Rules To Live By

Hypervigilence is one of the most difficult things about this life with Smith-Magenis Syndrome that we live with, but it’s one of the things I find most people not living the life understand or even know about. I don’t know how other SMS parents cope, but John and I both have Rules To Live By that are on constant loop in our heads as we go through our days and nights with Elsie. Having to stay ten steps ahead of our SMSer is mentally exhausting, discouraging, and it never, never, never ends. Its even worse when we’re sick (with Influenza strain B, no less). Here at what is hopefully the end of our party with Influenza strain B, I’d like to share the Rules To Live By that have been the theme of our last week (though I’ll grant that other SMS parents’ lists may have many more items than ours does):
1. Do not lay in your bed too long or SMSer will come in and systematically take all of the knobs off of your dresser drawers (because you are not giving her enough attention).

2. Do not lay on the couch or SMSer will come and stand in front of you and pick the scab on her chin where she scratched a hole for no reason, all because she knows it bothers you (because you are not giving her enough attention).

3. In fact, it’s better not to rest at all (this is not a “super fun project” and therefore qualifies as not enough attention being given).

4. Move all essential oils, medicines, thermometers, water cups, soup mugs, lip moisturizers, etc to a high up location that requires you, the sick person, to physically get up and reach for them so the SMSer cannot get to them and destroy, empty, dismember, unpackage, partake of, or otherwise mishandle. 

5. Ignore your other feverish and delirious children calling pitifully for you because your SMSer is in the midst of a(nother) meltdown. 

6. Casually lie to your SMSer as you rapidly smear ointment on her chin every hour or two, telling her it looks awesome (force your feverish eyes from dwelling on the emerging hole there, knowing that any undue attention being paid it, sympathy being given, exclamations of horror, etc, will only increase her rate of digging at it).

7. Clean the kitchen faithfully daily so that the stack of dishes doesn’t come close enough to the edge to tempt her.

8. Do not forget to clear the table of dirty plates after every meal or she may come wake you the one time you forget with last night’s chicken stuffed in her mouth and clinging to her lips. (The crumbs on the floor may be left all week, those will not be touched.)

9. Put away or at least unplug all appliances immediately after using them lest the SMSer burn down the house with, say, the toaster. (Don’t forget to take the knobs off your gas stove, too. Been there, smelled that.)

10. Be calm and cheerful as you spend your days getting your SMSer out of the mail, out of the silverware drawer, out of her sister’s face, out of the refrigerator, out of the trash, and so on and so forth, knowing that any sign of weariness or impatience or frustration will increase her frenzy.

11. Pray that you are allowed 6-8 hours of sleep at night whilst knowing that you will be lucky to get 4-6 hours (divided) on which to get well.

12. Watch as the days keep ticking by and you begin wondering if one or all of you will wind up in the hospital and asking out loud how you will get through this, to which your spouse answers: “we just will. We have no other option.”

Matfield Green, KS. 


A couple weekends ago John, Matthew and I left the girls with my parents and drove into the Flint Hills for a little anniversary getaway. John was sick – we ended up driving back into town one day so he could get to a doctor – but still, it was so good to rest and relax, to stay in a place surrounded by beautiful, fragile things and not be on hyper-alert day in and day out for the destruction of said beautiful and fragile things!  We celebrated six years of marriage this year. Six years! Three babies, four moves, and way too few hours of sleep later, I still say it’s been a good six years. I’m glad he chose me. 

I didn’t ask for this.

So often the phrase “I didn’t ask for this” runs through my head regarding Smith-Magenis Syndrome in our lives. Because I didn’t. I’m not one of the people who would willingly adopt a special needs child. I’m the one who, when a special education teacher I worked with in my single days told me I should go back to school for a degree in Special Education, not only disregarded her advice but I quit working in the schools altogether. Not only did I not ask for special needs in my life, I ran from it. It’s too scary. It’s too unpredictable. It’s too hard. I DID NOT ASK FOR THIS. But last night as I bathed Elsie following the first calm family dinner we’ve had in a long time, I looked in her eyes and thought, “maybe I should have”.  Maybe I should have desired the wisdom and strength that will someday come from this hard road. Maybe I should have desired to be taught the hard lessons I am learning from this.

