Sharing Hope ... Finding Joy

Waiting is hard. Especially when you’re waiting on health answers about your child. Jesus was with us in our waiting. Wait for the Lord; be strong and take heart and wait for the Lord. Psalm 27:14 We got Lyndsey’s CT results the last week of August, 2018: she has had a stroke at some point in her life. We were referred to a neurologist for further help with her headaches and to learn more about the stroke. That appointment was one month later on September 25 th , 2018. In the meantime, I had Lyndsey start keeping a diary of her headaches so we would have information to give the neurologist. I printed out a Pain Scale for her with numbers 1 to 10 and descriptions to help her communicate the level of pain. Whenever she had a headache, she would write down the date, time, pain level, where on her head it hurt, the barometric air pressure, if she had something hormonally going on, and even what she had eaten or if she had an empty stomach. She also kept track of what medicine...

As the Mom of a special needs adult child, it is up to me (and her Dad - but mostly me) to manage her health, remember her medical history, and decide what symptoms need to be checked out by a Dr. and which ones are minor enough to wait them out. This is a HuGe responsibility. The responsibility is also huge with children, whether special needs or typically developing. There are many things to consider: 1) her inability to communicate what she is feeling and the severity of it; 2) I don’t want to raise a ‘whiner’ who cannot deal with the everyday aches and pains of being alive; 3) I don’t like her being given a pill every time she goes to the doctor; and 4) doctor visits, medicine, and diagnostic tests are expensive!   Then there is the 5) Guilt of making the wrong decision; of not acting or not acting soon enough. Every parent can relate to this and understand our position, emotions, and anxiety as we navigated Lyndsey’s diagnosis. Here is her story: In June, 2017, Lyndsey h...

This summary is from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/moyamoya-disease/symptoms-causes/syc-20355586 Moyamoya disease is a rare, progressive blood vessel (vascular) disorder in which the carotid artery in the skull becomes blocked or narrowed, reducing blood flow to your brain. Tiny blood vessels then open up at the base of the brain in an attempt to supply the brain with blood. The word "moyamoya" means "puff of smoke" in Japanese, a term describing the appearance of this cluster of tiny blood vessels. These tiny clusters of blood vessels cannot supply the necessary blood and oxygen to the brain, resulting in temporary or permanent brain injury. The condition may cause a ministroke (transient ischemic attack, or TIA), stroke, bulge or ballooning in a blood vessel (aneurysm) or bleeding in the brain. It can also affect how well your brain functions and cause cognitive and developmental delays or disability. Moyamoya disease...