Learning

The last month or so has been a huge struggle. There are no words that can explain what it's like watching your child suffer in pain. You do not get used to it and it doesn't get any easier, that's for sure. The fact of the matter would be that it gets HARDER every day that she is in pain. I wish it was me that was dealing with all this, but God doesn't play "Let's make a deal". He won't let us trade places, even though my sweet girl said that I wouldn't want to even if I could.

Even in these difficult days there have been blessings. One would be that Haley has been invited to Camp Boggy Creek for us to go for a family weekend with other kids nad families dealing with rheumatic disorders. Her doctor said not to expect to see any other kids there with her diagnoses, but that they would have other things in common like pain and having to take the same medication. That sounds pretty bad, but it would be nice for her to meet someone that she could identify in that way. I also hope that she has other things in common with people she meets there. Things like Twilight, Harry Potter, Miley Cyrus and sparkly eyeshadow. We'll see how it goes.

Just yesterday, her doctor called me to increase her Prednisone and double up on her pain medication in order to get the polychondritis under control and to ease her pain. We seriously hate the Prednisone part, but reducing that pain sounds great. Her stomach has been doing much better, hopefully that will be okay still with the increase in her steroids. Next week she sees another specialist for her ears. The ringing has gotten worse and they need to check the structure to make sure that her ears aren't being affected by the polychondrits.

Goodness, it seems that there's a whole lot going on in her body. I still know that she was wonderfully made and that her Creator designed a perfect her. Knowing that doesn't make me able to accept her pain. Having faith that God is in control doesn't mean that I can sit around and just wait for things to happen. It means seeking Him and asking for doors to be opened for the best care possible. My prayer is that she lives a big full life that doesn't include pain. That's all I want.

Summer

Good grief, I haven't written in a long time. To be honest, the summer came and went with not much fun or excitement. I had big plans of fun outings to take my kids on but nothing much came of them. Guess having a kid that doesn't feel great can do that if you aren't careful. I wasn't careful that way this summer. Not one trip to the beach, not one fun family getaway. We did make it to see the specialist in Atlanta. That was a blessing in itself, but not fun.

The doctor in Atlanta suggested that we get her dosage of Prednisone down and that would help her cope with the pain as well as reduce her risk of harmful side effects. We were able to get her from 15 mg. per day to 8 mg. per day before things started to get bad again. The doctor thought that reducing that drug would also tell us whether she does indeed have the Relapsing Polychondritis or not. Unfortunately, as of this week, she's back on the high dosage of Prednisone and that diagnosis has been confirmed. Her nose is inflamed again, her joints are achy, she has a headache. Her stomach is bothering her from all the meds. She isn't sleeping. I hate this.

Probably for reasons of a hormonal nature, I've not coped with this news well. Not at all. My faith is still strong, but I'm not being comforted right now. Maybe because I'm not in a place to be comforted. My child is hurting and I'm just sad. That's okay for now but I can't stay here long. I know His strength is made perfect in my weakness. I know He's here and cares for us. I know it all but am just in a bit of a low spot. Sometimes the sadness of it all is just overwhelming. It doesn't happen often but when it does...


Good thing it's still hot here. We need to go to the beach.

Just this much.

So it's been a while since I've posted. Things have been difficult, and while writing usually helps me keep things in perspective, it's something I haven't been able to do. During the last six weeks Haley's pain has continued to escalate. She is limited in what pain medication she can take because of stuff she already has to take. We try to comfort her, keeping her calm and semi-distracted because that's all we can do. It's not all we can do, because we pray constantly. That's a lot because I know God still hears our prayers, but it feels like we should be doing much more when prayer for our Mighty God's healing is the most we can do.

Just over a week ago, a wonderful specialist in Atlanta has agreed to see Haley. We beat our heads against walls trying to find a doctor that would see her for the polychondritis and were rejected every time until this doctor. We are praying for him to be healthy, and for him to have wisdom when he sees Haley on July 28th. It was so miraculous for him to see her next month. We waited the entire summer last year for an appointment for her to see a pediatric rheumatologist. This would feel like nothing in comparison if it wasn't for her nose.

