Xavier Micheal Beeler
Our firstborn son.
The one we've always leaned on to be "strong," both physically and emotionally.
Xavier came along unexpectedly but was the best friend and best therapy we could have ever given his sister. He encouraged her to
want to run and play and drew her out of her shell into our world. He also reminded us that life can be fun.
Xavier is a remarkable big and little brother. He is giving and forgiving and he loves well and hard. He carries a lot of his mother's anxiety, which I hate for him. He worries about things and other people's feelings at the expense of his own well-being sometimes. This is what makes him both precious and vulnerable.
Months ago I noticed one of Xavier's feet turning in. He's always been a bit "pigeon-toed" but this was noticeably worse, sometimes turning almost completely horizontally.
I really wasn't worried, except that he said it hurt. Often. I made an appointment and took him to our family doctor, who is also an OMM, figuring he just needed things put into alignment. He had
stitches last winter and sometimes limping and overcompensating can put things out of whack, you know? We went to the appointment and I was expecting an adjustment and to be sent on our merry way. Dr. C. did adjust Xabe's hips, ankles, etc. and definitely noticed what I was indicating but couldn't get it corrected. He sent us to a pediatric orthopedic specialist.
Still, my alarm bells were not ringing. We headed to that appointment, me expecting probably some x-rays, maybe some physical therapy or a brace or something fixable. Mike didn't even come along, I was feeling so chill. Kea kept the other kids and my mom had come along for driving support, but I wasn't
worried. Until the orthopedist referred us to neurology. Flashbacks to recent things we'd gone through with Natalee, immediate concern, tears, all the whys. The orthopedist felt like something neurological might be affecting the nerves in the foot, causing it to pull up (high arch noted in the x-ray) and turn in.
We waited 6 weeks to get into the neurologist. At the appointment, again, they justified what I was seeing but couldn't give me any whys. He
can run, he
can straighten the foot if he concentrates, but "something" is there. Sigh. The neurologist diagnosed
dystonia and poor reflexes. The question was raised that "if this is as bad as it gets, then why not just leave it alone?" Agreed. However, I can't get past the question of "what's causing this?" especially since we already have a child under the care of a neurologist.
In May, Xavier had a spinal MRI done to check for
tethered cord. It was fast and easy and came back unremarkable.
Our next step in this journey is an
EMG. Our other option was to just stop. Do nothing, search no further. Every mom fiber of my being wants to take the latter route. Do nothing. However, years ago, when no one could actually tell us what was going on with Natalee, that's what we did. Nothing. We just stopped. We vowed to handle it on our own and shooed all the people away. And years later, when we needed help we felt like we were starting from scratch and I wished we hadn't stopped. That part of me says keeping putting one foot in front of another. That part of me says, do the test and see if Xavier needs help.
Over the weeks we've waited for this test I've almost called to cancel it on at least 3 separate occasions. I am tired and weak and worn out. Many days Xavier gets along fine, but on the days or evenings that he's limping, foot turned, in pain, then I think....sigh....let's just see. I called and talked to my dear friend who is also our nurse practitioner, and asked her to help me sort out my brain and she finally pointed out that if he continues in pain, or gets worse, I'll not be able to forgive myself if I don't see what this test says. She's right.
Some of the diagnosises that have been suggested are unfathomable to my brain. Those are what cause me to want to pull back and hide. But instead, we shall go forward bravely.
We don't ask for sympathy or for "I'm sorry" from you, our friends, just for prayers. At this point I don't know whether to ask you to pray that the test shows nothing or that it shows what we're looking for, because there is some security in at least having answers. Answers allow you to move forward with a plan. I like a plan.
Thank you to our friends and family who have been our sounding boards and listening ears through this new leg of the journey of the Beelers.
Xavier asked me if he could change our sign and chose this Scripture all on his own. I thought it was such a very good verse for this week.
Tomorrow we shall
go forward bravely, and while, yet again, I don't really know how we got to this place in our lives when things used to seem so
simple and easy, we thank you for your prayers.
