Today was another “hospital” day. Days when I leave the house by 6am and arrive for multiple clinics, labs, and x-rays. Days when I must wake baby from his slumber for a long 2 hour drive. Days when I am forced to face the reality of our situation. Baby is sick. Or if we say it like his medical staff says it, “Your son is a very sick little boy.” What do you even say to people who say things like that?
At home I can forget how sick he is. I forget that beeping machines, special formulas, medications, and cough assist machines aren’t just a normal way to live. I can forget that being adorable and happy doesn’t cure Duchennes. I can forget how big he should be, how he should be talking, and what he should be doing. Is it important for me to remember each day? For me, no. I’m not sure that it’s important or even healthy for me to remember day in and day out. I couldn’t bear that. It would cause me to concern myself about tomorrows that may never even come. I’m sure other mothers of terminally ill children have the same feelings. There are days when we must face the reality of our situation, but for the rest of the time we’re just busy living.
Today was a hospital day though. . .a day when reality is visually and verbally put before me. Days when I hear the word Duchennes more than I care to hear it. It seems like with each visit we’re given another diagnosis to put in our chart. Today, we were told that it was confirmed that baby does in fact have Rickets and Osteopenia, causing him to have “glass bones”. Baby’s liver is not functioning correctly causing his Vit. D to not be absorbed. Today, I was shown the X-rays from our last visit and the stress lines in each of his major bones (stress lines that can easily cause a fracture), I was asked to feel the lumps on his ribs, and exam the mis-shape of his forehead. I was told exactly what is happening, what they project to happen, and what their plan of action is to help. I asked 1001 questions and was given 1001 answers by a patient doctor who is a great part of our medical team for Daniel. It was just another one of our Hospital Days.
As always with “Hospital Days” we had lab work that includes rolling veins and lots of tears. Long drives home as I process all I heard and at times tears that can safely be expressed in the quiet of the 2 hour car ride home. There are several verses that have taken on a whole new importance to me. Verses such as 2 Cor 10:15 “take captive every thought to make it obedient to Christ” are critical for me to keep evaluating my thoughts and make sure they line up with the mind of Christ. However, today wasn’t a day of tears. It was more a day of realization that except for Hospital Days I don’t face the reality of our situation very often and you know what? I’m thankful for that! I’m thankful that the Lord has helped me learn how to make our life “normal”, to be filled with living, loving, and relishing each moment! I’m very thankful for that! I guess we have to have the hospital days, but I sure am thankful they are not every day.
Until our next hospital day I’m living in our own “normal” and enjoying every single moment of it!
With much love,
Mrs. Joseph Wood