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.

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.

How to Help

Yesterday, Becky and I were talking about how people can help us. We talked about how difficult it is for us to be the ones asking for help, not the ones helping. We see our friends and family go through difficult times and we see how so many reach out to them, and even try to reach out ourselves, but we don't know how to ask for or accept help. I interacted with a couple of people regarding this topic last week and was reminded that by not allowing others to help, we are not allowing the Body of Christ to act as such.

Still, the problem remains that Becky and I would much rather loan our truck, mow a lawn or pack boxes than ask for help, not because of pride but because we are more comfortable serving than being served. For me, this is because I know I can mow my lawn, even though I haven't and this will be a busy week, so my asking someone else to do what I already should do is a challenge.

I also fear taking advantage of people and utilizing help now when we are simply going through emotional turmoil as opposed to later on, when life might be even more difficult. Scleroderma is a crappy disease and as we falter back and forth in accepting it as a part of Kate's and our lives, we know that it might eventually affect so much more than our emotions, it will be at those times when we will really need help.

We are also both introverted people, which makes us awkward dinner guests and people who simply do not know how to "put ourselves out there" in requesting help. The people who really have gotten to know us are those who have almost had to break into our lives, forcing us to become their friends, and we are very thankful for this. So, those who want to help need to break into our lives as well. We are often too scared or nervous to ask for anything, so we simply won't.

Saying all of this though, I have decided to create a short list of the status of our life and if you feel the need to help us, please break into our lives to do so.

1. We need prayer. It is easy to try not to think and easier to avoid accepting this diagnosis, it is not easy to put our trust and faith in God, to be present with each other and the Chillins.
2. I haven't mowed the lawn in two weeks.
3. The Chillins are gone until next Tuesday at grandparents' houses, but afterwards, they could use excursions and friends and I could use some time to work.
4. We know cooking "Real Food" is a hassle, so preparing meals is not easy but could help.
5. We have children and our house shows it.
6. We don't fully know how to grieve and not scare Kate (she still only know part of what is going on, she doesn't need all of the stress of what might happen) and need wisdom in helping her process.
7. We need the Body of Christ. Right now we need to grieve, we do not need to be told how much worse this can be, how God has a plan or anything. I don't think Becky really has it in her to try and talk much about Kate at all. We are scared and feel very alone with no idea how to remedy this. 

It is very difficult for me to even write these things down, especially knowing all that people did for us after our car accident last month (Summer 2015 officially stinks). Thank you for your love and support though.

The Devil is in the Details

Please pray for us. We are scared, Kate is scared and we are focusing on how we are going to respond. Yesterday, Becky was looking for a verse to focus on and came up with II Timothy 1:7: "... for God gave us a spirit not of fear but of power and love and self-control." This is now our family verse.

There is simply no easy way to say that my daughter is getting scleroderma. Even this last sentence sucks and ticks me off and makes me want to throw my slowing laptop. Yesterday, we went to Seattle Children's Hospital to see her rheumatologist and we knew it was going to be a tiring day. She had a pulmonary function test to start, then an echocardiography and her doctor appointment with a blood draw in there as well. The two tests went fine, the exam is testing our power and love and self-control.

During the examination, we saw Dr. Nanda's concern as she looked at Kate's fingers and when she told us that they are a bit shiny, Kate's face betrayed her fear. She looked to us for reassurance but we were not convincing; shiny fingers only means one thing, the disease we have prayed she would never see. This means that Kate is more or less in "pre-scleroderma," before she was simply "pre-something, maybe." Dr. Nanda began Kate on a treatment we have been holding off on, told us what the next step would be if things progress and Kate then had her blood drawn. Her fear got the best of her for that as I heard her scream in the lobby when she got poked.

