Thursday, June 30, 2016

To Say There's A Lot Going On.....

You're going to hear me describe life as a blur, a whirlwind, straight chaos for the next few months.  So, my apologies.

The last three weeks have been just that.  In a matter of several days, we learned Elena needed surgery, scheduled surgery and ran all pre-op testing and approvals through.  Chad and I even managed to slip away to California for a few days, just a little calm before the storm.  But, it literally feels like I went to sleep on June 1st and woke up today, June 30th.  Something tells me I'll do the same tonight, and wake up July 31st.

First things first, Elena is doing great.  Which killllllllllllls us.  Like I think she's the happiest, silliest she's ever been.  She's doing awesome in all her therapies.  Her walking has been outstanding.  She's making new sounds, which impress us all, even her!  She's been eating (remember when I say eating, I mean just tastes of food) really well.  And, she's just so darn content, waking up squealing and going to bed squealing.  To know what lies ahead in the next week for her makes all of this, just heartbreaking.

I cry because she doesn't know what's coming.  I cry because all this progress and encouragement is going to stall, if not regress.  I cry because I remember how miserable she was last time.  I cry because all of this is outrageously unfair.  If I don't stop myself, it all becomes too much.

On top of all of this, we lost Chad's precious Grandma on Monday.  To say she was a big part of our family is an understatement.  Chad's family is very small, and very close and her loss, in addition to losing his Mom just months ago, has been tough to say the least.  She was so precious to all of us.  It's hard to imagine our family get-togethers without her there, running the show.  2016 is proving to be an unbelievably difficult year for us.  We have lost three integral parts of our family, Chad's Mom, my Grandma and now Chad's Grandma.  All three of these women have left gaping holes in our hearts, and we grieve every one of their losses in our lives.

And now we face another challenge in Elena's health.  I am doing all I can to keep my mind focused on the now and my heart trusting God in all this.  It's literally the only way I can fathom getting through everything.  I know each challenge in my life proves His faithfulness to me and helps polish my heart, refining me.  And I'm so thankful to have those promises and to know all of this isn't on my shoulders alone.  Without that knowledge, this would all be impossible and I no doubt would be maxed out with anxiety and fear.  Although I'm admittedly struggling, I do have peace and comfort that is keeping me afloat.

I feel all your prayers and am often overwhelmed by the support we have.  We are so appreciative to all of you who have reached out and offered help.  I have a very sweet friend who has graciously  set up a meal schedule for us, both after we return home from New Jersey and for when we have a baby in late August (uhhhh, sometimes I forget THAT IS happening).  I know several of you sweet people who read my blog have already reached out to me in that regard.  If you feel so inclined, you can contact my friend, Jenny (, as she is officially the "Meal Master"! :)  You can also contact me and I can get you in touch with her.

Thanks to all of you lovely people who follow our journey (all the ups and most typically downs!).  I feel like this is life.  All our situations and circumstances are different but it's all hard in it's own regard.  This is our life, not necessarily the one we dreamed, but our life nonetheless.  It's filled with far more blessings than challenges but needless to say, the challenges prove quite challenging!  I so appreciate each of you who hold us in your heart and love and support our girl through her difficulties.  We could never express how much it all means.  I'll be sure to keep you updated in the next few weeks.  Just bear with me.  There's a very good chance I'm going to be a ball of emotions!

The sweetest girl there ever was....

Saturday, June 11, 2016

It's Happening

Good news is, miraculously, in a matter of three days, we managed to get a surgery scheduled.  This is like seriously unprecedented.  Just the last time, it took like a thousand phone calls and follow up and like two weeks just to get assessed.  So, it's been so encouraging to us to have things already "work" out in a matter of days.  Prayers answered.

Her surgery is scheduled for July 8th, which is even more bittersweet because her 5th birthday happens to be July 9th.  Some birthday, huh?  Our precious little girl has endured so much in her five years, it just breaks my heart to add another one to the list, especially on her birthday.  We are relieved that things are set and we can address her hip before things get worse but using the word "bittersweet" just doesn't do what I'm feeling justice.  It's hard to describe heartbreak and gratitude in the same breath.

For now, we are doing what we can to keep her hip stable and save it from further damage.  This includes bracing her, increasing meds to keep her muscles relaxed and keeping her hip in an "in-the-socket position".  Currently, she is scheduled for a more invasive procedure than she received last time due to the severity of her dislocation.  This, obviously, adds to the uncertainty and stress.  We are fervently praying and asking everyone we know to pray that, upon her examination in New Jersey, that she won't end up needing the more invasive (ie more painful, more terrible) procedure.  I'd also like to ask you all to pray for me and baby.  It's an incredibly stressful time and I'm doing my best to remind myself that I can't be 110% right now, that my health and baby's health are vital to this all going as smoothly as possible.  I'll be 33-34 weeks pregnant at surgery, so prayers that baby and I remain healthy for all this are critical too.  Lastly, please pray for continuity and ease in getting all necessary insurance approvals and medical clearance taken care of in this short amount of time.  This can often be a nightmare and the WORST part of this situation.  So prayers for all this to be as smooth as possible are a necessity.

