, put yourself out there! Don’t be afraid to “let it all hang out.” My blog is pretty honest. I designed it to be that way. Therefore, over the last few years it has become a place where newly diagnosed PIS families often end up discovering online. I have never once regretted sharing Jackson’s story with the world.