After the appointment, we went to supper. The picture above is from our booth and it truly breaks me. You can see the utter fear in Kate's eyes. She is a smart cookie and could tell something is wrong. When we got back to Tacoma, I sat down on her bed and talked to her. At first she just asked about getting blood drawn, but she eventually asked the question I knew was inside: "Why did God let this happen to me?" I told her about Russell Wilson and Super Bowl XLIX, his conversation with God and the need to let people see him react to the loss while still praising Him.

Kate also asked what the disease was called, what would happen if they found bad stuff in her blood and what was going to happen. I told her its name and told her that what we are going to do is focus on what she has: rainbow fingers and skin that is shiny. I told her we will watch her fingers because they might get stiff and start to curl. She didn't sleep well, up past ten worrying about having nightmares about scleroderma. She doesn't know about systemic v. localized or anything like that, she knows what she has and that is what we are focusing on. We are waiting on the blood work, if it comes back positive for SCL70 or anything else, it means we are not in "pre-scleroderma" anymore but will be full-fledged.

As Becky laid next to me and cried last night, she lamented the fact that our eight year old girl grew up yesterday. We don't want this for her, we weep for her and we are all scared. This sucks and it is not easy to trust God, but we are and He is loving.

Raynaud's Sucks

     I have an application on my phone that tells me my social media history from each date.  Often, it is a  lame Tweet and sometimes cute pictures of my family, but last week two years ago was when we went to Seattle Children's Hospital for the first time.  The year leading up to that week and the two years since have been utterly draining for us.  Not only do we silently wonder and pray each time Kate's fingers and toes turn colors or she mentions a new pain.  It is scary and daunting living within this dichotomy of Kate being mostly healthy but probably will not be.  Adding to this has been Kate's Raynaud's getting progressively worse each winter.

      Last winter, Kate developed ulcers on her toes.  These ulcers are little sores that develop on her toes because they lose circulation.  Last year they were small little spots that simply itched and her doctor put her on blood pressure medication to help regulate her blood flow.  This year, she developed a very large ulcer on one of her toes and has been turning colors more frequently over the last few days with the sudden drop in temperatures.  These sores might only get worse as times progress.
     One thing we haven't talked much about much is that Becky developed Raynaud's about four month behind Kate.  Since we were walking through this with Kate, we have been watching Becky's blood work like a hawk with her exhibiting primary Raynaud's (Raynaud's that is just there, but no underlying auto-immune disease associated with it).  But as Kate's Raynaud's has progressed each winter, so has Becky's, and primary Raynaud's doesn't progress.  Becky developed ulcers last year as well, so we got her blood tested and she also has elevated ANA levels.  Her subsequent trips to a rheumatologist has resulted in the same diagnosis as Kate (she is fine, but probably won't be) with the twist of potential diseases being either Scleroderma, like Kate, or Lupus.

     What this means is that both of my girls are fine, but they probably will not always be.  This just sucks.  Walking through Kate's potentially getting scleroderma was bad enough, but now having Becky in the same boat has shut me down since April.  When she has needed me, I have certainly not been able to help her.  Even in the daily tasks of meals and caring for our children I have left her alone.  As the Fall has progressed and I took my class on Christian Spirituality, I have thankfully been challenged by friends and professors in my faith and how that affects my daily life.
     From here though, this means that we now have two in our house who make regular trips to a rheumatologist, and two in our house who need to constantly wear gloves (Becky is the worst offender in this area) and never leave their beds without bundling up.  It also means that we are constantly worrying about and praying against new maladies that seem to come up, even though most are harmless.  Kate has been asking more questions recently, and we have been honest with her, though we do not think she fully understands what it means yet.  We continue to try not to cause unnecessary stress for her, but she is slowly beginning to understand.
     Please continue to pray for our family, that we can put our trust in God, that our girls do not contract scleroderma or lupus and that God might somehow be glorified in this time.

