Freedom and Guilt

Who would have thought Freedom had anything to do with Guilt?  Any mother, daughter or wife of a soldier killed defending our country could probably answer that.  And while I will never compare the struggles our family faces to those families who have lost their loved ones (and we know a few personally), I have discovered that perhaps all of Motherhood is about guilt and second-guessing, and ultimately protecting the life you’ve been charged with raising and then letting go.  And that, we just may have in common.

We haven’t so much as taken Struthers in a grocery store yet.  And it’s not about being a germa-phobe or overprotective first-time mom.  It’s because EVERY time we have taken him to a public place, even with proper precautions, he gets sick.  And we’re not talking a little cold sick.   The clinginess is first–he won’t let me take a step in the direction of another room.  Then the sleep–12-14 hours at night, then another 4+ during the day, but none of it is restful.  Then the congestion–out comes his (ok, our) least favorite thing in the world, the suction.  Then we hear the wheeze and watch his o2 saturations drop, his shoulders heave and his chest pull in–out come the Ipatroprium Bromide, Budesonide and Albuterol nebulizers around the clock.  Then the prednisone loading dose on top of the 3 other maintenance steroids and the subsequent ‘roid rage.  Inevitably, he doesn’t eat well either, so high-calorie formula and fluids through the G-tube we didn’t think we needed. This is at least a once-a-month occurance, even considering we don’t take him anywhere and are pretty much hermits. No freedom, and yet we have so much!

But at a certain point, you just need that freedom to go where you want when you want.  And you so desperately NEED to take your child with you and learn how to cart them in and out of places and take adventures somewhere other than the Dr’s office.  I need it and he needs it, right?  Besides, if he gets sick, it’s much more likely to have come from the hospital last week, right?  So went my logic as I woke up on a beautiful Saturday morning last week with a good dose of cabin fever.  So we played outside all morning while I took assessment of what plants I wanted for pots on the porch.  And we went…we went to Home Depot, and I even let Struthers drive the ‘cart’ (after it was fully sanitized of course).  We went to Focus on the Family for me to grab a book I’ve wanted forever…and it was Family Day, complete with a 4H petting zoo I couldn’t shuttle him past without stopping to pet the goat who looked just like his Little People one!  So we embraced the fun and normalcy of it all, and I was thankful the other vendors and booths at Family Day were closed and few people were left when we arrived @3.  Until Monday.

Monday brought the clingy-fussy’s and slight congestion.  Guilt pang because I knew what was coming.  Then Tuesday brought the sleeping extremely late and the fever.  Wait, fever?  Over 3 days, our sweet boy’s temperature reached 104.  And it was alleviated by Tylenol, but only until about an hour before the next dose was due.  Now, while Struthers’ situation is a bit different and we must be cautious, I’m constantly wary of the fact that I am a new first-time mom and I have to keep in mind that every new mom goes through such questions when their kid is sick.  I also know how harmful running to the doctor’s office can be–he doesn’t need to be fighting 2 bugs, viruses or colds.  So our pediatrician and pulmonologist are on speed-dial, and they are so responsive and pro-active with Struthers because they’ve seen him take turns for the worse way too quickly.  Given that we had the crazy idea to ring in the summer with a week away in Mexico coming up (per the aforementioned one planned trip we decided not to cancel after the pulmonologist suggested minimizing), they needed to assess what was going on.  So twice this week, we found ourselves in the pediatrician’s office, each time shuttled back to a room without waiting in the namesake room.  After blood cultures and 2-full workups (again, guilt for the pokes), we were encouraged to keep our travel plans, which had its own accompanying guilt and second-guessing.  Were we putting our needs to get away above our son’s needs?  But we left the pediatrician’s office with knowledge that this appeared to be yet another virus, not yet pneumonia and not bacterial.  And Goodness knows we know what we have to do to ride out viruses, and we have all the tools to manage keeping it out of his lungs.  Just add to the packing list an antibiotic in case, enough prednisone to initiate another round (even though we aren’t yet done weaning from the previous round), and the handful of pediatric masks from the pediatrician for the airport/plane ride.  And the realization that a) sea level will be good for him IF b)we can prevent him from getting sicker, and c) we could either be providing this round-the-clock care we are fully prepared and capable of at home, or we could do it at the beach.  But all of it that too-familiar guilt and questioning whether this was the right call.

So this Memorial Day, we are writing you from a beach in Mexico.  And I have to say, it is a great change of pace.  We have only made it down to the pool twice  (for a total of an hour) in the 2 full days we’ve been here, but it’s still been a much needed vacation thus far.  And Struthers seems to be better (he was by Friday, or I’m sure we wouldn’t have left).

However, it seems that even at sea level, he is in need of his oxygen badly.  This was apparent twice–once when we didn’t realize he was ‘unplugged’ but we noted how tired and sleepy he got so very quickly as we were getting ready to go down to the beach.  Then we realized he was unplugged (10 minutes at most), plugged him back in, and he perked up within minutes.  Talk about GUILT!  The second time was today, when he was doing so well, saturation at 100% and freshly napped.  So I decided to see what he would do off the oxygen for a bit.  Note that this is something our pulmonologist even encouraged, and I wouldn’t do it if I thought it was a threat at all.  Let’s just say that I no longer have to wonder if he would be off oxygen by now if we lived at sea level.  The answer is a resounding and undoubted no, with the first 17 minutes above 90% but steadily dropping to 79% (!) by 21 minutes.  Enter guilt again, but not totally surprising.  I’ve always said the boy knows what he has to do and holds his own for a long time…until he can’t anymore.  So I will not be trying him short periods off O2 even at sea level.

We will post photos from the week to the Photo Album page, and try to caption them, but I don’t plan to be on the computer much this week 🙂  Instead, I’d like to just embrace trying to keep something normal about a family vacation, and celebrate the freedoms we do have with our son, even if we are tethered by oxygen and medical equipment.

Today, especially, as we tangled ourselves in oxygen tubing in the pool and nearly removed a g-tube, the focus is on the freedoms.  I can only hope to have the courage of so many other moms who have sent forth their sons to defend the very freedoms I take for granted.  I want Struthers’ Dad, uncles, great-uncle, cousins and great-grandfather to teach him the true costs of freedom.  God bless the USA, its soldiers past and present, and the families who support them as they defend our Freedoms.