Her nose is where this whole polychondritis stuff started. For months, like since at least December, she would frequently complain of pain in her nose. I thought she had a pimples in it or maybe it was a side effect from something she was taking. It did look reddish at times but didn't seem like a big deal at all. When I finally remembered to mention it to her doctor, I quickly knew it was a big deal and that he should have known about it sooner. Last month, he did try to treat the inflammation by tripling her dose of prednisone for two weeks, but that didn't help and the side effects were horrible for her. He then decided that this was more than he could handle and gave us more names to contact. Now, after much (and I mean MUCH) prayer and waiting, she has an appointment with a big time rheumatologist that I believe will figure her out. But right now her nose is still what we refer to as "angry". Reddish, swollen and inflamed. The shape of her nose is changing. She is losing cartilage. We are praying for her cartilage to be healed and for this attack to stop. Now.

Still in all of this God is here. He gives us rest and we have peace in knowing that He is in charge. My heart breaks because my child is in pain but God knows that. There is a purpose in all of this and He still shows himself to be faithful and worthy of our trust. We have been given encouragement from strangers and really amazing friends in surprising ways that are clearly from Him alone. Haley is proof of God's grace being sufficient. We are so blessed.

Lamaze breathing, spiritually speaking

So you've probably noticed it's been forever. If there is a "you". Things have been smoothly going along for the most part. Haley and her brother got "real" cell phones. I say real because they had pay as you go type phones after the washing machine incident where someone proved he wasn't ready for the responsiblity/privilege of having a cell phone. That's about as exciting as things have been . Nice and calm. Haley has had lots of dental work done already this year. Even some cosmetic work for the first time ever. She has been mostly feeling much better. Occasional joint pain but more frequent pain in her nose. Not like sinuses, but her nose itself. It's been reddish, changed shape and seem swollen. I finally remembered to ask her doctor about it. Maybe it's a side effect of Prednisone? Maybe she's allergic to it?

Nope. Her nose is inflamed. More specifically, her cartilage is inflamed. Her ear has been as well. Not often, but she had this bright red swollen spot on her ear a week or so ago. Her doctor examined her and said that he suspects it might be relapsing polychondritis. I know because I wrote it down. He said it's "even rarer than Sjogren's and good luck finding someone that knows enough about it to diagnose it". Of course it's rarer, of course it's hard to diagnose. Of course. He said to start with an ENT. We scheduled her next appointment and left.

By the time we were in the car, my chest felt all tight. The weight of something new was on me already. I had never heard of relapsing polychondritis and had no idea what it was until I called John. Then he Googled it. PSA time: the time to find out about a new diagnosis that your child may or may not have is not when you have to drive an hour or so while trying to digest information that you never wanted to hear. But I was mostly calm and okay to drive. Then the analogy hit me. This is like Lamaze breathing.

When Julia, our oldest was on her way, I took Lamaze classes. Do they still call them that? Anyway, it was about using a focal point to help you focus on staying calm, and using breathing techniques along the way. Basically, it worked for three deliveries, two of them without any medication at all. If I could stay focused and breathe then the pain wouldn't overwhelm me and I would be okay. There would be times that John would lean on the bed and it would shake my focus and I would start to be overcome with pain and panic a little. I delivered three babies without a scream, yell or moan because I was so focused on staying calm.

So I've been trying to practice Lamaze breathing of a spiritual variety. If I am focused on God, and knowing that He is wonderous and all knowing, that He alone has designed my child with a perfect plan, then I have His perfect peace and can be calm. It's really easy to lose focus and feel that same sort of pain and panic overwhelm me but I don't have to. He has given me so much grace and my hope is in Him. He's given me such a gift, to know His power is such a blessing.

