Life X 1000

Have you ever been left off the invite list of a popular social gathering because of your special needs children? ***

Do you know what it is like to be stared at when your disabled child screams with stiffened arms and legs for ten minutes in a restaurant?
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Have you ever listened to a passerby in Target exclaim loud enough for you to hear: "That child just needs a good spanking!" while your child is banging her head against the buggy and crying her eyes out?
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Welcome to our world. And the little mischief maker in the picture above is the culprit. Ha! Ha!
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Hopey is such a complex bundle of so many different things. On top of three open heart surgeries that have left her with an unpredictable and inoperable aneurysm in her heart, she can't see worth a darn and refuses to wear her glasses most all of the time, she is non-verbal in the human realm though seems to speak in tongues occasionally with the unseen angelic realm, her pigeon-toed feet produce frequent stumbles resulting in little purple bruises that decorate her tiny shins, and she has sensory integration issues causing unpredictable meltdowns lasting anywhere from five minutes to fifteen that can include throwing things, pulling the hair of whoever is nearest, or curling up into a fetal position in hope of escape.
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I guess after completing the above list, I can sort of understand why we are no longer on the party circuit list (at least where family gatherings are concerned). Now, for a moment, imagine you are Hopey. Yeh, that's right, for a brief few seconds, put yourself into her little nicked up stride rite tennis shoes. Can you feel it? Can you sense what it must be like to be overwhelmed by your surroundings to a point where you feel you must either lash out in despair or do your best to hide from it all?
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I was discussing all of this with Charlie's speech/feeding therapist this week when she suddenly jumped from the table and began to rummage through a drawer. Within seconds she stuffed a booklet in front of me and said: "You have to read this!" Here is what it said:
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"This letter is written to all the friends, extended families, and neighbors of parents who have a child with Sensory Integration issues (SI). I have one piece of advice for you. The next time that you are tempted to comment or offer advice on their response to that child---DON'T!!! You see, unless you are an SI parent, or have lived with an SI child, or perhaps studied Sensory Integration Disorder exclusively for several years, there is no way you can fully understand what is happening in any given situation.
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For an SI child, it is living LIFE X 1000. Every single sensation that they experience is multiplied over and over. It is walking out into a bright sunshiny day and being blinded by the light; not just for an instant, but for the entire time you are outside. Not just once in a while, but every time you go outside. Every day. All the time.

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It is hearing a sound, any sound, all sound, and every sound like it was a boom box on your shoulder that is turned to BLAST volume. Every day. All the time.
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It is constantly being aware of every piece of clothing that touches your body. Did you ever have a pair of pantyhose or a necktie that drove you crazy? You just couldn't wait to get it off. That is somewhat how an SI kid feels all the time. Most would gladly live in the nude.
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Temperatures are extremes, smells are extremes, and some SI problems cannot be fixed. The best you can do is teach a child to respond to life and its sensations in a less that "X 1000" response. SI kids can and will dissolve into tears in an instant, or screaming meltdowns at what appears on the surface to be the slightest provocation. They can also sense the feelings of those around them and have an uncanny sense of feeling another person's sorrow. They can feel when they are being judged or rejected, when not a word has been said.
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It is a long uphill battle for parents of SI kids. First they must learn to experience life and the world as their child does. Then they must teach their child to respond to it in a way that is "socially acceptable" and a way that does not harm their child in the process. This is not easy and these kids do not come with an instruction manual.
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It is easy to spot an SI parent, however. They have a haggard look and their eyes often fill with tears. Tears of exhaustion, frustration, self-doubt, and fear.....but most of all, tears of amazing love for this amazing child God has given them.
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So next time you are tempted to offer advice or criticize----JUST DON'T! Instead, give them a hug and offer a prayer for them. Pray for endurance, energy, understanding love and a training manual."
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(the above letter was written by a grandmother of an SI child)
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Can any of you relate??? Whew. Now throw Hopey's "non-verbal" on top of the SI issues, and our life looks eerily similar to a train wreck at times. As a family, we are left to look into Hopey's big ole eyes as she is melting.....and when we detect "fear" in those eyes, which is often the case when we transition from one public place to another, we hold her tight, speak assurance into her sweet little ears, and ignore all of the stares from onlookers until she works through it. In time, we have been told she will learn to manage it all, but right now, she is still a beautifully raw and honest five year old work in progress.
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It is funny how a lesson can be learned by everyone in everything when our hearts are in tune to the Lord....you see, Hope isn't the only one being "taught" on this SI journey. Through this experience with Hopey, God is teaching our family a tremendous (and difficult) lesson in perserverance and patience. While it would be easier to never take our little angel out into public, without shaking up her routine with different sights, sounds, tastes, smells, and textures....she would never learn to cope. As a result, each time we gather her up in the van to take a trip to the grocery, to Target, or to a restaurant....we know what we are headed for....and we know the odds most often stack up in favor of a meltdown. But we go. We perservere. We push forward for Hope's sake.
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Perhaps the biggest lesson has come as I have watched our older children deal with Hopey. To see our sixteen year old son and two twelve year old daughters rush to rescue Hopey during her meltdowns without considering the judgment of peers who often surround them in public places, is a constant reminder of their pure love and outrageous compassion for the little sister many would consider broken and disregardable....truly, their love for her outweighs every other consideration in their lives. "Don't you get tired of that?", one friend might ask after watching Caleb, Lydia, or Natalie's hair being pulled during a meltdown. Ears sharp, but without looking their way, I have heard each of them say more than once: "Are you kidding? I love her!"...and their love for Hope is a constant reminder of God's love for me (and for you).
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How many meltdowns do we have as we bow up and refuse God's way in order to choose our own? How many times do we miss His love because of all of the distractions around us? Sometimes we lash out and sometimes we want to curl up and hide. Others even taunt our faith by asking: "Don't you get tired of that?" But God doesn't give up. His love reaches beyond what we can grasp---and eventually, we come around and see clearly that we can trust Him in the midst of the storms of our lives. The storms never go away, just like Hopey's SI will never completely go away...... as Hope learns through experience to trust her family in every situation..... we, too, learn to trust our Father. Perserverance is the key that opens the door of Love.
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When God brought Hopey into our midst, He brought a training stick in the form of a little girl with an extra chromosome who lives "Life X 1000"!