Our Oliver experienced another short seizure today. My heart is breaking, my head is spinning...how can I support this little guy? I am thankful this one was under 1 minute and was pretty mild. Perhaps it is the heat? Maybe it is the fact that he fights naptime and has eliminated his nap altogether. I remember with my other two, I looked forward to "no more naps" because that meant longer outings, different play dates, and in many ways an untendered schedule. No naps and/or a lack of sleep for Oliver can result in seizures.
Life is complex with a child who has physical or mental effects from a medical diagnosis. For example, did you know that heat can be a trigger for seizures? I just learned this today. It is recommended your child take showers, not baths in case they have a seizure--yet you should have a shower seat and handlebar in case they have a seizure while in the shower? Everything-- EVERYTHING seems so much more complex. As his mother, I think and overthink his safety--because I have to.
In many ways, the older he gets the more challenging it is to parent him. Growth causes seizures. Brain development causes seizures. Weight gain can cause seizures. Skipping a meal can cause seizures. Most result in more blood draws to determine the level of medication in the bloodstream. It is heartbreaking to see my kid experience seizures. It is heartbreaking that he has to get "pokeys" (aka blood draws and shots) often. This is his normal. This is my normal. It is tough.
Along with his other medical diagnosis and sensory struggles, every moment of his waking day is "all hands on deck." It is explaining, reexplaining and reexplaining again what we are doing or where we are going. It is creatively talking him "down or out" of a raging fit because something did not go as expected, or was too loud, or something brushed again him in a "wrong" way.
Yet, in all of this, God is good. He provides resources, answers, support and wisdom. In the daily ins and outs it feels lonely and exhausting yet, I know Jesus walks with me. Thank you for reading my words, understanding a bit of our world and for giving me (and Oliver!) grace as we navigate the beautifully complex human God has created him to be.
My love- B
