Nothing Good Happens After 12 Midnight OR 12 Noon

I saw that wink! The words were out of my mouth before I knew what I was saying…my how the tables have turned!

When I was growing up my dad, aka M.O.O.-Mighty Omnipotent One, used to tell us ALL the time nothing good happens after midnight!  Our curfew was midnight and woe unto you if you missed the deadline. For the most part, I was a good lil girl and complied cuz I love my daddy beyond measure and the silence that would follow an infarct of the rules was more hurtful than the punishment…I’d let myself down. In his quiet and stalwart way, he was teaching us self respect for self AND others and reinforcing it was the action/decision that was made was bad not the person. Of course, as a veteran mom, I now recognize they would lay awake until we got home safely knowing there were all kinds of things that could happen to us even if we were not at fault. Whether you are a parent of a special needs child and you worry about medical issues, financial issues, family relationships or simply a “normal” parent with everyday issues or  one who juggles them all...at the heart of it is love. I also know from firsthand experience that when you juggle special needs x2 kids and your senior parents the love and need to nurture is even more present!

I happened to have parents who by sheer will of force on some occasions were gonna make us tow the mark or ELSE.  Every family has stories that get regaled and embellished over time but the love is always there in the telling! I ramble on about this part of my life because while you are in the midst of raising your child with SWS and their siblings you are worrying and celebrating from both sides of the parenting aisle.  It hit me when I was flying home from a recent visit to Montana with mama n daddy that when I said those words “I saw that wink”, the tables had truly been turned and that lil karma as THEY say can be a force to be reckoned with to be sure.

It’s not easy being a parent…can’t be faint of heart if you want to raise a respectable adult who won’t be a burden on the family or society. It takes lots of planning. It’s even harder when raising a child with a rare disease like SWS…so many unknowns! I struggled between worry and faith about Kaelin every step of the way and still do today much as my parents probably did and do for me but let’s face it worry is a wasted emotion and shows a lack of faith.  There is always a balancing act of empowering your child(ren) to have the best quality of life and independence they can while ensuring  they maintain self respect and safety in and out of the home.  This doesn’t change at any development stage or age!

So, with my mama’s lil wink to daddy about driving somewhere I thought they shouldn’t, I made a decision and decided nothing good happens after 12 Noon!!! If it was good enough for them to not worry, it’s good enough for me too. The deeper the love for someone it makes the “letting go” so much harder whether handing the keys to your new teenage driver, coming to grips with the path your SWS diagnosis has taken or preparing yourself to say the final goodbye to the only compass(es) you have known who will always love you unconditionally!

Planning and communication are key whether you are raising a special needs child, “normal” child or planning for your parents age related issues. I urge you to take time annually to check in with your spouse and children to say “How we doing?” Seek outside input too. Say “I love you” every day in every way! Exhale. In the blink of an eye, you will look back and marvel at how you got here.

I love you every day in every way!

With faith hope and love,

Karen