It’s Been a Bad Day

It’s been a long emotional day and I’m totally exhausted.  I haven’t had one of these days in a long, long time.  I feel like I need to get my thoughts out before I collapse into bed, so buckle up!  If you’re looking for an upbeat post, stop reading.

Elena’s hip.  That blasted hip.  My poor little baby.

As I mentioned before, Elena will be having hip surgery later this year to correct her hip dislocation.  We are traveling to New Jersey to have the procedure done by the only doctor in the country who does this particular surgery.  It’s an alternative to a practically medieval surgery suggested by her local orthopedic doc that literally saws her entire femur in half and replaces it back in the socket.  Not an option for us.  The route we have chosen is much less invasive and has an amazing track record of no repeat surgeries.

The downside of this is that we are putting our trust in a doctor who has never seen nor touched Elena.  This entire process is based on trust.  We trust the other families at the Jackson Center who have put their children through this exact procedure.  We trust our gut that this is the right decision for Elena.  We trust this doctor who is cutting edge and incredibly knowledgeable about orthopedic issues in CP kids.  We trust God that He will provide peace and healing through the next few months.  We trust.

Last week, Elena’s doc had us get new x-rays since her last ones were from May.  I could tell myself just by seeing the image that her hip had gotten worse.  I didn’t know how much worse until the doctor emailed me this morning, practically panicked that Elena’s hip was nearing the point of no return.  Cue the hysterical Mom.  To make a long story (and day) short, we are likely moving her surgery up and will have to brace her in a horrible metal brace 24/7.  This is all in the hopes that we can avoid an additional procedure in the case that her hip is too far dislocated.

I could never try to explain to you the guilt that I feel, the weight of the decisions we have had to make for our daughter in just the short three years of her life.  Every day Chad and I strive to make the best choices for her, relying on her doctors, therapists and our family at the Jackson Center.  Some are small, like should we start Elena in a new PT program.  Some are huge, like should we pursue a hardcore medication like Baclofen to help Elena’s tone (one we struggled with for 2.5 years).  We make a decision and pray for the best.  When our expectations fall short, it can be soul shaking.  That was today.

I know there’s nothing I could have done differently and that her hip digression isn’t in any way my fault, but that doesn’t change the fact that I’m choosing to put my sweet little baby through a painful surgery and recovery that she won’t understand.  Even though it is the right thing, it doesn’t make the gut wrenching decision any easier.

Days like this make everything else trivial.  That thing I was complaining about last night.  Those new fall boots I’ve had my eyes on.  That family vacation we had planned.  That project that needs finishing at the house.  I would give it all, every last bit of everything I had, to have my baby be whole again.  Days like this, I regain my perspective.

I’m so incredibly grateful for Chad today, with his quiet understanding and support.  He’s the only other person in the world who understands this burden that I bear.  He knows why this is so frightening, so emotional.  The support I received this afternoon at the Jackson Center was a Godsend.  These moms understand the difficulty in having to make these decisions for your children.  And for Lara, who has been in my shoes with Jackson and is leading the charge for Elena.  She took the time to calm me down, explain things, and assure me.  Just what I needed.

As always, I’m confident we will conquer this battle.  It’s just the getting there that is the hard part.  And as usual, we’ll need to be surrounded by your prayers to get there.  We never get through these tough times without your prayers and support.  Today, it took a small army to get me through so I’m sure it’ll take more than that to get us through the next couple months.

For now just pray that her hip doesn’t deteriorate any further and that she would be tolerant of the sure-to-be miserable bracing she will have to endure.  And for strength and peace.  I’m sure in days ahead there will be a struggle to find either.  We’ll keep you posted.

Elena rocking her hilarious new neck brace (to help with her head control).  I mean this girl even looks adorable with this ridiculous thing on!