05 Sep The truth
I have tried and tried to start this post, to restart this blog actually, a million times now. Quite literally, I’m afraid, over the course of the last few months. It is easy enough to update when Keegan is in the hospital or when we have concrete answers. Unfortunately, those answers are hard to come by. They always have been with Keegan and still are, even though we are getting closer to them. I dread answering the question, “how is Keegan doing?” It seems impossible to answer at times. I dread almost as much when someone asks how I am doing. That also seems somewhat out of my grasp these days. So, I usually answer “oh, ok” in person and have been avoiding any attempt to answer them on the blog just as much.
Instead of avoiding everything, I think it’s time to start over. The first and foremost goal of this blog was always to be a chronicle of Keegan’s medical history. Even if no one ever read it or understood some (or even most) of what I wrote, we wanted to have an accurate recounting of Keegan’s medical issues. It kept our family and friends apprised of Keegan’s condition from the very beginning, as Gray actually started the first version when Keegan was but a few hours old. It has helped us prepare to take him to Boston and to Cincinnati and to refresh our memories from trying times when doctors asked us for detailed information about his history. It allowed those near and far to bless us with the power of prayer on Keegan’s behalf for the last nearly five years, and in rarer circumstances, it helped connect us to other families on a similar road. Here and there, I felt the need to share my personal feelings and insights from this life also. Partly because I felt it may help other heart/transplant/medically-complicated families, partly because it helped me process the complexity of the situation, and partly because at times I desperately feel the need to explain to others what this journey is like. Whether that be challenging, rewarding, crushing, enlightening, or simply tiring.
However somewhere along the way, I started to feel the pressure of the “blog world” creep in to my “medical journal”. This pressure that extends from blogs to Facebook and beyond. To portray a perfect life, a perfect family, a perfect home, perfect crafts, perfect food, etc, etc, etc. Shiny, happy people everywhere you look. Keegan’s health and developmental state often keep us from doing many normal activities, even simple crafts at home. We don’t have a spare dime to spend on making improvements to our house or taking trips, and I am certainly the furthest thing from a gourmet cook. On the flip side, I didn’t want to be another family with medical/special needs that lives nothing but that world, all the time. Nor do I have any deep philosophical truths to share. I’m honestly not sure my brain is capable of even shallow truths these days. I suppose I felt at some point that if I didn’t have something well-written with flawless photos that was (a) perfect, (b) creative, (c) brilliant, or even (d) mildly comprehensible to share, I might as well not share anything at all.
Remembering that this blog was not to serve my own purposes but Keegan’s is the main reason I am recommitting myself to updating. It is a disservice to him, both medically and for his own knowledge, if I fail. Keegan deserves to have this information about his medical battles in order to understand where he has come from and to make future decisions about his care.
If I am to be brutally honest with myself and any reader who happens here though, I do have the selfish reason of writing as therapy. Congratulations, you are now my new therapist! God and everyone else knows I don’t have the money for the real stuff. As I felt that perfection pressure increasing, so did my inability to cope constructively with just about every aspect of my life. I am pretty good at soldiering on and keeping a straight face. It served me extremely well once upon a time in a courtroom. (Remember that little piece of history where I was a somewhat successful trial lawyer? Yeah, neither do I.) The truth is that behind the facade was the crushing feeling that I was failing at absolutely everything. Failing at taking care of Keegan and making sure that I was giving him every possible advantage. Failing at making a home, at being a wife, at being a mom, at meeting Audrey’s very distinct needs compared to her brother’s. Failing because I was not earning a living to contribute to our financial situation, failing to repay the debt of a law degree that I worked so hard to receive. I dreaded getting on the internet and seeing others tell of successes that seemed so far away to me. And then, well geez, I was even failing at keeping up the blog! The endless cycle just kept going.
I wanted to break free of it, but I felt bound by the looming uncertainty of Keegan’s remaining genetic labs that we were due back last week. How could I commit to changes if with one test we could be thrown into seeking treatment for a new diagnosis or starting a new round of drugs that would change everything. If the tests confirmed a form of Severe Combined Immunodeficiency Disorder (SCID), we would be pursing the possibility of a form of bone marrow transplant. If they did not, we were hoping that the research labs being performed by the rheumatology group would give us guidance for a stronger immunosuppressant that would help us wean Keegan’s steroids and prevent flares, but also make him even more at risk for infection. How do you pull yourself by the ol’ bootstraps if you don’t know what tomorrow is going to bring?
Unfortunately, we learned last week that the lab in Canada that was supposedly working on the genetics never received the blood we sent in June. 12 weeks of waiting utterly down the drain. I refuse to go into details here. Suffice it to say that policy at Children’s has been changed so that this mistake will not happen again to another family. If Keegan stays stable for the next 10 weeks or even stays able to fight flares as successfully as he has recently, the only harm caused by the lab error will be more anxiety from the wait. We decided to cautiously tackle a painstakingly slow steroid wean so that the remaining wait is not a complete loss. One milligram per month, starting last Thursday. Currently, Keegan is back to what we have come to call his baseline. I hesitate to call it stable, as the slightest upset can capsize the whole boat, but right now, there is nothing going on that we can’t handle at home. Some days are worse than others. This weekend was a rollercoaster ride; Keegan was extremely tired and had a 36 hour rise in his heart rate and blood pressure. Not good signs for him, but he ultimately came back to more comfortable numbers by last night. He is powering through his therapy sessions and making small gains each week. He is developmentally very similar to Audrey and started showing some classic two-year-old behaviors that are very encouraging.
The truth though is that the anxiety of the unknown and the grief of an unrealized dream for my family robbed me of joy. I admit and acknowledge that, and I am confessing it here in order to keep myself accountable in the future. It is not the first time in the last few years that I have succumbed to this worry and fear. It just seemed more acute this time. It felt as if there was more on the line with Audrey added to our family and being on the cusp of a five-year quest for answers for Keegan. The truth is that anxiety stems from a need for control. (A constant source of issues for me since childhood.) But I was never in control in the first place. This life and purpose belongs to God and no other. If I know that I have placed my trust in Him, if I truly believe that He will make these struggles glorified, then my anxiety is a waste of energy that could be put elsewhere.
People often quote the adage “God will not give you anything you can’t handle.” Any person who has been told that as a means of comfort knows how it can stab at your heart. But the missing ending of that phrase is that He will not give you anything you can’t handle if you place your trust in Him. He doesn’t expect me, nor want me, to shoulder this burden on my own. That is the truth. One I am putting great effort into remembering daily and am renewing a desire to seek daily. If you stuck with me through this post, I can’t thank you enough. Heck, if you stuck with me through the last few months, I really owe you. I hope that I can live up to my promise and desire to post here more regularly. For Keegan’s sake and mine.
And that is definitely the truth.