Saturday, February 11, 2012

Finding your battle hymn

So we are again doing doctor visits with a kid, this time Gray.  He has just been off the last few months, tired, neck pain, etc.  Initial blood work was good, no mono or thyroid issues, not anemic.  Next round will include Lyme's which is what our gut is saying, but the docs are talking of getting some imaging of his neck and head done too just so we rule out the scarier concerns associated with neck pain in a kids.

When you have a houseful of kids, health issues come up.  Haven's "stuff" is primarily gone except for the lingering ADD issues and the food allergy.  She has outgrown her epilepsy, her gastro issues are long gone and we are all comfortable with her food allergy and how to protect her.  It was not a fun ride while going through the diagnosis, but looking back we feel lucky that her issues were so minor and easy to deal with.

With Finn it was a bit different since he essentially spent three months not changing, not growing an inch, not gaining an ounce, not making one developmental movement.  Then when we saw genetics and we began testing, it was a long wait and the outcomes were pretty varied.  Now that we know what he has going on, and that there is little information but we believe it to be the milder form, we feel more in control.  Of course we took the proactive approach and got him into early intervention, and he has already phased out of physical therapy.  We see his cardiologist regularly to watch how his heart develops.  He has seen the ENT to determine if his throat is OK and if there is apnea and we will watch his lung development for any signs of emphysema.  There is little else we can do but be proactive, to be aware and to be ready for battle when it comes.  All parents of kids with "issues" do this, we just roll along with life because the "problem" disappears and just becomes our  reality.  I don't wake every day and see Finn's genetic condition, in fact, most days I don't even think about it unless we have therapy or an appointment with a doctor.  Sometimes kind people will comment on his big, soft cheeks and how cute they are and I am reminded that they are a symptom, but then I try to see what strangers see, a sweet baby boy with gorgeously kissable fat cheeks.

For me, the most helpful thing I did for myself when facing the unknown or the stress of a diagnosis was to come up with my battle hymn.  I found a song, for that child, that made me feel empowered as a mom, that made me feel like we could conquer the world and that I could project down the road at a future event, graduation or their wedding, and focus on the destination and not the path.  It helps, when I am scared or worried or generally sad about the situation to blast that song and sing it at the top of my lungs (even badly!) and feel that sense of power come over me.  We have it easy here.  My kids are healthy and will hopefully live long and joyous lives.  Finn's issues are still unknown, but we can handle what comes at us and when I doubt myself, my strength as a mama, my ability to get the job done, I pull out that battle hymn and know I am more powerful than I ever imagined.

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