Holy Saturday

We're preparing for the wonderful Easter celebration that begins at vigil Mass tonight.  Hubby has the oldest out buying a pair of dress shoes for Easter.  Their feet grow too fast!  I'm busy boiling eggs, because even with the boys being older, a few of them still want to color Easter eggs. 

We have lamb every Easter that we are able.  Yum.  I roast garlic in the oven and then mash it with fresh herbs.  Coat the lamb with this and let it sit in the fridge overnight.  It makes the best lamb ever!  It really is simple to do.  Simply put whole heads of garlic in a crock, drizzle with olive oil, cover and bake.  Once it cools, I remove the cloves and mash them into the oil.  Crush fresh rosemary and oregano with a mortar and pestle, add to the mix with a bit more garlic.  Massage into the leg of lamb and let it sit overnight in the fridge (covered, of course). 

We are also preparing our lamb shaped cake.  One of my favorite cake pans! If you click on the "Easter Activities " label, you'll see where you can get the lamb shaped pan and also see some of our naturally dyed Easter Eggs from years past.  We love to do neat things with our eggs,  This  year will be simple, though.

This Lenten season was very dry for me.  I suspect it is because of many reasons.  In the fall, we lost another unborn little one.  Our 17th.  Seeing the heartbeat and then having to be in the hospital just brought back so many memories of the many other losses.  That coupled with getting the muscle biopsy results back just as Lent began, made it difficult to concentrate on Lent.  Try as I might, this was just a difficult Lent to get through!  We've had many Lenten seasons where we've gotten abnormal results, bad medical news, etc, but this one was just different.  I think I hit a wall.  My brain was already too full before we got this added diagnosis of Mitochondrial disease.  I have no more compartments left!  Trying to focus on Lent was exceedingly difficult as I waded through medical literature, learned about the new supplements and we worked on getting the boys to take the new "fish pills" as we call them.  We tried the cherry flavored liquid version, which they hated even more!  I am happy to report they are now taking the pills without a problem.  Just an occasional scream from us to hurry up because the smell is taking over the kitchen! Even when we feel completely overwhelmed, God is with us.  This Lent, I had to remind myself that Jesus felt every emotion we would ever feel and He knows our hearts.  I may feel as if this Lenten season was not very productive for me, but I know He was still at work-- even when I don't see or "feel" it.

I realize we are completely and utterly blessed.  The boys started some of hte Mito cocktail back in November after the muscle biopsy.  After the results confirmed Mitochondrial disease, we started the prescription supplement called Levocarnitine.  We have seen some positive results after being on the supplements for just over 4 months now.  There is no cure for Mito.  The only treatment available is high doses of vitamins and supplements.  The FDA recently approved the first Mito drug, but it hasn't been studied in many Mito patients (my understanding here), but it does look promising.

J's swallowing has gotten better and we have noticed in the last few weeks he is less clumsy.  He isn't tripping going UP the stairs or coming down.  He still has some choking and aspirations, but not at every meal like he was before the Mito Cocktail.  We are very thankful for these improvements.  We have several things we wish for.  One is that the government would allow us to deduct the cost of the supplements from our taxes.  There is a bill in Congress to allow this.  My beef is that we shouldn;t need Congress to tell us we can deduct it from our taxes!  A doctor has prescribed these supplements and has checeked their blood levels and increased their dosages, etc.  If a doctor prescribes it, we should be able to deduct it. 

I'm back to preparing for Easter.  I hope that you are all having a blessed Holy Saturday as you prepare for Easter Sunday.  Something that I did reflect upon yesterday was that with every Good Friday in our lives, we always have an Easter Sunday.