“Lost time is never found again.”
~Benjamin Franklin

Most everything about Harper’s inclusion in this world was a challenge that took time and patience and love.  I am grateful for the moments when I decided taking the time was worth it, even though it may have worn her and I out for the entire day thereafter.

TIME in the World of CDKL5 (swimming) - Penny Howard

The balance of parenting special needs, my other typically developing children and having my poor husband feel like he was more than just a pay check, while trying to remember we even have a family dog was life changing.  But if you open your eyes and look around you realize you are not alone no matter how lonely you may feel.

Just taking Harper to my parents house 3 miles away was a 30 to 45 minute preparation and sometimes a trip back home by my husband for some necessity that was left behind.  But for the sake of having Harper feel included with her help we “changed the definition of normal.”

I am glad I took the time to get her footprint on a bookmark during Sunday school with the rest of her classmates, the hand and foot print in the plaster stepping stone that took five times to get just right, the outline of her body for our home school science lesson even though I threw it away when we were done, and the hour at chucky cheese helping her spin the wheel and bop the weasels.

TIME in the World of CDKL5 (Ice Skating) - Penny Howard

The last time I remember taking Harper to church she was insistent that she did not want to go in her wheelchair.  Which meant that I had to carry a 36 inch long, 30 pound floppy kid with very little muscle tone for an hour and a half because she wanted to sit like a big girl with the rest of her Sunday school class.  I was so proud of her that day and so thankful that despite my desire to do things the easier way for me that instead I helped her do things her way.

My back hurt, my mind a fog, beyond exhausted physically and mentally; but she was worth every moment. Those memories I will cherish for a lifetime.

So for those special needs parents, who feel lost, alone, and utterly exhausted, you can do it!  I believe in you.  Go back to the basics of kindergarten instruction on the first day of school….”Do not be afraid to raise your hand and ask for help!”

“Life is limited but not limitless!
~Penny Howard

TIME in the World of CDKL5 - Penny Howard2