Not for the first time, I find myself comforting a pregnant momma whose doctors have diagnosed a problem with her unborn child. Prenatal tests and needles have determined her child to be imperfect – medical opinion agrees that termination would be in the family’s best interest. I’ve experienced these conversations before: the doctor provides all of the medical and cognitive complications that very likely will be present at birth. The uphill battle that will ensue for the child to survive, and the imperfections that will remain. I have no issue with doctors presenting the facts for parents to make an informed decision. Families make these impossible decisions every day. My only issue is that doctors cannot inform any parent completely. Their prognosis has no way to include extremely important facts that parents should know. Continue reading
Two years ago I hit “publish” on my first blog post. As soon as I did, something occurred which could never be un-done. I stepped into a new landscape which I had contemplated for several years. I had delayed that moment for so long, because I had not found the perfect timing for it….and I still haven’t.
In honor of the anniversary of making that giant leap, today’s post is about one of the great myths of our generation: Perfect Timing. So many of my friends are currently struggling with the pull or desire to do something or change something, but the perfect timing just won’t present itself. Anyone, in any season of life, can succumb to this vicious cycle, but the special needs mom is perhaps most prone to be defeated by the “I wish I could, but I can’t right now” thought process. Continue reading
Each and every post I write has the same foundation: Redefining the word Special. Seeing that “Special” really is special has changed my life, and has helped me see many other things with a completely new perspective as well. Today I’m talking about redefining, or at least expanding our definition of COURAGE.
“Be strong and courageous” – How many times have I heard sermons or teachings on these four words from the Bible? We recently spent an entire month teaching this theme to our Elementary kids sunday school class. This is one of the overarching messages in the Old Testament for the people of God. Joshua received this emphatic commission before embarking on his epic adventures. King Hezekiah used it in his speech delivered to the people of Jerusalem on the eve of invasion by the Assyrians. But only recently did I discover this instance:
“Then David continued, “Be strong and courageous, and do the work. Dont be afraid or discouraged, for the Lord God, my God is with you. He will not fail you or forsake you. He will see to it that all the work related to the Temple of the Lord is finished correctly.” 1 Chronicles 28:20
“Jesus take the wheel” by Carrie Underwood is playing on an endless loop in my head as I contemplate this post (and now it’s stuck in your head too. You’re welcome). Although it’s a sappy country song, I adore her voice, and I love that chorus. What better response to out-of-control situations in our life? Whenever I feel like I’m in a tailspin, whirlwind or just plain mess, I probably can look down and realize that I’ve totally lost control. Spending a few days this week at a large gathering of special needs families, I was reminded very clearly about the importance of who is in charge. Continue reading
As you may know by now, I frequently contribute blog posts to a site called TheMighty.com. It’s a cool site designed to form a community of individuals with special needs or disabilities where acceptance and understanding take place, and stigma is erased.
They send out a monthly request for stories, with specific topics or assignments. Recently the topic was “Marriage and Special Needs”. I immediately began formulating my response to this request – I am, after all, married. Sounded like a slam-dunk project.
As I wrote, I kept adding more and more disclaimers, apologies, and caveats to the piece. Among my personal friends who are special moms, several are divorced. I have witnessed their struggle, their hard work, their perseverence, and their anguish over every challenging decision. They were so forefront in my mind as I wrote, I was almost ready to cancel the whole thing. I would never ever want those lovely ladies to think that I was somehow judging their provision for their child as less-than.
