Thomas

 

Thomas is my biological nephew - my sister's son. Through life events & circumstances Thomas came into my parent care as a toddler. When things changed with his parents and it became clear that reunification with them wasn't in his best interest my parents adopted him. 

Thomas is intellectually younger than his age of 20. He will always need supervision in live his life. 

When my mom died 6yrs ago my dad became a full time/single parent to Thomas. At that time keeping Thomas in his specialized education at his Amazing Special Education school became our primary importance. This was before my dad was diagnosed with MDS.  Life was ok. With some scaffolding put into place my dad was able to continue to work & manage things. Once he became sick and was diagnosed with MDS things became much harder. Simple tasks became really hard for my dad. Which in turn made my dad turn inward and stick close to home. Gone were the days of socializing out with friends and a more normal way of life. 

As my dad's MDS progressed it became clear that my dad and Thomas needed more help and in Jan of 2024 after telephone calls with my dad's doctor we made the decision that thy would move to Seattle. We set the date for end of July. Knowing we had lots to do before this could happen and having Thomas finish this school year was best. We all know these plans didnt work out as we'd planned. 

Fast forward to present - Thomas has been with us as a family since July. He is thriving. He is learning to be part of a family. And that includes family dinners, daily chores and all the ups/downs that go with living with 3 teenage cousins - 2 of which are girls.  You get the idea....it's always loud & at times emotional.  But he really is enjoying it and fitting in well. 

Our kids are doing well with the transition too.  It was challenging at first. It would be for anyone taking in someone you've never lived with and trying to adapt them into your family. There have been more highs than lows in this transition.  Bill and I are so proud of the way they have responded. How they have taken him under their wings. They work with him well and are so patient with him.  Our son told us during this that he is glad Thomas came now instead of years ago. That it's been easier than he thought.

Thomas brings so much Joy to our home. His enthusiasm for the small things brings a smile to our face almost daily. 

Bill and I have talked about this many times - what Thomas needed was a family. Not my dad's fault at all.  But he needed to be part of family unit. To have rules, a sense of belonging and have his confidence boosted.  And that's exactly what we have the privilege of providing for Thomas.

"God places the lonely in families" Psalms 68:6

God is in the details

 Team D is a phrase Bill coined when we got engaged. Anytime we had to get something done, had to face a challenge he would say "We're Team D - we got this".  Always in the coach mindset.  It's how I have signed our Christmas cards each year, how we rsvp to events, cards/mail comes addressed like this & when it's time to leave we call out "Team D let's roll" - it's our calling. To know us, is to know, we Are Team D.

When my father passed away the dual Guardianship I had of Thomas for the past 2 years reverted to me. Making myself & our family his guardians. He is now living with us full time. I will write a post later about how this is going & how our family is adapting.  

The other night a friend sent me a message. Asking if I'd ever looked at how Team D is spelled out. What? No! 

T = Thomas

E = Ellia

A = Addie

M = Micah

WHAT the heck?!  Mind literally blown!! She went onto to point out that the initials are also in Birth order! Here's where it gets interesting.......

Bill came up with Team D pseudonym 19 years ago! Long before we had kids or picked out names. And we never picked names according to this pseudonym. In fact Micah was supposed to be Lincoln & Addie was our hardest child to name. 

As my friend pointed out "In essence Thomas was the missing team member!"

Another crazy thing is that Bill always wanted a 4th child - I did not. Three kids in 3.5yrs will do that to you. And Micah always wanted a little brother. We got our 4th child & Micah got his little brother. (as Thomas intelligence is around a 2nd grader) And the kids relationship with Thomas is transitioning over to that of a little brother, not just their cousin.

God has been working the details out since the very Beginning - way back 19yrs ago when Bill was being cheesy creating our own family nick-name - Team D!  We continue to be blown away by God's provision, God's power & how he works out all the little details even better than we can imagine. 

- "And we know that for those who love God all things work together for good, for those who are called according to his purpose."  Romans 8:28

A candid discussion with Bill

Saturday morning at our breakfast date I had a honest & vulnerable discussion with Bill about Cancer. I asked him if I could share our discussion and he agreed.  What follows is our discussion in raw, honest words.

What went through your mind when you found out you might have cancer at that MRI appt? 

"I don't know what I didn't know yet, you were out of town & I was told it might be or it might not be. So I didn't know exactly yet and I had to wait. I was worried but not sure what I didn't know yet"

What went through your mind when you did finally know you had cancer?

"Fear & uncertainty at first. It's honestly cliche but in that moment I made a decision - it's how I'm wired. I face things head on. I could choose to be pissy & angry. OR I could continue to be positive and face this head on. I made a decision instantly in that moment that I was going to Fight and let God be God."

How has your cancer diagnosis affected you and our family?

"Me, Its made me more emotional & I feel like I'm on a roller coaster. As for the family - the kids don't openly talk about it. We have to pry things out of them. We've grown closer & stronger as a couple."

During this time what is most important to you?