We are in the middle of waiting on doctors and really don't know what comes next. The ENT suggested we find a specialist that can diagnose relapsing polychondritis. Yesterday I put it squarely back into the lap of Haley's doctor. I'm expecting him to call but he hasn't. Maybe he's looking for a specialist, maybe he isn't. I'll give him a call tomorrow to see what we do next. But tonight, I'm sleeping. Update to follow

This is about the kids, right?

Friday started a weekend experience for the youth at our church called "Straight up Weekend". Our theme this year was doulos (bondservant in Greek). It was all about the importance of us becoming servants to others in the name of Christ. In order to serve effectively we can't focus on ourselves. There are so many things that can distract us from doing what we should to help others. Most of them can be quickly overcome if we want those obstacles out of the way. But we have to make a choice.

Through the weekend there were six girls in my group. Being a facilitator is sort of like being a youth leader through the weekend, all of the weekend to a very small group. We were able to really talk about and digest the messagess together. They really understood and absorbed what was being given to us this weekend. We had the blessing of getting to work on a service project together. We cleaned the home of a 94 yr. old man who had been up sewing clothing for migrant children most of the night. He showed us the clothing he had been making. Little jumpers, sun suits, shorts and shirts. He was really good at it. It was a blessing to be able help someone that was helping others. I can't go into much detail, but the girls in our group were great girls. We had so much fun together and they were so spiritually awakened by the weekend. They carry heavier burdens than we expect sometimes, but hopefully, they ended the weekend a little lighter. I sure did.

Haley started off the weekend feeling badly. On Friday afternoon she was crying in pain. This weekend she would be staying with a group of her friends and her Bible Fellowship (Sunday School) teacher. She wasn't going to miss it no matter how much pain she was in. Friday, she spent the day under a heating pad and took some extra pain medication. The girl was packed, ready to go and no pain would stop her. We had been praying for weeks that she would be pain free for the weekend. Either she stopped hurting or it didn't matter because she enjoyed the weekend so much. It was a gift to see God's grace help her through so that she could participate and even serve during the weekend. My kids all had a great time and learned so much.

Then there's me. Friday night I arrived at the church in tears, worried about Haley. Starting the weekend off with a distraction wasn't a good thing, my mind needed to be clear and ready to focus on what we were doing. Then Friday night's service started. First, there was great interpretive dance done by some really gifted girls, to the Brandon Heath song "Give Me Your Eyes". Then Matt Papa's band lead us in worship followed by Matt Speaking. We sang about God's mercy and power. At one point during worship, Matt spoke of worshipping God, and it being the end result of everything. It's what God longs for and what I should do more of. Then the message was about taking the focus off ourselves and putting it on God. We involve ourselves in self worship too often. We meaning "I". Without even knowing it. Throughout the evening, little truths kept adding up to a big one. This is big and it has changed me. Taking a weight off me that has been there as long as I can remember. Here goes.

Haley's problems are not something that God has "allowed" to happen. Haley's problems are part of God's plan. She came to us exactly the way God wanted her to be. The one thing that has been consistent no matter how painful or difficult things have been for Haley is God's faithfulness. He has shown His power, His mercy and His love for us in every situation, in every trial He has been faithful. He has been glorified in our darkest times. Haley is walking, talking evidence of God's care and kindness. I've always thought that there was something for me to learn, some growing that I needed to do. That the reason my daughter has all this stuff was about me needing to do something. Finally, it's not about me, or us. It's about God and His plan to demonstrate how wonderous He is. I think that's the plan. Haley isn't a victim of everything going on in her body. She is fearfully and wonderously made just the way she should be. It has taken forever for me to get it.

Well it's been a while...

This blog has been a bit neglected. It's pretty much just been here as a dumping ground, and I don't seem to visit unless something new is happening with Haley. Pretty much it's been more of the same for her. The good news is that the medication she has been on is still working. She sees her rheumatologist next week and he'll be letting us know what will happen next in that respect. Hopefully, he's found a few other pediatric Sjogren's patients somewhere that he could get a little more treatment information from. The thought of her on Prednisone for too much longer. It's pretty scary stuff. We'll see.