Thanks to all who have reached out, been praying and offered help in the last week.  We are doing our best to stay calm, plan accordingly and most of all, trust that all this sits firmly in God's hands.  So much of this is far beyond any control we want to place over the situation, and trusting Him is the only option.

"The way we deal with uncertainty says a lot about whether Jesus is ahead of us leading, or behind us just carrying our stuff." -Bob Goff

"Cast your burden on the Lord, and He will sustain you; He will never permit the righteous to be moved." -Psalm 55:22

Wednesday, June 8, 2016

A Lotta Good & A Lotta Prayer

We've hit the ground running this week.  The past two weeks have been such a nice reprieve.  We actually had play dates, and zoo dates, and let's do whatever we want days.  Which for us, never happens.  We were busy but good busy, not run around from appointment to appointment busy, which was a great change of pace.  This week, back to reality.  Summer schedule is in full swing.

I want to first say thank you to all the kind messages I received on my last post.  It was actually a really great response, which I appreciated.  Typically when I have any kind of "I'm struggling....this is stinks sometimes" posts, I (really, Chad) get flooded with concerned responses and people thinking I've gone off the deep end.  And while knowing that people love and are concerned for us is nice, that's not always the most helpful response.  I received several notes from wonderful people just saying, "me, too" (which fellow Traders Pointers can appreciate!).  I can't tell you how much I appreciate when people share their experiences with me and come along side me to tell me they struggle with similar things too....even if their life situation is totally different.  It makes me feel like I'm not out on crazy island, there's others there too! :)

So, thank you!  Thanks for understanding that this blog isn't about how grand life is or that I'm always Positive Polly and just want to share my ups.  To me, this is my life..the good, the bad, the ugly and the beautiful.  No false pretenses here, folks.  You get me in all my honest, over sharing! :)

Another giant thank you is needed for all you wonderful people who continue to follow our family.  An amazing, nearly $5,000 was raised by all you generous folks for Elena's Walking for Dreams.  FIVE THHHHHH-OUSAND dollars!  Our family could never thank you all enough for your generosity in supporting Elena and the people who bring our family hope.  So a giant hug to all of you who donated on behalf of our girl.  You're all awesome.

Elena finished up her spring swimming program last weekend, which I explained was why we couldn't actually participate in the walking part of Walking for Dreams.  I promised you all a video of how much she loved swimming.  And of course, since I promised, Elena decided to only perform a fraction of the excitement when Dad pulled out his camera to capture it for me.  So, below is a video of a semi-excited Elena swimming.  You'll have to turn up the sound to hear her squeals and it's a little dark, but you'll get the idea.  Good news is, she starts swimming again today with her PT and OT from school for the summer.  She did this the past two summers and loves it equally as much.  We are so glad she is able to do things she loves!

And to round out these random thoughts I'm sharing with you today, I must end with a giant, huge, enormous prayer request.  My apologies in advance for the somewhat vague-ness of the following prayer request...I just don't have a ton of information right now so will be sharing with you as it becomes clear to us.

We suffered a major setback with Elena this week.  You may remember that she had to have surgery on her left hip back in November 2014.  It was pretty terrible.  But even though we had to travel to New Jersey for the surgery, it was way less terrible than the alternative surgery recommended to us.  Well, her right hip has suddenly...and I mean SUDDENLY....entered the we-need-surgery-immediately phase.  As you can imagine, surgery on your child is always dreadful and then you sprinkle in the fact that I'm having a baby in a little more than two months, Elena's to start Kindergarten exactly two months and the timing of all this just couldn't be more awful.....we need major prayers.  I've had my major Mom freak out already and have been praying fervently for peace, calm, peace, calm and more peace and calm.  These things are always a thousand moving parts and I just don't know how this one is going to turn out.  But, I know it's in my Father's hands and per usual He is in control (not me).  So just keep our baby girl on your prayer list.  Pray that her hip can "hang steady" and not worsen before we can figure all this out.  Pray for Chad and I to be calm in the midst of a thousand reasons to panic.  And pray for the doctors, insurance, travel details to all be worked out (this always tends to be the miraculous part).

As I said, we don't really have any other information besides her hip needs surgery and that there's one doctor in the world who we trust with it.  Everything else is up in the air.

We so appreciate all your love and prayers.  I'll let you know if/when things change.  In the meantime, I'll be alternating between phone calls and prayers.