The things they don't teach you in school

I've been battling frustration lately, which makes me FRUSTRATED!

 This emotion really is an evil. 

I pondered over writing this blog, but then it just frustrated me constantly thinking about it so I decided to just let my fingers be the outlet.

I don't like to complain, I don't really even like to vent about being frustrated, but I'm only being real.  So hear goes, you've been warned.

Looking back on my formidable years, I'm quit disappointed that I wasn't more prepared for life.  I mean REAL LIFE.  School, as well as parents (sorry mom and dad if this comes across wrong I LOVE YOU!) are the root of who you become as an adult.  So often you hear people talk about rotten kids and how bad their parents must be.  I don't believe this is 100% true, but maybe 80%.  School and parents are a big part of our development.  DUH!  So I'm frustrated as to why I wasn't more prepared for this huge curve ball called Sanfilippo.  When I was picking my class schedule in HS, there wasn't an option for School of Hard Knocks 101 or Insurance appeals 200.  No one is taught how to deal with terminal illness' of their children or what to do when you need a sleep safe bed or where to buy bigger diapers or getting a safe room put in their homes because your child's safety is ALWAYS a worry.  (sorry Mrs. Rosen for the terrible run-on sentence!)  No one teaches you how to manage all these frustrations without feeling frustrated.

So it's left up to you......to me.....to figure it out and make the most of it.

My biggest heart ache right now is feeling like Livia is slipping away from me.  She's still so happy and well-behaved, but little things are starting to show.  She's wandering more, climbing more, she's chewing different, she seems to get over stimulated more often, she can't process this stimulation and is getting agitated.  I know my frustration is not coming from the busyness, it's coming from the fact that MPS is changing my little girl and I'm scared.  I feel like I do a really good job at hiding my heart ache.  I hide the fact that I'm scared and worried almost daily.  Even though those emotions exist, I have to hide them in order to function.  I'm not going to complain and look like I can't or don't want to handle this.  I wouldn't trade Livia for anything.  I'd trade the MPS, but unfortunately, this comes with Liv. 

If I can't get an easy button, can I at least rent one for a day?

It's been a hard 6 months for us.  A lot of change with Livia, financial worry and other family medical "stuff."  I keep telling myself, "this is just a season, it will get better."  I pray about it ALL THE TIME.  I've had frustrations with God, which FRUSTRATES me.  But I know He wants to hear it all.  Good and bad.

Finley is in such an awesome stage of her life.  She really is a great kid.  She's smart, funny and has a great imagination.  I wish I could bottle her up where she is right now and keep her there.  I mean, she loves me and thinks I'm the greatest.  It's been on my mind a lot that Finley is going to face a lot of heart ache in her young life.  I do believe that having a special needs sister is going to give her strength and compassion.  She's also going to have to grow up faster than most of her peers.  This does make me sad and nervous for her future.  Yeah, I know, you can't control your kids future....I KNOW.  But when you have my situation, you can't help but think about these things.  Sometimes I have the visual that my arms are ropes, Liv has one side and Finley has the other.  The side Livia has, often wins.  She takes constant care.  It's frustrating because I do feel like I'm missing out with Finley at times.  However, I have her.  I'm so thankful that I get to experience Finley and raise her as my child.

“To conquer frustration, one must remain intensely focused on the outcome, not the obstacles.”
― T.F. Hodge

My desired outcome; Heaven.  Enough said.
  

 

The minutes matter

The week of May 21st was a turning point week for me.  Yes, it's July 4th and I'm blogging about May.  This blog has been on my mind since that week, but I haven't been able to shape it until now.  That week was a turning point in my life with Livia.  I'm curious how many turning points one can have in a life time.  I'm thinking I will have many.  Anyway, this week was our third visit to the University of Mn for the Natural History Study.  I prepared for this trip like the two before.  Itinerary's prepared, luggage packed, a little fun planned and my mom in tow this time.  The only difference this time were some questions that I knew I needed to ask, but had been avoiding during the past visits.  This time I had to buck up and face the music.  I didn't know if I'd have another chance.  I mentally had to prepare myself because in my heart I knew what I was going to hear, and it was going to be hard to hear it out loud.  Getting to MN, we spent the first day at the Mall of America.  Once again, Livia LOVED the rides.  I wish I could bottle up her excitement and giggles and share it with everyone I come into contact with.  Pure joy!  The next day, Tuesday, was the meeting with Dr. Whitley that I had been preparing for.  I would love to go into complete detail about this meeting, but I think I would lose most of you reading this, and I really don't want to do that.  So, in short, I asked the difficult questions and indeed received the difficult answers.  I had prepared myself, but the tears ran anyway.  This turning point of days changed my outlook once again with Livia, a cure, and what really matters.  Before I go on, I want to express that in no way has my hope for my child decreased, it's only changed a bit.  I've learned a new way of LIVing, once again.  The anniversary of Livia's diagnosis is two days away.  I look back on these three years and I can't believe how much I've learned about myself, my kids and my family.  And now, with ONE more turning point day, another change has occurred.  It's now that the minutes matter.  This may seem obscure, but not to me.  Every single moment is an opportunity for a memory, a quiet hug, to hear a laugh or a word, to see her running and playing.  I'm not going to let any of these pass me by.  I'm in a new state of awareness, 24/7 and I'm not going to miss a thing.  I'm sharing this with you because it's really a great state to be in.  Having this frame of mind means; less stress, more fun and creating quality moments that really really matter.  The chaos of our life, to me, is perfect.  

As I sit in this quiet cabin on 2400 E, the familiar 4th of July visit is upon us.  This visit always sparks emotions in me both pleasant and not.  It's become an annual tradition that Jake and I pack up the girls and dogs and come "home."  This time of year is so much fun with all the events going on, but it stirs up the time that the pit in my stomach took up permanent residence.  Being around family and friends with our girls is so important to us.  We want our family to have the opportunity to create memories and have that quality time.  We need to do life together.  We also need to put the little stresses aside so that those moments don't pass us by.  Enjoy the minutes and fill your days with love and fun.  Happy 4th of July and may you be blessed and be able to recognize your blessings!