And Another Thing

I often ponder the friends of Job. In my vocation, I attempted to emulate them with every patient and family I encountered; when it comes to my friends, I strive even more to do the same. Those who know me automatically think of the bad example they laid forth and, perhaps, thought “Why yes, Matt does struggle to keep his trap shut.” I wish I could disagree, but this happens naturally for me, so there is little effort required for me to emulate Eliphaz, Bildad, and Zophar. No, the piece I attempt to echo is to sit in the ashes and not say a word. But what got Job’s friends to him to begin with? When Job’s life digressed to misery, and each friend heard about “the next thing” that happened, what could possibly go through their mind?

“Job lost one third of his wealth!”
That sucks! I’m sure he can rebuild.
“Job lost another third of his wealth!”
We should form a business partnership that will help him.
“Job lost the last third of his wealth!”
We will start a meal train and find Job a job.
“Job’s children all died!”
Holy $#*+! That guy cannot get a break!
And so his friends went to sit with him because his life was horrible.

    
Sometimes, I feel like Job. Often, I feel like Job. I feel like Job.
    

Kate has been sick for eleven years. Eleven years of blood draws, EKGs, PFTs, blood thinners, medicine, not that medicine, this medicine, chemo drugs, etc. And that is just to treat her. She has cold digits, sores on her toes, stomach aches, heartburn, and moodiness. That last one might be associated with her age. She has endured more than most people I know, but most people cannot tell. Like her mama, Kate is strong and keeps things to herself, sets her jaw and shows us (and the rest of this world) that she will get through what scleroderma throws at her. She has her next Children’s appointment on the 21st. With each appointment, the underlying fear tends to rise from the depths of “ignore it and it goes away-dom.” This time around, she will undergo a swallow study to see if this damn disease has reached her esophagus or if it is stress and anxiety taking its toll. Please pray for her, pray for us, and pray for her care team.

Becky has been sick for nine years. She readily endures blood draws, this infusion, that infusion, insurance denials, CT scans, injections, MRIs, and daily medications. Again, this is only to treat her ankylosing spondylitis. Daily, she has cold digits, left foot swelling, torn hip labrums, sore hips and lower back not from the torn hip labrums, brain fog, fatigue, and a ridiculously verbose husband. Her canonization should be complete next year. This is where Kate gets it, because Becky does not show how she is actually doing. Most recently, she has sought help for her hips and lower back and her appointment last week was not hopeful. She might not have any medical options, she might just hurt the rest of her life. Becky is discouraged, afraid this is in her head and she is weak, and grieving the loss of the life we dreamt of as dumb 21 year old newlyweds.
 

Even these last two paragraphs only tell some of the story. I just feel like it is too much to relay the physical and emotional strife we are going through with Kate and Becky’s health. It is too much and what was looking up has degraded. Am I whining? I feel like I’m whining. I hate that, I fought hard to not be a whiner, though I know I still whine.
 

We finally found a school Micah loves, where he thrives and connects. He cut off the world’s worst mullet last week. It is wonderful. But Micah is not doing well. His anxiety prevents him from family and friend relationships. It keeps us from relationships, Church, and even family. It is not good and I do not know what words describe its impact. Finding help in Spokane is near impossible, too. He needs a psychologist, hard to find. He needs a psychiatrist, even more difficult to find. And then he had a seizure. That was scary as hell. His EEG came back normal, he was anxious and has a family history of seizures, maybe just the one? Did you know you have to have a 504 plan to go back to school after a seizure? He had another last night. This time I didn’t catch him, as the goose egg, bruise, and scrape can attest: I couldn’t catch him. It was scary as hell, again. And his life is changed by it. He can’t get his license until 2.5 years after his last seizure. He is afraid of what else this is going to impact in his lifespan. We are afraid to leave him alone. We jump every time we hear a thump. We are treading in trepidation.

You see? Just one more thing, and then another, and another. So much is so difficult right now. It is scary. It is overwhelming. It is lonely. We would give so much for a chance to just be whelmed. I feel like a burden, not put together, and weak from the second paragraph to now.What do I even say next? This proud family does not have much left on which to stand. We have jobs, praise the Lord. We have an amazing house, praise the Lord and thank you Ron Pyle. We can see the many many things we have to be grateful for. And there are many. But, right now, in this moment, the hard and the heavy feel like a little too much. We are longing to breathe deeply, but right now, we do not have enough breath in our lungs.

August 2019

50+ nights away from home, 25+ flights, 3 infusions, multiple blood draws and a few tears. This summer has been a challenge for our family. I started a new position supporting families through organ donation. The orientation and on-boarding process has kept me away from home and traveling from June through August. It has shown me that my wife is so strong, and my children still do not do their chores.

