Saturday, June 9, 2018

A Thousand Losses

This path we are on is not an easy path. No parent is supposed to have to bury their child. Its supposed to be for people that get old and die in their sleep.

We have no regrets with Zachary. We went on a Dream Trip to Disney World, Sea World Orlando,  and Give Kids the World in September. We just returned from a great vacation in San Diego. We all went to Mary Poppins last week @ Arizona Broadway Theatre (which was practically perfect in every way). We were given lots of opportunities to be a family in the last year.

Zachary is in heaven now (with Charlie our dog who also died this week). Zachary knew Jesus and knew that he was going to heaven. Please if you dont know if you are going to heaven, ask us. We KNOW we are going to see Zachary again.

Now, Zachary can run without gasping for air.
Zachary can skip steps as he climbs stairs.
Zachary doesn't have to spend a few hours every week in one doctor's office or another.
Zachary can High Five instead of High Four.

Before Zachary was born, we had the option to abort Zachary. We know that life is precious and worth fighting for so we didnt abort. We knew it would be tough but that EVERY DAY was a gift from God. Zachary had a lot of miracles poured onto him. He should not have made it a week and we got four and a half GREAT years with him.

Its a nightmare that we are in right now. We wake up at night thinking that it was all a dream. Its not. The loss of Zachary breaks our heart. Is it possible to hurt this much? We have zero energy to do anything. We dont want to eat. We dont want to play with the other boys. We sat down for breakfast at the table and had to move to the counter because of the empty seat we now have.

But then we remember Zachary's smile and his laugh and his dogged determination to finish the task at hand and so... we get up and keep moving.  (This kid was a week or two from reading!!!!) 😂

This will be a long path that we dont want to walk. We are actually being carried thru it. Thank you for praying for us and helping us. For those that have reached out, please keep doing so. Its encouraging to us even if we dont have the energy to respond. This is exhausting just trying to survive.

We cry a lot. Its ok to cry with us. Please dont feel awkward to bring up Zachary in the days, weeks and months ahead. Its ok if you say something that makes us cry because we associate it with Zachary. Zachary's death is a thousand losses. (Good friend explained this to us).  Zachary was our boy and its going to hurt for a very long long time. That is ok.

Ways to Help:

Go Fund Me
Celebration of Life Service - June 16th @ 10 AM. Click the link for details.

Keep Reaching Out - Please dont stop. Even if we dont respond.

What funds we don't use for the Celebration of Life Service, we will donate to a reunion fund that will bring heart kiddos like Zachary and PCH staff together to celebrate the Hope the patients received because of PCH.

Thank you in advance!

Monday, June 4, 2018

Two more sleeps

As of tonight we have two more sleeps until Zachary’s heart surgery.  We are overwhelmed with the out pouring of love from everyone.  Thank you to everyone who is praying and has given gift cards and other gifts.   We are beyond thankful to you all.

As Wednesday approaches we are all more anxious.  Josiah and Micah are definitely feeling the stress as well.  The boys have brought up the surgery and asked specific questions as they think about them. We answer honestly without being brutal.

Questions like "Will they use a knife to cut my chest open?" If I say yes, every time he sees a knife, he will think about his surgery. If I say No, I am lying.  But if I say they use special tools to designed to help keep you strong, I answered the question without stepping on a landmine. We have had to pause and think about our words a lot these last few weeks.

We would like to ask for prayer specifically for the older boys.  That they can just enjoy VBS and then basketball camp next week. 

We will update you all as we get them during his surgery on Wednesday.
Me: Remember Zachary, smile nicely as you walk down the aisle for Uncle Daniel's Wedding.

Tuesday, May 29, 2018

Half a Heart - Twice the Joy (Vacation Update)

We purposely planned this vacation two weeks before Zachary's surgery so we could have fond memories to reflect upon as we embark on this next chapter of our story.

Vacation was everything we had hoped it would be.  Peaceful relaxation, age appropriate adventures, salivating eats and family bonding were the goals of this trip.

Becky found this AMAZING condo 10 steps from Imperial Beach.  We were able to play on the beach as often as we could/wanted. With the kiddos, we constantly ran back and forth from our condo to the beach to get food, drinks, potty breaks, sun screen and toys.  The close proximity made those trips simple.   We loved hearing the ocean waves gently crashing on the soft sandy shore in the evening and the sunsets were awe inspiring! We spent two full days on the beach but went out every single day.  The last day was the best weather for the beach.  Becky and I sat out on our chairs for hours! Definitely relaxing!

The USS Midway is ranked in the top 10 of ALL museums in the world. It also just so happens to be docked near downtown San Diego. We spent over 6 hours exploring the Command Center, Flight Deck, Engine Room, and Hanger Deck. Yes, this behemoth ship kept us all fascinated with life aboard a ship commissioned in 1941. The Flight Deck had many planes and helicopters that you could sit in the pilot's seats, push buttons, pull levers and shoot down the bad guys! :-) What a fun and interactive adventure!

