I’m thinking about my age, as you can see from today’s title. Since it’s my birthday, my actual, chronological age cannot be avoided or denied. I’m 48. (This post was recently revised, on my 49th!) But I must admit that most of the time I live my life feeling like I’m somewhere in my late 30’s (anyone else?) I honestly forget that I’m “pushing” the big Five-Oh! Over the past few months, however, the impending half-century mark has been on my mind. A lot. Continue reading
“For you created my inmost being; you knit me together in my mother’s womb.” Psalm 139:13
Mother’s Day is upon us!!! As a mom, it’s MY holiday. “Mom” is probably the deepest, most powerful identity that you could find buried inside of me. Giving birth to my children changed me in powerful, miraculous ways and that label is branded on my heart forever: “mom.” Continue reading
H”I run in the path of your commands, for you have broadened my understanding” Psalm 119:32 NIV
if there’s a one word description of my daily/weekly life, it’s running. Now before you get the wrong impression, let me make clear I am NOT a “runner”. I don’t lace up running shoes and head out with my headphones and bouncy ponytail – I see those women all over town and admire/envy them – they’re adorable. I’m talking about running around. Racing from one thought to the next, multi -tasking at light speed between multiple coinciding responsibilities, and our car keeping these winter roads hot between therapy appointments, story time, group activities, meetings, etc. Most moms I know are this kind of runner. Special needs moms just replace the usual running to soccer practice or ballet with doctors, therapies, medications, behavior crisis, etc. Continue reading
“Martha, Martha,” the Lord answered, “You are worried and upset about many things, but few things are needed – or indeed only one. Mary has chosen what is better, and it will not be taken away from her.”Luke 10:41-42
The jar of pickles in this picture reminded me of the most important lesson that this perfectionist-natured person has ever learned. Perfect is over-rated. Not only is perfect over-rated, but I’ve truly learned that when life is perfect, you miss out on all the best stuff. Continue reading
It’s the most wonderful time of the year! Hear me out. I know that the holidays seem loaded with landmines for special kids. They bring questions, uncertainties, health or emotional crises, party/travel/gift anxieties, or even uncomfortable interactions with well-intentioned family members. I’ve been there, friend, my special guy is about to experience all the highs and lows of his sixteenth Christmas. Continue reading
Here I sit, in the Easter Seals lobby. Extra large Miami Dolphins coffee mug in hand, laptop in front of me, headphones on with Israel & Newbreed’s latest song “My Strength” blasting in my head phones.
“You’re the joy no one can take away, You’re the peace inside I can’t explain! You’re the strength I need, you will always be my strength!”
I will admit to you that I am openly dancing in my seat! Honestly, these people are lucky I have enough self-control to not be clapping or, worse, singing along. So much joy right now.
I am not in a party environment. The joy level here is zero. The parent/guardian/caregiver faces are not celebratory. The whispered conversations seem foreboding. I wonder if the passer-bys think maybe my coffee mug has a little whiskey in it for good measure. Continue reading
Life as a special needs mom is about as far away from Royalty as you can get! Remarkably, however, I have found great wisdom within Esther’s pages. How on earth could I identify with a queen? Well, first of all, Esther wasn’t born a queen. She started out as a regular girl with a less than glamorous, even less than average, life. Then, she kept running into extremely unlikely circumstances. Every step of her journey was completely atypical for someone like her. (sounds more familiar now, right?) Yet God designed each of those steps specifically for a great purpose she could have never fathomed. 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
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
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 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