Kate’s last appointment was in July, and it showed us her scleroderma is not stopped, but is slowed. We were told some of what we chocked up to sun sensitivity is actually a rash from her scleroderma. Other issues are also potentially associated and enough for us to make sure we keep an eye on things. The added symptoms have done more to bring Kate to realize this is life long and ask questions that leave all of us in tears.

An added challenge for us, is that Becky’s health is not holding up. She has been diagnosed with ankylosing spondylitis, which is a degenerative, autoimmune arthritis. This diagnosis has been difficult to come by and has also not been easy. Becky has been through a couple of medications, and is currently getting infusions that take quite the toll on her. We had to make the tough decision to stop photographing weddings for the time being as a result. She wouldn’t dare give up the rest of the photography she does, however.

This summer has worn us out, but we are so grateful for my completion of CPE and my new position. Becky has been asked to be an elder in our Church and Micah was able to go to Whitworth’s Camp Metamorphosis. Camp Spalding and friends have consumed Kate’s time. Through the challenges, the pain and medications, we are constantly amazed by the strength and compassion of our children. Now, if we could only get them to do their chores.

One Year

It has been one year since we began giving Kate weekly injections of methotrexate in order to combat her scleroderma. One year of putting poison into her and praying it helps. Kate has proven to be stronger than I could have even imagined, going from screaming and crying the first shot to cracking jokes and even rolling her eyes at me, on occasion. The turning point was her first appointment after her shots began because her doctor said that there was no progression and the shots were helping. Praise the Lord, there has been no progression.

One reason this update has taken so long to formulate is that the news has been good and we have therefore been operating on auto-pilot. It is difficult to explain the constant fear that exists with joy for each day nothing changes. Neither of us let ourselves dwell on what could be and each time we notice something, anything, our hearts stop with trepidation that this could be a new symptom or something worse. We can't think about these things, because we don't know what will happen. Specifically, Kate has Limited Systemic Scleroderma, realistically, a few of her knuckles are slightly shiny and she turns colors when she gets cold.

In this last year, we have been so thankful for everyone who has helped and reached out to us. Driving down the road, I remember the team that came and helped us clean out our garage, the friends who mowed our lawn or the family who has bathed us in prayer. We could not have asked for better support system and we thank you so much for everything you have done and continue to do to support us.

Moving forward, we simply pray this medicine continues to help and that each trip to Seattle Children's brings the news "no progression."

Celebrating Small Victories

It has been three months since Kate began her new medication, a shot of methotrexate every Friday, and we prayed she would be able to get used to the small needles by now. Unfortunately, her fear and anxiety only grew and grew, until Friday. For the first time, Kate did not cry when she got her shot. This journey has been very difficult for Kate as she initially accepted her scleroderma but has since gone into denial, saying the medicine is to help keep it from coming.

This has shown us the difference in how both of our children have dealt with life. Micah, in his unique and Micah way, has struggled to handle his emotions and struggles with an pessimistic attitude. Kate has become emotional and overwhelmed easily. They are both struggling and we struggle to support each well. One has a more emotional response, the other more spiritual. Therefore, Kate's bravery and strength this past Friday was so great and has meant so much to us and we must celebrate this seemingly small thing.

We also celebrate all of the friends who have come around us and Kate. She is truly a blessed girl who has been supported and loved. This support has helped draw her out of fears, though this is a consistent struggle for her and one we do not usually handle well since we are so scared ourselves. The photo above is of Kate and a number of her good friends at an NWCS cheer clinic yesterday. They are all so gloriously goofy and sweet. Thank you to everyone who has reached out to us and Kate, we truly appreciate you and you do not know the impact you have had on our lives.

Right now, we ask for prayers as Kate and Becky are currently driving over the pass for Kate's next check up at Seattle Children's. This has been a point of anxiety for Kate in particular as the last two appointments have not gone well and each time she has added a new medication. She also has blood drawn each time and she still hates needles. We pray that nothing has progressed and there are no new treatments added. The appointment is at 2:30 on Tuesday, please pray for peace, comfort and nothing new.

New Normal, An Update From Becky

We just wanted to share an update with you all on Kate. Matt and Kate headed over to Seattle this past week for an appointment at Seattle Children's. When we were there over the summer they started her on a new medication as the signs of Scleroderma were beginning to present. They did the gamut of testing and set us up to come quarterly for appointments.

Thursday, Matt and Kate spent some time with the doctor. Poor little one got her blood drawn once again, a thing, if you know Kate, she despises and boy does she let people know about it. At least we know her lungs are healthy :) It seems there may be some progression in the disease in her fingers and so they decided to start her on yet another medication. It's a low dose of a medicine often used (in high doses) for chemo. However, it is supposedly a wonder drug that will help keep stiffness of her fingers at bay. Something she was worried about. Unfortunately, it means a shot we have to give her once a week. This girl is going to be so used to needles after this. Between this and needing to get her blood drawn every time she has an appointment now, she's going to be a pro!

