Thursday, March 8, 2012

Someday I hope to be Fearless

I have to say, I am really bad at keeping this blog updated.  Of course, I'm the type of person that likes to block out anything bothering me and pretend I live in a perfect little world.  Then it builds up to where I HAVE to write it all out and I guess that's where this blog comes in. 

Things are actually going very well right now.  The most recent thing/event I had been "blocking out" (ie: ignoring, pretending wasn't really happening) was that ever since Mateo's surgery, last September, he had been going into junctional rhythm.  This means his heart wasn't beating in rhythm together and that his beats per minute were going dangerously low.  Its something his cardiologist wanted to keep an eye on.  Mateo had a 24 hour holter monitor sometime last November and his beats/minute were in the high 50s.  His cardiologist said that that was "doable" but if it went into the 40s while sleeping, we would need to in, talk about placing a pacemaker.  While this is not the worst thing in the world, it would have devastated me.  In my mind, having to intervene with ANYthing including a pacemaker, is the beginning of the end.  I was told that after the 3rd surgery, we would be on "the good side" and be able to just enjoy life.  That is not my experience.  At least after the 2nd surgery I knew what to expect and what was next.  We were waiting for him to get big enough for the 3rd surgery to be performed.  That's what was next.  Now, I feel like we've been tossed out to sea and we're just waiting for the other shoe to drop.   I am not naive enough to think that now that Mateo has had that "final" planned surgery that we're whole and fixed and will never have another issue.  I KNOW there will be issues ahead that will need to be addressed.  What is scary to me is that we don't know WHAT issue it will be.....serious or easily taken care of.  We don't know what course will need to be taken to correct that it surgery or something less invasive.  So, instead of enjoying life without a care, I sit, anxious and holding my breath...always waiting for that other shoe to drop.  So the junctional rhythm issue was a big deal to me.  And putting in a pacemaker meant his heart needed help...which I am afraid will only need more help in the future and resulting in a transplant eventually.  Of course, it may never come to that...but its where my mind goes and I fear.  It may be God's plan...and I'll have to be okay with that...but that doesn't mean I don't fear.  Because if more pain and torture for Mateo is God's plan, I can make peace with that but it doesn't take away the fear of having to see my child in that state.

But back to the present......see, this is what happens when my mind wanders to "that place".  Its hard to get out and I come across all the 'what ifs', back to the present......

Mateo's cardiologist wanted to monitor the junctional rhythm.  It wasn't anything that had to be taken care of NOW....but would eventually need to be addressed if it didn't fix itself.  She had a few ideas to see what was going on.  Sometimes, after major surgery like Mateo just had, the heart needs a little time to adjust to its new anatomy and will take awhile to get back to "normal".  Or, one of his meds might need to be adjusted or quit altogether.  We took our time with figuring it all out.  She gave Mateo's heart a couple more months to adjust itself and she did some blood work in the meantime and also adjusted a medication.  Mateo had another 24 hour holtor monitor (records heart rhythms for 24 hours) last February. 

Well, last week, at Mateo's heart appointment, we got great news.  He is no longer going into junctional rhythm.  Praise God!  Apparently, his little heart just needed some time to figure itself out and its now back to least whatever is normal for Mateo.  I was so happy, I cried.  I asked her to recheck everything too because I just could not believe it.  I had spent the last 5 months letting that fear eat up my energy by ignoring that fear in the back of my mind and now its gone.  I felt so renewed!  And on top of that, Mason also had an ECHO and EKG done and his little heart is perfectly normal and healthy.  I have to say, fear had my own heart in its clutches until I heard those words...."perfectly normal".  Seeing Mason with the EKG octopus all over his little chest was hard to watch.  I just did not want to go through all this with another child.  Mateo is worth it all and Mason would have been also, but its so very hard on a mother's heart and mind.  So it was the BEST. NEWS. EVER!

In other news, Mateo still loves school.  They have school/class pictures coming up.  The spring pageant is also in the near future.  I'm still enjoying being a mom of a school kid.  I love to take advantage of every opportunity to help out. 

Mateo also is enjoying being the Big Brother.  He loves and hugs on Mason all the time.  Mason cries and Mateo thinks he has to be there to hold his hand or rub his head, saying all the time, "Don't worry Mason.  Mateo's here.  Big Brother is here.  Don't cry.".  It really is the sweetest thing.  And he is a big help to me, running around bringing me diapers, wipes and burp cloths.

Mason is just over 2 months and is finally growing out of that "cry-all-the-time" stage.  He's beginning to be a lot of fun with all the smiles, coos and arm flailing he does.

We are looking forward to a fun summer with summer camps, Vacation Bible School, gymnastics, swimming and whatever else we can fit into our schedule.  We're even hoping to visit Meemaw and Papa in Wisconsin this summer. 

Mateo's doctor gave us a 4 month vacation from appointments, so we're praying that all stays well.  We look forward to making the best of our last year in Florida!