Today marks the 5th anniversary of the very worst phone call I ever received as a parent. It turned our world upside down. It is a very life altering experience finding out that your child most likely has a devastating diagnosis which is both progressive and fatal. I’m sharing a journal entry about it that I wrote last fall for Duchenne awareness.
Trying to find something besides advertisements while driving yesterday I starting listening to what I thought was WPR. A mom was talking about her 6 year old having a tantrum in the park in front of her friends and how she managed to walk away and get the kids and stroller packed up in the car and then just sitting there paralyzed by this absolute lowest point in her life as a mom. And that was it, the end of the program on what I found out was a Christian Radio station.
Okay, so I only heard the last few minutes so maybe I missed the point but I’m thinking seriously, if that is your low point of motherhood you need to start counting your blessings and perhaps attend a few motivational speeches instead of trying to give one. And really? The producers could not find a mother with a child who has autism, cancer, cerebral palsy, down syndrome or muscular dystrophy that needs to be dealt with 24/7/365 or anything worse than just a tantrum?
My worst mom moment is so bad I can tell you the date and time, where I was and exactly what I was doing. And get this, it was only two hours after my biggest mom accomplishment ever! As parents it was quite obvious to see that Ashton who was now 4 years and 7 months old was falling well behind children much younger than him. In trying to get him the medical services he needed we received the extreme of being told nothing was wrong multiple times to being the subjects of a child abuse investigation (yes, it gets worse than this)! Finally I found a doctor (yes, no referral I had to do my own hunt and search) who agreed that Ashton needed help and not only was she willing to order physical therapy but thought he would benefit from occupational and speech therapy as well.
By this time Ashton’s idiopathic toe walking was so severe that he most likely required surgery and she wanted to get started on the full work up including head and spine MRI, lab work, referral to Neurology and Genetics to try and find the cause. Of course I agree to everything and am so relived to have finally found a doctor who knows what to do and that Ashton will be getting some help. Nothing real serious was on the table and the possibility of orthopedic surgery isn’t the end of the world and I was kind of expecting that already anyways.
I was expecting to start getting phone calls during the next few days to get all these appointments set up. So when I my phone rang two hours later I was surprised that caller id showed that it was the medical group already. I asked my daughter to answer it for me while I washed the raw chicken off my hands. I take the phone only it was not Scheduling, it was the Doctor herself actually calling. Kind of strange, usually the Nurse or PA calls to relay information. Just a short call stating that Ashton’s lab work came back already and that his severely elevated CPK level of >24,000 indicated he had the muscle disease Duchenne, the only change to what we discussed earlier is that he would now be seeing a Neurologist through the MDA Clinic instead of as a regular patient so they would be calling as well. I say I’ve never heard of Duchenne and ask what exactly is muscle disease and what does this mean. I am told that Neurology could answer all my questions. I asked for the spelling so I could look Duchenne up.
So I put the pan of chicken in the oven and Google Duchenne. There is a moment of disbelief that I must have typed this illness incorrectly or the Doctor might have told me the wrong one. I take the notebook to my bedroom and call for Courtney to come by me. I ask her to please take the chicken out of the oven when the timer goes off, keep an eye on the kids for me and tell Dad to come by me as soon as he gets home. I was absolutely horrified! The description of Duchenne fit Ashton to a tee. The picture of a boy doing the Gowers Maneuver is exactly how Ashton has been getting up off the floor.
Having your child diagnosed with a permenant disability is not ideal or what you would hope for your child but it is not so bad either. Being diagnosed with an illness making your child permanently disabled with a progressive and fatal disease is overwhelming! So many questions racing through my head. How could something so serious be diagnosed with one simple blood count? How on earth did all the doctors that Ashton had seen before miss this? How could Ashton possibly have such a terrible illness when many times doctors assured me that he was just fine? And Duchenne is passed on by the mom, how did I not know I had this killer in my genes? What kind of future will Ashton have? What will this do to our family? How can I live without my son?
I was quite the mess by the time Ken got home. He had to oversee supper and put the kids to bed for me. I guess there really is no good way to tell a parent that their child has a terminal illness but having this dropped on you completely unexpected via a short phone call and internet search is really paralyzing. And then having to wait 8 weeks until you even get to see or talk to a Neurologist and have any questions answered is pure torture. Needless to say a tantrum, now that is a walk in the park! [DJW-09/18/2015]