As you can imagine, this whole process is emotionally, mentally and physically exhausting. While I will be the first person to express my gratitude that the Lord has allowed us to live in a country where our son is able to receive such comprehensive care, our clinic days can't help but be overwhelming. Some of these visits have lasted as long as 8 hours, intensively focusing on our son's permanent, severe inability to form a stable blood clot.
While I am left feeling much like I have run a day-long race, all uphill, there are still many lessons that the difficulties of clinic have taught me:
- Be prepared for the trip. When we head to clinic, the day will always go better if we have packed ahead for the visit. Besides usually needing our son's infusion bag with injectible drugs, alcohol swabs, syringes, butterfly needles and other supplies, we always have to make sure we have a copy of his infusion log, detailing his treatments. Snacks, video games, books and a fully charged cell phone are a must on these days along with a full tank of gas and some cash in my wallet.
- Let people know where you are. Life tends to take a screeching halt on the days we're at clinic. I can't get to the school to pick up my other children if they are sick. In fact, the girls might need a ride home from school depending upon what our check-in time is. I often arrange to have an emergency ride for my daughters waiting in the wings if need be. Other pressing matters will also have to wait. Concerns with work, my elderly mother or other pressing issues all take a back seat, but I'm courteous enough to let people know why. I graciously let them know, if you want an answer from me on clinic day, it will come later rather than sooner.
- Waiting can be a blessing. The amount of time waiting during clinic visits over the years could probably comprise at least one more day of vacation. Sitting there alone allows us to have mother/son conversations we wouldn't otherwise have. The individual relaxation of catching up on a book or playing a video game can be a welcome treat as well. And when the waiting gets to be too much, God is surely stretching our perseverance and patience for a more serious time when it is needed.
- Give yourself permission to collapse. I often joke with my husband that the minute my car leaves the hospital parking structure, my head starts throbbing. I can barely think straight. I certainly do not feel motivated to do any housework or make dinner that night. I learned long ago to stop beating myself up for pulling a pizza from the freezer or ordering carry-out for dinner on clinic day. I go to bed early that night without apologies.
- There is always someone who has it worse than me. Our clinic visits are at the MACC Fund Center for Cancer & Blood Disorders. While there have been times our son's hemophilia has neared the life-threatening phase, it certainly hasn't been the same as the children we see on the same floor battling cancer. It has always seemed especially unfair to me that children with Down Syndrome, already fighting a wicked battle, are more prone to a certain form of leukemia. As the old adage goes, few of us would trade our problems for another's. Although we sit in the admission area bearing the valid weight of our very real struggles, our problems seem to shrink with every precious child checking in at the desk who has lost their hair from cancer treatment.
- This disorder shapes us, but it doesn't define us. I always contend that the worst part of clinic day is that it's "all hemophilia, all the time." It's "in your face." Your complete focus for those hours of time are directed towards the fact that something is not quite right. Eyes are on the half-empty part of the glass rather than the half-full. There is a sudden sense of feeling that our family really does live with serious, life-altering difficulties. Thankfully, that's not how we live the majority of our lives. Yes, hemophilia definitely has shaped us. It has made us grateful for life's smaller miracles. It has taught us to praise God in the storms. We have developed a wicked sense of humor about something so dark. But we are not hemophilia. We are sons and daughters of the One True King. We have power in our weakness that our Father makes available to us. And on days like this, when we feel leveled, we are blessed to have the hope that we are more than conquerors because of Jesus Christ.
PRAY: Yahweh God, Maker of all, thank You for the medical support You grant us to care for our remarkable children. See us through every clinic visit. And help us to focus on the lessons You would have us learn from those all-to-frequent times we spend at the doctor's.