Tuesday, October 25, 2016

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."

Sunday, January 24, 2016

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.

Monday, October 26, 2015

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.


Matt, Becky, Kate and Micah

Monday, October 12, 2015

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.

Saturday, September 12, 2015

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.

Tuesday, August 11, 2015

Fear and Disconnect

Bear one another's burdens, and so fulfill the law of Christ. ~ Galatians 6:2

The image of a roller coaster fits as a theme for this summer. Not only have we been emotionally up and down, but the more intense roller coasters harness each rider individually. Over the last few weeks, Becky and I have had distractions that have helped keep us in denial as well as help us to remember each other. When we all got back together a week and a half ago, things got more difficult because Kate was with us, we saw her fingers and we have watched and listened to her struggle with and cry over her crappy future.

The worry of bringing up fears that have been momentarily forgotten, or worse, introducing a new fear has left all of us too scared to talk to each other. Sunday was a perfect example of this because it was truly such a crappy day. Kate has not been sleeping because Plaquenil causes very vivid nightmares. As such, she stays up late and wakes up early while waking up in the night dreaming about pretty rotten things. The result is that she is more emotional and grumpy. I got her to talk to me, knowing it wasn't just exhaustion, and she told me she is scared about scleroderma. This meant that on Becky's birthday, Kate was not doing well, and I needed to figure out how to shoulder this weight for both Kate and Becky, in a feeble attempt to help Becky celebrate her birthday.

The day ended with a backed up sewer line, Becky in tears and an expensive call to the plumber we can't afford late on Sunday night. The events ended with me spiraling into anger and frustration yesterday, alone trying to shoulder the weight of the day before. The difficulty of this is that there are times where I must take on this weight, there are other times where Becky will have to take on the weight and then there will be times where neither of us can take on the weight. In our efforts to take care of each other, and especially take care of Kate, we are having to sacrifice ourselves. Becky talked to the children yesterday after I blew up and told them that we need to do what we can to help each other when one of us isn't doing well. Yesterday that was me, today it might be Kate and this weekend might be Becky.

*I have debated on how to handle this blog in our new stage of life and I do not want to have this be a "Christian answer" place. I believe that God is big enough to handle my fears and struggles and anger. Any readers must therefore see our family's faith as fluid: we will not waiver in our knowledge of God's love and our love for Him, we will waiver in our understanding of Him. As such, I will not always post verses, draw conclusions and wrap things up nicely.

Monday, August 03, 2015

An Invitation to Weep With Us

Are there even words to say? Is there any comfort that would suffice? So many things feel like empty phrases or feeble attempts of consolation. When I attempt to talk to Becky, knowing there are so many tears, fears and emotions beneath the surface for both of us, I find myself at a loss for words. I cannot tell her that everything is going to be alright, because it won't be. This road we are on is long, dark, heartbreaking, painful and lonely. I have come to the conclusion that all I can say is that we will make it through, because that I know and getting through is simply going to be crappy. Whatever "through" means, I know we will get there, not because of ourselves, the bootstraps are broken, but we will get there through God's grace and love.

Since we asked for very non-descript help, my lawn was mowed, dog poop scooped, meals have been prepared and gift cards have been received. These have shown us a family we did not know we had. The phone calls, the pints and the text messages have been appreciated and mean so much. And we know it is tough to show us the love of Christ. The tough aspect for us going through Kate's diagnosis is doing so alone. We saw one friend yesterday who just wrapped each of us in her arms, it was a hug that meant more than she knew and that is what we need more often.

Job's friends are notorious for putting their feet in their mouths. Their accusations of Job's sin and wickedness are indeed a large part of the book of Job, but I have often been struck with their initial response:

Now when Job’s three friends heard of all this evil that had come upon him, they came each from his own place, Eliphaz the Temanite, Bildad the Shuhite, and Zophar the Naamathite. They made an appointment together to come to show him sympathy and comfort him. And when they saw him from a distance, they did not recognize him. And they raised their voices and wept, and they tore their robes and sprinkled dust on their heads toward heaven. And they sat with him on the ground seven days and seven nights, and no one spoke a word to him, for they saw that his suffering was very great. ~ Job 2:11-13

A couple years ago, some friends of ours lost their baby and I took these verses to heart, even attempting to feebly emulate them. Now, we need this ourselves. This does suck. We don't know what to say. Seeing Kate and hearing her process through this is gut wrenching for us. No eight year old should be frustrated with the fact that she might not be able to play her DS or even hold a pencil someday. There are no words.

What we need most now are hugs and people asking us how we are, being ready for us to answer quietly or with unbridled truth and pain.