"People. I've always valued relationship & it's always been a priority to me. But now spending time, being intentional. Putting my phone down more & living in the moment."

Anything else you want people to know?

"God is in control! And everyone has stuff but God is still on the throne.  Don't wait for something drastic like cancer to remind you of this. Ohh, I appreciate all the texts and calls. Please don't feel like you're bothering me. If I'm not doing well that day I might not respond but I will respond later. Remaining in contact with me through this important to me & gives me strength. Keep it up. And wear green on chemo days, send us your pictures of support."

God is still in control

 This week we had some setbacks. The setbacks were preventable. Who knew a breakfast burrito could ruin the trajectory of your plans?  When Bill called me I knew something was wrong...he was quiet & then I heard the cries. He was crying and saying "I messed up, I messed everything up". 

In that moment I need to comfort him & hit him upside the head were both raging within my body. I comforted him the best I could in those few minutes. Re-assuring him things were going to work out. Immediately after hanging up with him I stepped out of my office & took a walk sobbing. Why? Why did he eat that stupid burrito? That decision would now cost us a delay of 4 weeks starting chemo.

I let myself have those moments of disappointment & then made the conscious decision to move forward & give this over to God. Everything was truly out of our hands. Sure we could be upset & emotional but that wasn't going to help us. 

When Bill picked me up that day I looked him in the eyes and said "look, we can be upset but that ends now. We have to move forward & keep believing in God's plans. He hasn't forsaken us yet & he won't now",  Bill too had picked me up with his own pep talk for me. He said very similar words and we drove home in agreement. We were done being upset. God was fighting on our behalf and we would pray for his plans to manifest in his timing. Continuing to walk in his provision & Trust in Him.

Two days later we got the call. They'd found Bill a new PET scan appointment at a different hospital and his chemo was now only delayed 1 week instead of 4 weeks. We praised God & Thanked him for his provision. 

God is still fighting for us even when we feel disappointed, frustrated and abandoned. God is still there!

God's provision is Always on time

It's a no brainer that a cancer diagnosis or other medical diagnosis can be costly. In a quick google research I found that 34% of all cancer patient families go into medical debt during treatment. With 3-5% of those having to file for bankruptcy. 

Within days of finding out Bill's diagnosis my brain immediately went into overdrive anxious thoughts of money, cost, bills etc. So much in fact that I had my friends help me research our insurance to see about deductibles etc.... To say I was worried was an understatement. 

Bill applied and will be receiving FMLA during his treatment. So on days he misses work for treatments or sickness related to his cancer he will get around 70% of pay. Why not take sick time? Because FMLA also protects his job. Which although we aren't worried about his job, it is good to have that federal mandated job protection.  I do not qualify for FMLA because I do not work enough hours during the year to qualify. So anytime I take off will have to be my own sick time. I exhausted all my sick time in June when I missed the whole month from work. I will get 12 days Sept 1st and will have to manage those carefully. 

Bill and I have begun to make some financial decisions. Like taking his car off insurance as he will not be commuting to work. Still trusting in God's provision but trying to be good stewards of our finances. Our friends wanting to help did set up a Go Fund Me for us for some help.

But this post is about how God is Providing in very real & tangible ways.

Our son is 14, he has grown so much in the past year. He's hitting his stride and his growth dreams are finally coming to fruition. The downside to this is he needed a whole new wardrobe - new shoes, jeans and shirts.  Bill realizing this, knew this meant new hockey gear too. We had just bought new gear & skates last year when he switched hockey associations from Everett (green/black) to Kraken (navy blue/white). And when we had him try on his gear last week it was confirmed he needed all new shin guards, elbow pads and quickly would need new skates. His foot size would mean adult size skates = $$.

One thing about Bill is he is thrifty. Always has been! He will search for a good deal scouring used gear sites, shopping local used sports stores and gear swaps at the rink. You get the idea. He almost always finds a good deal. So his search began.

Last night - While out with a buddy (a hockey coach himself) Bill was talking about how much Micah had grown, how he now needed all new gear including pads & skates asap. His friend had just been given bags of gear by a family whose son had gone off to college. They told him to donate to a kid in need, his own kids or the rink of his choice. He looked at Bill and said "let's go back to my house and you can look through the bags. If you find anything that will work for Micah you can have it".  Imagine Bill's surprise to find not only new shin guards but also skates in Micah's new size.  Not only the correct size but BRAND new, never worn or baked! 

Another God moment - last year when Micah got new skates Bill had found a deal on extra set of high end blades. (in hockey having an extra set is ideal) But when the blades arrived they didn't fit the skates Micah had. Since they were non-refundable Bill couldn't return them. He put them away thinking he'd re-sell them or gift them but never got around to it.  He pulled them out and would you believe they fit the new skates!!!  What the What?!  

With tears in his eyes Bill told all of our children "Don't you Ever doubt God's provision!"

God's provision is perfect! His provision Always comes on time. 

