God's Grace is Sufficient

It started out like any other day for our family. Waking up and going through the morning medical procedures and getting the boys to take their over twenty pills along with other medications mixed into "something". The "something" changes daily. We were busy with school work when the phone rang. My friend had forgotten to tell me she had rescheduled the interview from the previous week to this particular morning. "Can you make it to Starbucks for the interview?" she asked. "Sure, the boys just have to put on their shoes and we will be there. No pictures of me, though, because I'm in sweatpants and a t-shirt!" I replied.

Our church is hosting a blood drive next month and a local reporter wanted to interview people who use blood products. Of course, my boys popped into my friends mind when the reported said he would like to interview people who use blood products. My first thought was that cute kids might get more people to donate blood! This article is not about the blood drive, however. It is about my youngest son and his response to one of the reporter's questions.

We all got something to drink and sat down. The reporter talked briefly and asked a few questions. Then he looked at Joseph and asked, "So, tell me how having Shwachman-Diamond Syndrome affects your life." Joseph replied, "It doesn't. Well, I mean, other than going to the hospital a lot." We all laughed and I said to the reporter, "Well, I sure don't know how it doesn't affect his life, because it sure affects mine!" My friend said something about it being a testimony to me as a mother. I cannot say that it is a testimony to me, my husband, per say. Yes, we played a role, no doubt, but I like to tell folks that it really is ALL God. I believe that we do our best as parents and God fills in where we are lacking. I digress, because this is not the topic of this article. What is the topic, you ask? Something in between.

His response took my breath away and brought tears to my eyes. His response brought joy to my heart, too. His life is not defined by Shwachman-Diamond Syndrome! I know it affects his life just as much as having Mitochondrial disease affects his life. When I made the joke to the reporter about it affecting my life, Joseph looked at me and said as he laughed, "Well, let him ask me about how Mitochondrial disease affects my life, then I could tell him a lot!" He could laugh and joke about these things. How could it be that in that one moment, he could reply, "It doesn't"? I thought about this the rest of the day. My mantra has always been, "They are not defined by Shwachman-Diamond Syndrome" or "Shwachman-Diamond Syndrome does not define their lives." In the last year, I have added Mitochondrial disease to that mantra.

Yes, having Shwachman-Diamond Syndrome affects his life, but overall, it does not change his life. He can still be a kid with a bit of work to overcome obstacles he faces each day. Is life difficult for him at time? Oh, yes! We have worked hard to ensure that he can participate in "normal" childhood activities. We have had our battles with all of our children, healthy guy included. If you've read my previous articles, you know some of our battles. It is difficult to raise children - all children. It is very difficult to raise kids with illnesses and help them grow into adults that don't define themselves in terms of the diseases they battle. I do not propose to know the answers or any special tricks. It has been and continues to be a daily battle of wills, a battle that requires fortitude. I believe that God gave me a special gift on this day. The gift? Hearing the words come out of his mouth and knowing that he is okay with his life, with the diseases he battles.

As parents, we all worry and try to protect our children from harm. We want them to be happy, healthy and grow into productive adults. When illness enters the picture, we doubt, we question and we worry about what the future will bring for our children. I do not know what tomorrow will bring, but today, I think it is going to be okay. God allowed me to see that the human spirit is strong and capable with His grace. That is the only explanation I can give as to how a child who has been under anesthesia over twenty-five times, gone back into the hospital with infections after surgeries, been hospitalized with serious infections, had numerous other procedures, logged more hours in a hospital than I can count, takes over forty pills a day, gets a blood product (IgG) infused every week and who performs a minor medical procedure every four hours each day could answer the reporter's question with, "It doesn't." God's grace is sufficient.

Side note: Luckily, I brought my camera (I'm an avid blogger and am trying to "advertise" the blood drive). I have great pictures to use for a scrapbook page that can be used in the future, if he is ever feeling down!