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
Foreword: When I first started blogging I was a frequent contributor to a site called TheMighty.com.
They would send out a monthly request for stories, with specific topics or assignments. One of the first posts I wrote for them was in response to their request for Marriage and Special Needs. The reason I’m giving you this foreword is because this post was written for a secular website. You’ll notice the absence of my usual scripture references. However, it is most definitely a biblically based testimony of God’s goodness and the benefits associated with following His principles. Please let this encourage you in your marriage today.
Being married or staying married or leaving marriage are all very personal and sometimes painful topics for anyone — and more so for special needs families. I’ve seen statistics that go up to 80 percent for the special needs parent divorce rate. I’ve met gorgeous moms whose husbands walked out of the labor and delivery room and never came back. I’ve seen marriage after marriage disintegrated by the overwhelming challenge of having a special needs child. When I survey the landscape, marriage and special needs kids seem to be like oil and water.
I often wish I could shout from the rooftops that special needs parenting can bring you closer together rather than drive you apart! My special needs son has often been the glue that has held my marriage together. I believe that having a child with special needs can be the bond that holds you and your spouse tighter and closer, when all else in life falls apart.
I’m not saying my marriage has been perfect. Honestly, it’s been on the brink of disaster as much or more than any marriage that has endured for 26 years. And I am not even saying that the added stress of having a special needs son didn’t add fuel to those disaster moments. However, I am saying that in those moments, there was one specific incentive to just hold on for one more day, and that was our special needs son, Nicolas.
We’ve been special needs parents for almost 20 years and I believe that our joint love for our son now binds us to each other in a way that is stronger than any force that could come between us. When my husband and I cannot see eye to eye on anything, we have a common thread that only we two share. There is one thing, one undeniable experience that no one else in the world can or will ever understand: being Nick’s parents. Over the years, even when we disagreed on how to parent Nick, the shared journey continued to push us further down our unique path. He is our marriage “secret ingredient.”
Here’s my advice: You can choose, each day, to be on the same team or not. There is enough coming at you — plenty of opposition — and you don’t need more inside your own home. You have only one other person with whom you can choose to side, huddle and share those thoughts and fears that no one else will ever comprehend. The sooner you get the “same team” mentality going, the sooner you’re on your way to overcoming any obstacle.
Let’s face it, our perspective on life is unique. We know that the little stuff is basically anything else that isn’t related to our child. So the toilet seat position, the dirty laundry on the floor, the working late or financial struggles that might cause others to lose focus, should seem (because they are) so miniscule to us, that they don’t even affect us. We might disagree on everything, but we must agree on one thing: wanting the best for our child. Does this apply to every parent? Well, I would say yes — we have a typical son as well, and we both want the best for him. He, too, is on a unique journey, but it is one that he does and will take on his own. He’s been an independent, smart, fully functioning guy for a while now. We “contribute” to his success, which is different from our special son, where we very literally “determine” his success, now and in the future.
We long ago put aside the “me vs. you” and picked up the “us vs. the world” mentality. Not only has it served our marriage well, but it has also been true as we journey through special needs parenting together.
Parenting a special needs child together with your spouse can become the most wonderful experience the two of you will ever share. It can create an indestructible bond that will hold you together in the face of every adversity. Together you will face mountains and climb them together, helping each other along the way, so that when you reach the top, you have a friend by your side to admire the view.
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
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! 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. A few years back I took a giant leap of publishing my experiences, one small blog post at a time. And just recently I published my first book, Bundle of Joy.
This site 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.
My purpose for writing and speaking is to reach any 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 blog posts, order my book and/or follow me on Facebook. 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
Soon after receiving a devastating prognosis for my baby, I was introduced to a concept that eventually changed everything – my whole life, not just the specific circumstance I was facing with my son. I ran across this concept in a much bigger story than mine, in the book of Exodus.
This story begins in Exodus 3 where we find Moses walking through the desert. Here’s my super-condensed recap of what preceded this walk in the desert. He has run away from the luxurious life he had known since childhood. As an infant he was marked to be killed but then miraculously spared by a princess and raised as royalty. Then, as an adult he is pulled emotionally back to his roots, perceiving for the first time the cruelty being imposed upon his people and he chooses to flee to the desert. There, I would imagine, his plan is to live out the remainder of his life in anonymity and tranquility. So while contentedly walking his sheep through the afternoon sun, he sees in the distance a burning bush. As he walks toward the bush to get a closer look, God’s voice audibly calls him by name “Moses!” and when Moses replies “Here am I” the voice says:
“Do not come any closer. Take off your sandals, for the place where you are standing is holy ground.” Exodus 3:5 Continue reading