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What goes up…

Posted on Oct 2, 2014 by in Blog | 0 comments

I don’t have to tell you the rest. I think you get the picture. 

As I write this, my head is threatening to explode. Well if not my head, then definitely my tear ducts. You see, Pepper is lying on the floor right now in a deep un-wakeable sleep. She just had another seizure. Last night, little miss was up all night, fussing and crying and trying to get out of bed. This was after two days of intermittent seizure clusters. When Pepper is awake, Daddy and I are also awake. Neither one of us has slept much the past week, so emotions are running high. It has come to the point now, where I just cannot bring myself to answer that simple well-meaning question: “How are the kids?”. I don’t want to tell you about how wonderful it was to have a three week break. I don’t want to make promises to you that my baby girl is all better now. Because it simply is not true, and it just breaks my heart each and every time. 

We suffer the agony of checking Pepper’s breathing every 5 minutes because we are worried this seizure was the last (Sudden Unexplained Death in Epilepsy).  And the anxiety of missed therapy appointments because her body just didn’t want to cooperate. Still more, the anxiety of missing work for multiple appointments, or being too tired to focus on important tasks, or trying to remember with our heads in a complete fog, did I pay that bill on time? The sad thing is, even when these worries are not there, I have new ones that take over to replace them.  Worries such as, will my daughter be safe in a special needs class?  Will she have access to all the care she will need? Who will look after her when my husband and I are gone? How will my husband manage when I am gone? Because let’s face it, I am going to get rubbed out first with the weight of these problems eating away at my insides. Stress accelerates just about every known cause of death there is. Think about it. Cancer – Stress, Heart disease – Stress, Car accident – Stress, Alcoholism or Drug abuse – Stress. No one lives forever, but speeding up the expiry process isn’t exactly a good thing.

I have been up and down about coming to terms with Pepper’s special needs. It’s a difficult dance when you have child with an undiagnosed developmental delay. When doctors cannot tell you what is causing your child’s delay, you think, ok, does this mean she will improve? Something will click and she will suddenly be miraculously caught up?  Recently, I was asked to assist with developing an Individual Programming Plan (“IPP”) for Pepper to help work on some goals at therapy and daycare.  I might as well have been asked to write a post doctoral thesis on the neuropathology of epilepsy, because planning goals for Pepper felt a tad overwhelming. My goals at this point feel heartbreakingly unrealistic and I berate myself every second of every day for sounding like I am losing hope. I want my daughter to walk. I want my daughter to talk. I want my daughter to feed herself, and be able to protect herself from the evil in this world. I want her to make friends and have parties, and be chosen for outings with family and friends. Most of all, I need her to be healthy. I don’t just want it, I need it.  She deserves nothing less.  So with the task of developing an IPP for Pepper, I did what any exhausted and overwhelmed parent would and should do. I asked for help. The one time I remembered the KISS (Keep it Simple Stupid) principle, it seemed to work. Now, to find a quiet place to hold my pity party….. Because what goes up, simply must come down. 


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