Elsie is a daily object lesson for me on God’s love. His love remains, steadfast and sure, even when we are unloveable. When we fight back, kicking and screaming and abusing Him. When His heart is breaking as He watches us abuse our own bodies, His love continues. And that’s the kind of love He is asking me to have for her. She is a lesson for me in forgiveness. Because the only way we can get up and get through another day together is for us to forgive each other for what happened yesterday and focus on today. She is a lesson for me in endurance and finishing what we start, no matter how hard it is. She is a lesson for me in grace and mercy and sacrifice, of celebrating the small victories and letting go of the big losses. So many lessons I didn’t realize I was signing up for learning when I brought this girl into the world, but here I am learning them just the same. The lessons I should have asked for.

A look back.

2016. What a year! This year has held the lowest of lows for us with the diagnosis of SMS and some of the changes we’ve seen in Elsie, but there have also been some incredibly bright and joyful parts with the birth of Matthew and watching Katie blossom. This year has forced John and I to grow in ways we never imagined, our love for each other and our children has been tested, but grown and deepened. Am I thankful for all we experienced in 2016? In a way, yes, and I’m sure I’ll have a greater appreciation for it in years to come. But I’ll be honest: I’m hopeful that 2017 is much more uneventful for our family!

A good hour.

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Elsie and John are on their holiday break from school and work, so yesterday we bundled up and went for a walk at the nature center a short drive away from our house. The fresh air, exercise and break from routine were good for all of us. Every time we get out and do something like this I tell myself we will do it more often, but the reality of three kids in diapers, three kids not yet independent in dressing themselves, and the stubborn-as-a-mule tendencies of the oldest make getting out of the house at least an hour-long ordeal…and that’s when I have John’s help! I often have to remind myself of that when I inwardly berate myself for not providing more experiences for my kids and for not taking better care of myself physically, mentally and emotionally. Those things seem like luxuries right now. But that good hour in nature sure does make me want to find a way!

Ebb and flow.

I keep thinking that at some point I will reach a point at which I won’t experience new waves of grief. That we will plateau and life will stabilize into some sort of new normal. But that’s not the way life works, is it? And especially not life with SMS. One of the most frustrating things to me about SMS is how highly variable it is. Not only do symptoms vary widely from individual to individual, they can change drastically (over and over again) for each individual throughout his/her lifetime. With each change comes either a thrill of joy for the hurdles overcome or a new wave of grief for the darker issues. Why, by the way, does the grief seem to last longer than the joy? We will become well acquainted through the years, grief and I.

I spend much of my days now trying to keep myself and the two younger children out of Elsie’s reach. Hitting and pinching us are her current preferred activities. The other day John showed me his arm, covered with tiny bloody pinpricks from Elsie’s pinches. On Christmas Day Katie came to tell me “Elsie pinched me,” and there I saw two tiny bloody pinpricks on her arm. Grief. To see the physical marks your FOUR YEAR OLD makes on her family? Oh yes. We are grieving. Behavioral therapy begins next month. Pray for us.

Matthew Jude.

Matthew Jude Roseborough was born September 28th. Involving induction by castor oil, a mama who was exhausted before labor even began, and a 10 lb 14 oz baby, it is most definitely not a beautiful birth story worth sharing here. Suffice it to say, he made it here safely in a home birth as we desired, and that’s enough for me…as long as I never have to repeat the experience! 😄

The girls have adjusted to Matthew’s presence far better and more quickly than I had hoped. Katie has become his second little mother, and an excellent assistant when it comes to his care. The first words out of her mouth after being away from him for awhile are always, “where’s baby brother?” And she still gazes at him with this dreamy look of love in her eyes, showering him with kisses anytime his head is within reach. I love seeing her fierce love in action. Elsie has started asking to hold him occasionally, and will kiss him, but for the most part she simply carries on as though he has always been here. I tell ya, it’s a good little brood we have on our hands!