The Next Stage w/ Kate Kate

     This has been a difficult weekend in our home as things are finally hitting, and not just Becky and I.  At cheer on Saturday, Kate's fingers and toes turned white.  This is common, but it took a little longer for them to turn back to normal, cost Becky one of her socks and prevented Kate from fully participating.  It broke Becky's heart to see her little girl struggling to do something she loves and it dawned on Kate that she has a new normal and her life isn't going to run as smoothly as she would want it to run.  Both girls were weepy and struggling, it was not been easy.  The perfect solution was for them to enjoy Five Guys Burgers and Fries (their menu is mostly okay, but still a rare treat for us as we eat "Real Food").

These girls love their "foo fries."

 

     When they returned, Kate took a hot shower and Becky proceeded to check her toes for ulcers.   Remember, her Dr. told us to keep an eye out for them and let her know if/when they appeared.  We found three.  You will see in the first picture an ulcer on her "ring toe" that is quite red and "active."  On her middle toe, the white spot is an ulcer that is healing.  In the second picture, you will see her pinky toe is red and appears raised on top by the toenail.  She has weird toes (and toenails), but that is also an ulcer.

     This brings us to tonight, when Kate swallowed (i.e. held until it dissolved) her first pill, one that she will probably take for the rest of her life.  This is a difficult time for all of us.  The pill is a common blood pressure medication that will, prayerfully, prevent her Raynaud's episodes and therefore prevent ulcers.  We are hopeful that this will help curb her episodes and the pain that goes with numb appendages.  There are potentially common blood pressure side effects like dizziness, which is difficult to grasp in itself, but this seems to be a relatively safe medication.  For those who know medications or want to research, it is called Amlodipine.

~As we just tucked Kate in for the night, we ask that you pray specifically for tonight and the next few days as her body adjusts to external influences.  Specifically, we pray she doesn't get too dizzy or experience any other adverse side effects.

~Additionally, we ask you pray for her as she wrestles with the fact that she has to go through difficulty and this sickness.  She told Becky on their date that she just doesn't want to have to go through this.

~Finally, we ask that you pray for our family as we go through this together.  As parents we hate seeing our girl not able to "be normal."  Micah is still in "Micah Land" with nose gardens, taco beards and backflips that make you amazin', but he sees our worry and knows Kate will cry at the drop of a hat (or impatience of a dad...).

Thank you for walking with us, thank you for praying for us.

January Seattle Children's Visit

Hello Friends and Family!

I wanted to update all of you on Kate’s appt. at Seattle Children’s Hospital yesterday.

We go back every six months to see if there is anything new going on and to make sure we are on top of any new symptoms that would point to an auto-immune disease.  Remember, her blood-work shows that she has a good chance of contracting an auto-immune disease at some point in her lifetime.

For right now, she only has Raynaud’s (here is a link explaining what it is).  This causes her fingers, toes and (this year) her face to turn red purple and white in response to temperature changes.  Over the last few months, her color changes have become more frequent and recently she has had an “itchy toe” we didn’t think was anything big.  When Kate’s Dr. looked her over, she said the toe had an ulcer (sore), a result of her Raynaud’s.  If the ulcers continue, the next step is medication, specifically Vasodilators to help regulate her temperature changes and prevent further ulcers. If they do persist, there could be further complications resembling gangrene.  

Becky talked to Kate and let her know what we might need to do regarding medication, Kate took it just fine. Dr. Nanda told Becky and Kate what to look for regarding ulcers and she might have found a second last night after her shower.  In this sense, Kate is handling things well.  We have made the decision to not tell Kate about future possibilities, just what presents.  We do not think Kate needs to worry about what might happen, just to be aware of what is happening.

For us, we are worried parents who don’t want anything bad or difficult to happen to our little girl.  We need to watch out for further joint pain or shortness of breath as well as other symptoms that would point to an auto-immune disease.

We ask for continued prayer for:

-Kate’s health, that this is not the beginning of more ulcers, joint pain, etc.

-Kate’s keeping herself warm when her fingers and toes freak out.

-Becky’s and my peace of mind as we worry this is just the beginning of a long journey.