But then, it struck me. I was apologizing for being married. I was bending over backwards to disqualify my marital status. And that won’t do. My BFFs know I love them, and love their parenting, whether single or married, so I pulled out all the apologies, wrote the article and hit “send” before I could re-read it and change my mind. Continue reading
My heart today is overflowing with gratitude for God’s gift to me of the most special boy. I can’t even describe to you the stark difference between who I was before he came into my life, and who I am now. The world would call him my “typical” son. Oh – that is so mistaken! Continue reading
OK, here it is. The one millionth blog post about Jordan Spieth since Sunday. What? you, my dear friends who spent Sunday afternoon doing laundry, DONT know who that is? Well, that’s ok. Neither did I. Continue reading
Recently while perusing my Facebook stream, I gave my usual overly dramatic eye roll to some quiz about how you rate yourself. Pa-LEASE! Who has time for those stupid quizzes? Then, of course, I quickly gave myself a mental rating without having to suffer through the quiz. (You now can give ME an overly dramatic eye roll). Disclaimer – I do not often lack self-confidence – my initial rating was pretty high. My initial response to any challenge is usually positive and self-assured (you know, glass half full!). But then later that day, alone with my thoughts, I became aware of how poorly I was rating myself on a variety of fronts, throughout the day. You see when I examine the motives of my heart, and weigh all that I know to do versus all that I do, I can be very negative on how I “rate”. Continue reading
Dear “Chromosome 8p duplication & deletion”:
This letter is to inform you that we have decided to let you go. We are aware that when the geneticist originally assigned you to our family, by strapping you around our second child at only 6 months of age, she indicated that you would be with us for life. However, we’ve decided to go in another direction. Continue reading
Ever since I was a little girl, I was just a naturally glass-half-full kinda person. Even the blood coursing through my veins is like a genetically programmed motto: “B Positive!” I’m not sure why. Maybe it’s the way I was raised. It might be because I learned about Jesus when I was very little and just always trusted that verse that says If He is for me, who can be against me? Whatever the reason, being a naturally positive person has been a blessing in my life. I certainly know my share of glass-half-empty people. Inside or outside of Jesus relationships, there are just those people who see the glass as half-empty, smudged, out of style, etc.
Whichever you are today, you can switch to my blood type (figuratively speaking) by simply choosing to do so. Continue reading
I think all of my posts thus far have contained one constant theme: a New Perspective. If you’re new to my blog, take a few minutes to scan through the archived posts and you’ll see the exact same theme a bunch of different ways 🙂 So perhaps I’ve led you to expect that once this lightbulb turns on and you are able to experience a different perspective all will be rosy. Unfortunately, seeing with a new perspective is not like surgically replacing your eyes with new ones, it’s not even like wearing new glasses. You don’t just acquire new perspective and the old is gone, never to return. It is much more like any new (difficult) skill that must be practiced continually, using muscles in new and awkward ways. It is the continuous “renewing of the mind” to which we are encouraged in Romans 12:2. Continue reading
This will be a really busy week for me. Not stressful or hectic, but definitely busy. As I reflect over all the things I’m currently doing, planning, preparing or arranging, it reminds me how Un-Special I’m being. And that makes me really happy!
Sometimes being a special needs mom can become more than just a hat that I wear, but a label that is branded on my heart. In the past, that label has caused me to feel like an alien walking on a planet of unfamiliar creatures. Because my situation is unique, and one that most other people around me can’t even imagine, I am prone to believe I am completely unlike anyone else. That can be dangerous. Continue reading
It’s the most wonderful time of the year! I had decided not to post at all after Thanksgiving. To just let my thoughts and notes marinate for a while, and get back to the blog in 2015. But then Ben said something about it – like it was too long, or I should blog a holiday message – cant remember what exactly he said, but I think he was right…..
Because last week we saw SANTA CLAUS! And I wanted to point that out. I have a few special mommas who read my blog and their kids are a lot younger than my Nick, and the holidays may not feel so festive. Perhaps they bring questions or uncertainties, health or emotional crises, party/travel/gift anxieties, or even uncomfortable interactions with well-intentioned family members. Continue reading
The most dangerous place I ever found myself, was inside the strong fortress that I had built. Early on in my journey, I began fortifying my defenses, brick by brick. If I couldn’t feel anything, it couldn’t hurt me. Of course I didn’t set out to build a fortress, I was just being practical and realistic (two of my “strengths” that often drive others crazy!)
I recently spoke with a mom who is right there, inside that fortress, and I peered over the walls and saw the tears that were perpetually right behind her eyes, and I suddenly remembered all those feelings myself – and wanted to make sure I sound a loud alarm to you all: Tear down the wall! Continue reading
Welcome to Redefine Special. Whoever you are, and why ever you’re here, I’m glad that you found this spot.
I began writing years ago, sensing that it was important to chronicle my journey as the mom of a special needs child. That journaling, which began on a PC the size of an ATM machine, continued in spurts for many years. Only recently did I take the giant leap of publishing my experiences, one small blog post at a time.
This blog is titled Redefine Special, because that is where my journey took me. After the initial highs and lows (and more lows) of having a special child, a great hope, joy and peace eventually broke through. It broke out over everything in my life. I truly had an awakening to what Special is. It’s not a burden to bear, a hardship to contend with, or even something to just accept. The definition of special has been changed by our society and put in “air quotes” – to be used as a euphemism for less than, undesirable, or outcast. My journey brought me back to the original, true definition of the word: extraordinary and particularly valued.
