Get yourself some “but” 

But we have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where our forerunner, Jesus, has entered on our behalf. He has become a high priest forever…. Hebrews 6:19-20a

The most comforting thought I can conjure, is that God’s plan for my life is to give me hope and a future. Lots of people quote Jeremiah 29:11 because of it’s promise of prosperity or protection. I must say that as a mom whose baby’s future is so uncertain, hope is that one thing I can’t do without. there are days of setbacks and challenges when I can’t imagine one good reason to get out of bed! Hebrew 6:19-20 says “But We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where our forerunner, Jesus, has entered on our behalf.” I emphasize the word “but” there because it is actually one of my favorite words in the Bible. (super weird, let me explain)
I love how the authors of the Bible used that little conjunction over and over again: they spell out a dire situation, a negative prognosis, a disaster waiting to happen, and then they write my favorite three letters “but”. Everyone from David, to Queen Esther, to the new testament apostles had their “but” moments. I like to think of having Hope as always having a “but”! Praise the Lord, I can recite for you endless stories of how things looked bad, but God. Let me make clear that this applies to every area of our life. Having a special baby impacts everything. The ripple effect of a diagnosis rocks it all. Some of my “buts” include: 

  • My marriage was almost over, but God redeemed it. 
  • Our financial crisis was about to drown us, but God made a way for us to overcome. 
  • My child was given a life sentence of despair, but God substituted it for a life filled with joy.

Because all things work together for the good of those who love God, our marriage crisis actually made us so much stronger. The financial crisis pushed us to Biblical financial wisdom that changed our future. The genetic disorder that should have stolen my child actually gave me one that was more than wonderful. 
There is always hope in Jesus, because we are guaranteed that every situation has a “but”! There is an anchor for my soul, which makes it firm and secure. Jesus is my high priest forever, which means He is my perpetual “way where there is no way”, He is always the answer to every unknown. He covers me, provides for me, intercedes for me in advance, before I am ever even aware of a need. 

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Lean In: Whatever you are facing today, try writing it down or saying it outloud not with a period at the end of the sentence, rather conclude with these three letters and a few leading, promising, hopeful dots: but…..

The Striking Similarity between Special Needs moms and a Queen

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

Courage to Keep Up the Daily Grind

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

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The “M” Word

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.

The OTHER Special One

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

Going in Circles….On Purpose

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

Perspective is everything

Nicolas enjoying some sand

Nicolas enjoying some sand

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