Almost two weeks ago, Daniel and I headed to Johns Hopkins Hospital with great hopes of finding miraculous answers and a medical diagnosis for him that no one here has been able to give us. Instead, of answers, we got a nasty, rainy night of waiting for our shuttle bus, lunch that was over an hour late because they delivered it to the wrong Holiday Inn and no definite diagnosis for him. But still, we choose to praise our Savior, Daniel does not have narcolepsy as suspected and as far as we know now whatever it is, is not terminal.He is wearing a 24 hour monitor now and has been been very diligent about recording his sleep patterns and activities.
Daniel has been quite the trouper in this twisted, turning, hitting the wall medical journey that is now going into its two year duration. He has never complained, whined or pulled the poor pitiful me card, He has continued to try to go to school, to participate in family activities and to be as “normal” as possible while he feels physically miserable. How can a mother not love a child like that? I love him so much that it physically pains me to watch him go through so much. Blood samples are as routine as going the the restroom for him now. Pouncing on slight moments of being awake enough to work on school work are miraculous moments now. Seeing him eat because he’s finally hungry and then want more has literally brought tears of joy. But still, we praise God…He is very good to us. God has covered us in protection, guided our steps along this meandering path and has held us tight to wipe away tears of pure frustration.
Do we feel sorry for ourselves? Do we question why? Do we become bitter when we watch other healthy teenagers around him that don’t have a clue what it’s like to to be ill for so long? Our answers to all are that negative thoughts have entered our minds, but we have not allowed them to stay there. We have scriptures throughout the house, at work and even in the car to remind us that our HOPE is in Jesus alone. Praying has become as natural as breathing in and out involuntarily. We CHOOSE to praise, even in our darkest moments of uncertainty. We CHOOSE to thank God for the precious moments when Daniel does feel like eating and when he hangs out with his sisters. And, that melt your heart grin of his….Lord, have mercy on the sweet woman that falls head over heels in love with him one day!
We have chosen to permanently park the emotional roller coaster in a deserted field somewhere where we can’t find it. Emotions only cause temporary ups and downs and I can’t deal with the lurching of my heart anymore. So, now, as we face another specialist next week, I choose to PRAISE, I choose to REST and I choose to TRUST.