LegoLand and San Diego Zoo were also on the itinerary.  We did not rush thru either location but explored each with excitement and blissful happiness.

We found some great restaurants to eat at. Coasterra, Coronado Brewing Company, Red House Kitchen, Filippi's Pizza Grotto and Brigantine were some of the fantastic restaurants we visited.  Yelp was our friend to find these great places.  All were places that we want to return in the future!

We were able to forget about the upcoming surgery and hospitalization during this trip. Sitting on the beach watching the three boys play in the sand seemed surreal. Zachary seemed normal. Do we really need to do the surgery?  Heart surgery is such a challenging experience that if we could avoid it, we would. Sitting on the beach for our last day I was just thinking how surreal it felt to just be able and sit and do NOTHING!  No doctor appointments or anything.   Zachary seems so healthy and perfect, why do we have to come back to reality and face this next step?  I know he needs it, we pray he will be even better after surgery.  God knows what is next and we just lean and trust on him for the next steps. Thank you all for praying for our trip to be fun and relaxing, it certainly was. 

We continue to ask for prayer for the upcoming surgery on June 6th.  Prayer that we can all continue to stay healthy and just enjoy the week before surgery.

How to Help:  

Thank all of you who have supported us already! We are so thankful for the outpouring of love from you!!!!!!!

People have been asking us how they can help. We built a list cause thats how we do it.  Here are a few tangible ways:

-Pray! For the surgical staff, for the ICU staff, for Becky and I, for Micah, Josiah and especially for Zachary
-Come sit with us while we wait
-Visits while he’s recovering
-Gift cards (Uber Eats,  Rubios, Chick-Fil-A, Panda, In n Out, Salad To Go, Starbucks, Coffee Bean, Dunkin' Donuts, Jersey Mike's)
-Gas gift cards
-Gift card or cash to eat at the cafeteria while we are there

Half a Heart - Twice the Joy

Tuesday, May 8, 2018

Surgery on June 6

 We are in the next chapter of our lives with Zachary.  The last chapter has been relatively quiet with only a few ER visits.  This new chapter will be like walking down a hallway covered in broken glass.

We know that Zachary has to have this heart surgery.  He gets more and more tired as the days go on. By the end of each day he is usually a shade a bluish/purple and his oxygen saturations sit in the mid 60's (We live at like 99%). We are thankful we live in an amazing city with great friends and family and that one of the very best pediatric hospitals is at our backdoor. 

 Another surgery dredges up all the pain and dark days from the past. It means that Zachary is not doing well and needs this intervention to survive. It means that the surgery will require hours of waiting in the Waiting Room.  It means that Micah and Josiah have emotional trauma that will take them time to recover.

In order to prepare for this surgery we are going on a trip to San Diego. We will be spending some time on the beach, visiting Legoland, touring the USS Midway and visiting San Diego Zoo.  We are going to have a great family time and are going to really try to build strong memories.  We scheduled the surgery with just enough time to get this vacation in prior to it.  Pray that our vacation is full of encouragement and relaxation. 

Zachary's is scheduled for his third open heart surgery for June 6th.

As usual, Wikipedia best describes this surgery. There is a section on post op complications that highlight some of the giant challenges with this surgery. 

How to Help:  

People have been asking us how they can help. We built a list cause thats how we do it.  Here are a few tangible ways:

-Pray! For the surgical staff, for the ICU staff, for Becky and I, for Micah, Josiah and especially for Zachary
-Come sit with us while we wait
-Visits while he’s recovering
-Gift cards (Uber EatsRubios, Chick-Fil-A, Panda, In n Out, Salad To Go, Starbucks, Coffee Bean, Dunkin' Donuts, Jersey Mike's)
-Gas gift cards
-Gift card or cash to eat at the cafeteria while we are there
-The boys have asked for those Chewy Masks that the lady had on that video that went viral.

   *** Get this***
We are hoping to have the masks before the surgery so Zachary can be comfortable with it and then when he is coherent enough post op, we are going to show him the mask and give it to him once he starts walking again. We are hoping it will help motivate him to get better faster. We also plan on using Facetime with his brothers so they can all "chat" like Chewy. How funny will this be!

-Once we come home from the hospital have meals set up would probably be helpful as well.

These are just a few ways if you would like to help.  I know it’s hard to know how to help but prayer is always number one!  

We are so thankful for our support system and everyone who continually prays for our family.  This journey is not easy, but we choose to be thankful no matter what our circumstances are.  

Like Mother Like Son
First Heart and Trachea Surgery Feb 2015