About seventeen and a half years ago, we were handed a Medical Report by a well-meaning geneticist. The photocopied pages outlined all of the possible (terrible) characteristics/symptoms/complications that would accompany our baby’s new diagnosis of a rare genetic disorder. He was just an infant, yet the report predicted a tragic future.
Our choice that day, and every day since, was: upon which report would we base our lives. We could treat this infant as if he were a disabled person, who would be defined by the limits and difficulties described in the reports. Or, we could believe the report of the Lord. My Bible reports in Psalms 127 that children are an inheritance of the Lord. Psalms 139 says that our Heavenly Father has knit us together in our mother’s womb and we are fearfully and wonderfully made – all of us.
I’m not talking about being delusional, or living in a state of denial. We are aware of the challenges that our little guy faced, and still faces. But we have taken our example from the book of Numbers, when Moses sent out twelve spies to report on the land the God had promised them. Ten of them came back with a really negative report about the challenges to be faced. But two of the spies saw beyond challenges. All twelve agreed it was a land better than any they had seen before with wonderful fruit. But only two spies understood that all the blessings and treasures were completely worth the price of a few obstacles. Further, they insisted, the Lord would surely help them overcome. Unfortunately the masses went with the ten spies, fearing the battle that would be required for such a wonderful prize.
So we base our lives on God’s promises – His report. Just as in the example of the Israelite spies, the prize has certainly been worth the battles. Yes, battles there have been aplenty. But the reward, the treasure, and the promised land are exactly as reported! Our son may have similarities to the original medical reports, but if I’m being honest he is much more accurately described by those Psalms. It’s a choice we make every day, and in the face of every set back and situation. You are just one choice away from a really good report! Won’t that be nice for a change?
And He said to them, “Come aside by yourselves to a deserted place and rest a while” Mark 6:31
This is one of those things that could get me kicked-out of the Special Needs Mom Club. Could garner some frowns, and some quiet “smh’s”. But I’m admitting it anyways, because you need to do it too. I recently left my special guy. For six days. And went to Paris! (cue gasp)
We special mommas are constantly urged to take care of ourselves. Take some time, do something for “you”. But we don’t. We can’t. Sounds good on paper, but it actually doesn’t work. Well, dear friend, you MUST. And here’s the part you don’t realize, it’s for the benefit of your child. No, not because he’ll have a happier or well-rested momma (of course, that’s a bonus). But because – and I know this is going to be uncomfortable – he NEEDS to experience life without you. Continue reading
A special needs mom’s Christmas wish list is far from typical. And it mostly contains items Santa can’t manufacture at the North Pole nor fit under a tree. But I was reminded this past Sunday at church that my wish list has nevertheless been fulfilled.
What’s on your list, momma? Do you need a peaceful night of rest? The answer to an impossible situation? Strength to move a mountain or stand in a storm? A warm, loving, non-judgmental hug? Well, here it is, just for you, and it came on Christmas morning:
For to us a child is born,
to us a son is given,
and the government will be on his shoulders.
And he will be called
Wonderful Counselor, Mighty God,
Everlasting Father, Prince of Peace.
He is all you need. Sounds simple, almost silly, but I promise it is true. Let HIM be your counselor this year, lean on HIS might, know HIS fatherly adoration of you and your child, and rest in HIS peace that passes all understanding.
If I could reach out to every special mom I know, or who reads this blog, this is the gift I would want you to have. Merry Christmas dear friend!
Nick and his school friend Shankar, celebrating Christmas with LOTS of Joy!!
I would like to confess to you a recent realization: I am the product of Special Needs Privilege. You’ve heard all kinds of privileges being thrown around as accusations lately, but this one is probably not at the top of the list. However, I’m now fully aware that such a thing exists, and I’m one of its victims. Continue reading
You know that scene in Finding Nemo where Dory and Marlin are swimming deep into a bottomless, dark cavern? Marlin, Nemo’s Dad, has no idea where they’re going or what will happen next, yet his friend Dory is happily singing “Just Keep Swimming!” The two of them together sum up my special mom split-personality perfectly. Some days I am overwhelmed by changes, unsure of where I’m going and what will happen next. But other days, when I’m at my best, I can happily sing to myself, “just keep swimming!”
This past month has been chock full of changes: Continue reading
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
Psalms 42:7 Deep calls unto deep at the noise of Your waterfalls; All Your waves and billows have gone over me.
I’m a little old school, so I’ve been hesitant to go all-in with Facebook and other social media “relationships”. I define friends as people who I’ve met in person, and over time developed lots in common with via shared experiences. But it’s 2016. I am currently collaborating on a book with a woman I’ve never met! It’s a new and curious experience to encounter people online whose passions, experiences and mission align so strongly with my own. I’m not sure of where she lives, no clue of her favorite food or TV show. But nonetheless, I now count her, and several other FB strangers, among my friends.
I recently submitted our diagnosis story for the new book she is writing, and she edited the heck out of it – LOL! Truly she’s a fantastic editor, I’d love to send her everything I write, but I feel that would wear the friendship thin pretty quickly. Within her editing, however, she highlighted one sentence and commented: “I absolutely love this sentence!!!! Wow. Such a powerful thought, and worthy of a blog post all on its own.” 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
If I admit something to you that you may find shocking, or at least slightly inappropriate, do you promise to still be my friend? Here it is: I love “The Walking Dead” tv show! My guys got me into it during the first season and I’m hooked. OK, you promised, so now you have to keep reading. This blog isn’t about zombies or guilty pleasures. But the title, “Here’s Not Here” is a quote by one of the main characters this season. It’s how he deals with the reality around him of a post-apocalyptic world.
My latest revelation in the special mom journey, is realizing that – for all those early years, the struggle-to-comprehend years, the more-questions-than-answers years – Here’s not Here. Let me explain, with the help of my (least) favorite prophet, Jeremiah. 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
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