I am writing each post for that one other special mom out there, who thinks she just has to accept her struggle in life, and deal with it. No sister! Follow along with me and you will see, you are so exceptionally gifted in this life. YOU, too, are special!
If you’re not that mom should you read on? Well, apparently YES! The most unexpected part of sharing my story has been the people who are affected by it. Men, women, moms, dads, college kids. People from every walk of life have taken a moment to tell me they are so touched, changed, or challenged by the posts. Because it is a true story of God’s mercy and grace, it is an encouragement to all.
Browse through my posts, which are listed in the left-hand column, or on the home page, just scroll down below this post to see my most recent posts. If you are impacted or challenged by any of them, please leave a comment! You can read the background story of my son’s diagnosis on the page called “Why I’m writing this blog.” I would definitely suggest going back in time to my first few posts if you’re looking to find your own redefinition of something (start at the bottom of my list of posts).
This morning I poured my coffee and sat down to check emails and the first thing I saw in my inbox was a message with the subject line: “Who do You Say You Are?” It was ironic because I had just come up with today’s blog title in the middle of the night and I’m sure this isn’t the answer they were looking for! But that’s ok, because today I’m talking about NOT being normal, NOT fitting in, and why that is GOOD. Continue reading
My heart aches for others to know that special is special, in it’s most pure and true form.
One result of my journey has been a redefinition of the word Special. It reminds me of a passage from Paul’s Letter to Titus, which says that to the pure, all things are pure. The word Special, in the most pure form, means something extraordinary and to be highly valued. The rest of the verse says “…but to those who are defiled and unbelieving, nothing is pure. Both their mind and conscience are defiled.” I can admit that the meaning of special had been tainted in my own mind. Since I was young I knew that special, as referring to individuals who were different, really meant “less than”. Not something highly valued nor extraordinary, but something oddball and abnormal. My own thoughts had been defiled and were working against me to shut out the truth of God and replace it with the perspective of society. I was unbelieving and therefore my mind and conscience were unavailable to received truth and purity. I realize now that Nicolas is special. Very special. He is a unique, extraordinary gift. Continue reading
This week we need to confront something that might be uncomfortable. If you know me, you know I’m a “people pleaser” and that confrontation is the thing I avoid at all costs! So although there’s a part of me that wants to skip this post, here we go. There is a fundamental truth we need to face in order to fully surrender and use God’s perspective completely. I have heard a lot of people, including many well-intentioned Christians, proclaim the opposite of this truth. I am going to show you what I believe is the Biblical, scriptural truth about a very sensitive, misunderstood subject, which is this: God doesn’t cause suffering. He does not inflict illness, loss, or tragedy on people today. It is important for you to know in your heart of hearts that God doesn’t kill children, put cancer in bodies, cause airplanes to crash, or any of the other things we may have heard attributed to Him. I have heard people say “God needed another angel in heaven so he took your baby” or any number of variations on that theme. That simply doesn’t agree with anything I find in the New Testament – the Jesus-redeemeed part – of the Bible. It may appease the grief-stricken mind at first, but I imagine it can easily become a seed of disdain and anger that will fester and grow towards a God who would act so cruelly. Continue reading
It is amazing how laying down your own perspective of things opens up a whole new world that you didn’t know you were missing. When I finally stopped hyper-focusing on my immediate problem, I was able to see so much more. Romans 8:8 took on new meaning for me: “And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” I finally saw what it was really saying. Not, “God will make everything good/ok/all better” but “God works everything out for my good.” So then, in everything, God is bettering me and bettering my situation. That is a huge paradigm shift. He is making me better, making my family better, my marriage better, my friends, community, etc. Not necessarily by answering every prayer or fixing every problem I face. That verse says that within the problems, I am being bettered. Continue reading
I began my “special” journey really mad at God. Subsequently I stumbled upon the concept the God’s perspective was wholly different from human perspective. The concept that what I see isn’t at all what God sees. He is all-knowing of past, present and future while I am befuddle in all three of those. Learning and understanding a concept, however, is not the same as putting it into practice. That’s what I mean by surrender – actually letting that concept guide my thoughts and actions requires a challenge to every natural instinct I have. Continue reading