Yesterday was a visit to Shriner's Hospital. You all know (if there is even a "you"?) that I love the Shriners, they took good care of her again. Her curves have increased more than they'd like to see. Considering how little she's worn that brace, it's understandable. Everyone has a breaking point, and that brace has been hers. For now, they recommended water physical therapy. With her also having the Sjogren's, Ehlers Danlos syndrome and hypotonia (low muscle tone) the therapists there thought water therapy was the safest. So I'm looking. Haley's just glad she doesn't have to wear the brace for now.

Our next stop was to see Dr. L (aka, world's best dentist!) because I noticed a new cavity last week. Actually she had two. That's how fast things go badly in her mouth. Her amazing dentist fixed everything with the least pain and we were off. The dentist had printed me out an article about the oral issues of Sjogren's patients. I started to read it in the office but thankfully, finished it at home. It contained helpful information but also information that shook me pretty good. I've read this before but choose not to acknowledge it. Patients with Sjogren's syndrome have a "twenty-fold" increased chance of developing lymphoma. Not fun to read about your child. The patients studied are generally 40-60 years old, so no one knows what to expect with patients Haley's age. Again, I choose not to think about it. But for some reason, the thought has been creeping in more than I'd like it to. God has been so good to us, and He's given me the most peace that I think any parent of a "special edition" could have. I read Luke 12 today. Verses 22-26 really helped me. Wasting time worrying won't add an hour to anyone's life. That's a good lesson for me. My trust is in the Lord.

Update and Blessings

Things have been really good around here lately. We are getting ready to celebrate Christmas and have been enjoying the festivities that pop up along the way. The kids are all doing well. Haley's medication is still doing the job. Now the challenge is to get her back into her sleeping brace on a more regular basis. She had an echocardiogram on Monday. Her heart looks normal, with the exception of a right arching aorta? Apparently it should be arching to the left. We go back to the neurologist on the 29th to review the results, so we should learn more about it then. Hopefully.

Today was the day that our oldest daughter Julia's Bible Fellowship department went to be a blessing to a needy family. She invited me to come at the last minute. We don't often get to do something like that together, so I went with her. They have an open invitation to families every year. This year I would be the only family member to come this time. At first I felt a bit like a fifth wheel but then we arrived at the family's home in Wimauma.

The sweet family that we visited had six children there with them, in a tidy one bedroom apartment. Their adult daughter, Margerita was there too, in the bedroom in a hospital bed. She was beautiful. Blind and bedridden, she has never seen her own eight year old daughter's face. Margerita was suffering the effects of MS and was a sick lady. Did I tell you how beautiful she was? I told her so (through a translator) and told her that I would be praying for her. Her older sister sat in the room with her while everyone else tried to squeeze into the family's main room. I stood near a familiar looking wheelchair that was tucked behind an open door. The family spoke Spanish primarily, and we were blessed to have missionaries to Mexico join us for the day. The kids gave the family members the gifts they had chosen for them, decorated a tree for them, read some scripture in Spanish and sang with them. Then it was time for us to leave and we asked if there was any special needs that we could pray for. They only had one prayer request, for their sick daughter to be well.

Sound familiar? In that moment, I saw myself standing in their shoes, full of worry over their sick girl. My hear broke for them, knowing their pain so well. We all held hands and prayed for the family, especially for their Margerita. After we prayed for them, the father wanted to pray too. He lifted his hands and prayed to God with words I couldn't understand but with a spirit that I knew well. That was a once in a lifetime experience. I promised the parents to pray for their daughter. They hugged and kissed me and we left. Back on the bus I couldn't speak without crying, in front of a bunch of eleventh graders that probably didn't notice. Julia's invitation was to go and be a blessing. The blessings were mine in the end, along with the reminder to count them more often. God is good.

Please pray for Margerita and her family.