As Bill's aunt reminded us "We must never forget that Our God cares about the small things as well as the big things in both good times as well as difficult." Amen!!

gofundme

Counting my Blessings

In my Thankful journal this morning I hit 6000 Thankful's. I have recorded daily Thanks for years. Today while I sit enjoying a great cup of coffee & fresh croissant I was quickly reminded that I would've never found this coffee shop if Bill wasn't a patient at Fred Hutch.  I wouldn't be here if he wasn't getting an MRI of his brain to check on tumor growth. 

Brain MRI , chemo, scans, ports, infusions are all terms we toss around now and have become part of our normal daily discussions. But here we are in the Summer of 2024 attending weekly appointments, lab draws, scans and more. We've been in more hospitals & seen more doctors this summer than Ever!

There is a part of me that longs for that Normal summer. However, in reflection this summer we have enjoyed more family time, cuddles, naps and togetherness (hello Olympics every night) than a Normal summer would've brought. These times we've had are far better and I am Thankful for them.

I am thankful to be by Bill's side as he fights this cancer beast that has invaded his body.  

I am thankful for summer mornings on our back patio with coffee and my bible. 

I am thankful for Bill's office bed where he can get restful sleep even if it's not in our communal bed upstairs. And this office bed has offered us a time to lay together during the day when we wouldn't normally have had this time together. 

God, in the middle of our messy, crazy, life & circumstances we can choose to rejoice, Because you are by our side. You are working on our behalf even when we cannot see it. We Trust & Rejoice in you for we know you fill us with Joy and strength!

"Bless the Lord, O my soul, and all that is within me, bless his holy name! Bless the Lord, O my soul, and forget not all his benefits"  Psalm 103:1-2

God's perfect timing?

 Is God't timing ever perfect? Does it ever work out how we want?

Sure, sometimes it does but I'm guessing if we were honest most of us haven't liked his timing.The timing of my dad passing, taking on a 4th child along who has disabilities along with Bill's diagnosis isn't Exactly the timing Bill and I would've planned!  

I have been sent this sweatshirt 4x in the past month. And each time I have chuckled and said "Right?!"

Here's the thing, the sayings like:

"God never gives you more than you can handle" OR "Everything happens for a reason" 

These are cliches that people have made up to make others feel better.  They aren't true statements that have biblical backing. In fact biblically speaking God never says you will be without heartache or pain. He never says he will not give you more than you can handle. 

What God does say is:

"My grace is sufficient for you and my power is made perfect in weakness" 2 Corinthians 12:9 

In Psalms 46:1-3 it says "God is our Refuge and Strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, the mountains tremble at its swelling."

So, as Bill and I are walking out these 3 Major life traumas we can see Gods hand, his timing in events. Would we have wanted to have all 3 at the same time - Hell No!!  But we clearly can see God's hand at work. 

A. My dad's passing - we knew my dad was sick. His appointment at Fred Hutch confirmed that in April of this year. He needed a bone marrow transplant to survive. The doctor looked at us at that appointment and told us "You are one bad infection away from dying". He was a month later denied the transplant by medicare. We moved forward with the him & Thomas moving to Seattle at the end of July. When my dad was found unconscious on 6/3 we still never thought when we put me on the plane that night that it would end in his passing. In fact we thought, let's get him better enough to travel & put him on a plane to Seattle ASAP.  God knew then what was coming just 2 days later when Bill would get the news that they'd found a spot on his spine & referred him to oncology.  And God knew that 2 weeks later the diagnosis would be cancer.  He knew that I would not be able to take care of 2 sick men. And it was one really bad infection, sepsis that ended his life here on earth.

B. Thomas - when my mom passed away 6 years ago we thought about bringing my dad & Thomas to Seattle then. After lots of prayer & weighing all the options Bill, my dad and I decided keeping them in Fl was the best idea. Our kids were a lot younger and bringing them to here would've been life altering for our kids and our family at that time.  Now, our kids are 6 years older and this move has been much smoother & easier,  I won't say it's been a cake walk. It's never easy bringing in another person into your existing schedules, home/family life. Let alone an adult with intellectual disabilities.  We are creating boundaries, expectations and rules for everyone.  He is acclimating well to our family & we are finding a groove. God knew that now was the perfect timing and not 6years ago.

C. Bill's diagnosis - although hard and not the path we'd choose to walk. We see God's hand in it. Bill will admit his faith had grown stagnate. He loved God and served him. But he could've been more passionate.  Noting like a cancer diagnosis to ignite your low burning flame again. He tells everyone that God is going to use this for a greater purpose. He shares about putting his hope in God not men. He is in prayer daily, sometimes hourly. He created a worship list that he sent out to others, in which he is continually adding to it. And he has told our children that we are going to praise God through the storm. 

So, even though this looks not like God's perfect timing to others, we can see God's hand all over it. As we walk these journeys together as a family we will do so knowing that God is our Refuge, God is our Strength and God is our conquerer.  And with Him on our side we will find peace & hope during our journey.