We would love for prayer for our little one as she gets used to her new normal, shots and all. Also for peace and comfort for her. She's a smart little cookie and though Matt and I have promised to never lie to her, we also have promised never to saddle her with more than necessary. But she's perceptive and she's trying to process things. We would also ask for prayer for the family as a whole. This last appointment solidified it. Scleroderma is here. We are so blessed by her amazing doctors and even the research that's being done at Seattle Children's on this very thing. We are trying very hard to not let our minds wander to possibilities but simply what is right here right now in front of us and deal with only that.

Thank you all for your love and support.

Blessings,

Matt, Becky, Kate and Micah

Hope Seems Fleeting

In Core, we talk about how when someone asks "How are you doing?" they usually do not want to know the actual answer, they want to hear "Good" and to keep walking. For some people, they can't simply say good and respond outside of the culturally accepted norms for one reason or another. Often, we learn who these people are and simply do not ask how they are doing and instead talk about the weather, the Seahawks losing or Netflix.

Right now, I cannot, in good conscience, respond to this question with my carefully worded "Fine," I must write down how much life just sucks. Becky is better at responding appropriately, though I do not think her typical “Good” is, in fact, good. So this is your warning that I’m about to betray our mental and emotional states at this moment.

We physically hurt. Specifically, my elbow hurts quite a bit, a carryover from the car accident the children and I were in on June 11th. I am going to Occupational Therapy twice a week to get it worked on and fixed, but the headache of dealing with the insurance company causes more physical pain. Also, Becky's foot has been swollen since about the same time this summer and no one knows why. She has had x-rays and an MRI and the podiatrist does not have a clue as to why her foot swells every day. It is discouraging for her, expensive for us and frustrating all around.

Speaking of Becky, she is now on Plaquenil too. Since she has secondary Raynaud's, the same blood work as Kate and has generally been a few months behind her in symptoms, Becky's doctor prescribed the same medication and is telling us we are looking for the same crappy disease with her. And it is a crappy disease. Someone once told Becky (in regards to Kate) "At least it isn't cancer." That is not the right thing to say. Scleroderma sucks. I never want to try and figure out which sucks more, cancer or scleroderma, but I can assure you, neither option is happy.

Kate. Our beautiful little girl. She is more scared than we are even. This entire weekend she has clung so tightly to Becky. She has broken down into tears at the drop of a pin. Doing her math homework yesterday had her weeping. The anticipation of a math test today shut her down. It isn't the math, it is the fact that we have another Seattle Children's appointment on the 22nd. It is the little things that remind her that she is sick. It is the cold that turns her fingers purple during Church. As we held her and she struggled to put the heaviness she feels into words, she just cried silent tears, which is scarier still.

How are we supposed to help a beautiful 9 year old girl wrestle with her anger towards God, her sadness and help her understand how unfair it really is, while still assuring her of God's and our love for her? She shouldn't have to go through this! She should not wrestle with things that have killed the faith of Theologians and pastors and saints who faithfully served God for decades!

Life really sucks and though our minds know and try to cling to our one true hope in this life, we struggle to encourage our hearts to do the same.

From Helper to Helped

Neither Becky nor I have ever been people who are easily able to accept help. It has always been easier for me to lead a group and clean someone else's yard or offer to mow a friend's lawn, now, we are the ones who have had a gift card for supper dropped on our doorstep, the Northwest Christian Volleyball Team organize our garage and clean up our yard, or friends show up and start mowing our ridiculously overgrown lawn. Even though these are things we would have eventually done, the weight of not having these menial tasks hanging over us is profound. For this, we are so very thankful and do not know how to say thank you enough.

As we get back into the daily schedule of school and work, life has become increasingly busier and more difficult. We find ourselves in a weekly/biweekly pattern of Kate being nearly paralyzed with fear and anxiety while Becky and I don't even know how to respond to the other's smiles. Beyond anything, what this shows us is how far we are from really being "okay" and still need help. One of the greatest things about the people who have helped us thus far is that we didn't really know what we needed, they just did it. When people are helping or offering to help, I am realizing that I need to just let them help however they want, instead of trying to figure out how they can help.

The one way I do know how people can help is to simply give us a hug and ask us how we are doing. Like my previous post, this road we are on is incredibly lonely. Sometimes we have sat across from people we have known for years, just hoping they will ask how we are or how Kate is holding up. Even sending us a text letting us know you are praying for us or a funny gif or meme can do so much to help us not feel alone. So please, ask us how we are doing, give us a hug or shoot us a text, we don't know how to ask but we really need our family right now.