Update in September 2019

Life has been very busy, so updates have been sparse.

Mum is still battling cancer, and recently had a short fight with neutropenia (dangerously low white blood cell count) that put her chemo on hold for a week or so. They did a CT scan and found no new cancer cells in her abdomen, so praise the LORD. She is going back on chemo now, and we hope she'll be through in December. Please keep her in your prayers.

Dad has been struggling some more MS issues, though I am not sure how much I'm at liberty to say. Suffice to say, he needs prayers as well.

As for myself, I have found an asthma medication that has helped me immensely and am no longer requiring a mask, and have only used my inhaler once in the past month. Praise GOD for HIS goodness in providing me with a medication that helps!  We still don't know what's wrong with me as far as stiff and painful muscles during cold weather, and I've also been having vision issues. I have no real answers to give right now on these issues.

Other extended family members are dealing with health issues as well, one with an undiagnosed autoimmune disorder, another with a severe infection that has put them in the hospital, and another with an upcoming surgery to repair a broken joint that has already had multiple corrective surgeries. Some of these family members are older and frail and need your prayers.

I will be very honest with you and state that right now, my world feels like it's on fire, and like I am losing almost everything. I feel very much overwhelmed, even to the point of breaking. This is hard. Harder than anything I have ever been through in my entire life. 

And yet, as I feel like my world is burning, the more I gaze at GOD, the more I find that, even in this fire, there is hope. My world isn't entirely in flames. HE stays the same. HE is unchanging. HE will never die or leave me. HE will never abandon me. The outcome is sure; HE will reign, now and forever.

My walk with HIM is far from perfect, yet while I gaze at HIM, I find I cannot despair. How can I? HE is my hope. Not just the hope of Heaven at the end of this life, but HE HIMSELF is my hope. The more HE fills my mind, this unchanging, faithful GOD, the less I can despair. The more HE fills my thoughts, the more I think on HIS majesty, HIS glory, HIS power, the mystery of this incomprehensible GOD WHO has condescended to let us know HIM in part, WHO reconciled us to HIMSELF by the blood of HIS SON, the more I find I cannot despair for I have HIM. I cannot even begin to explain this supernatural hope in the midst of this storm. 

Could it be that this time of testing, of grieving, and even possible loss, could be to reveal to us more fully the complete sufficiency of GOD for all our needs until we truly find in HIM our all in all? Could it be that the purpose of this storm in our lives is to take from us all we cling to, until we find ourselves only with HIM, and find that HE is more than enough? Is this suffering what it takes to finally know GOD as intimately as we long to know HIM? Could this firey trial be what it takes to purify us to draw ever closer to HIM? To strip away the false idols, the things we cling to in place of HIM, so that HE might give us HIMSELF? 

I believe, even now, I can honestly say that if it is the will of GOD to draw us to HIMSELF through suffering, it is worth it. It is worth it to lose all that I have if it gives me HIM. It is worth it to lose all that I hold dear, if HE will give me HIMSELF in place of it. I am learning I can give up any sense of having my family, trusting them completely into HIS hands, even into death, because HE is wholly good and can be trusted. Have I learned this perfectly? No. It is easier to say than to believe minute by minute, hour by hour, day by day. But I am learning this. And I pray that I learn it well, and never forget it. 

Update June 2019

It has been a VERY long time since I posted a blog update on my life. It's been a crazy year, and I suppose it's time to bring everybody up to speed. So, here are what's happened since I last posted.

My aunt, who had been battling cancer for several years moved in with us in 2017. Sadly, she passed away in December of 2018. We held a memorial for her at our church with friends and family in attendance. She was brave and battled her cancer for many years, and even until the very last days, she was a trooper. She was one of the most courageous women I've ever met. I didn't know her long, but she was an unforgettable woman. She will be remembered for a very very long time. 

Mum was diagnosed in May of this year with cancer, and has had two surgeries to remove cancerous growths in her abdomen. They have found four of her lymph nodes are cancerous as well, so she will have to undergo chemo after she's recovered from surgery. The doctors are planning to completely eradicate the cancer, so the prognosis for her is good, but she has a long road ahead. Her cheerful attitude makes her a delight to be around, and I wish I could be half as cheerful as she is. She spent a great deal of time in the hospital recovering from the surgeries as well as dealing with surgery complications, so we are very glad she is back home and recovering well. We are so grateful to GOD that HE has undeniably guided this process. HIS hand has been in it from the beginning, and we trust that HE will see it to the end. 

Dad's MS seems to be at a halt at this point, with little to no progression of the disease, so it may be done progressing. Autoimmune things that start before middle age just sometimes stop for no reason when people reach their mid 50s-early 60s. This seems to be what is happening with Dad, and we are SO grateful for this. He has been able to go off some dangerous medications that were holding the MS in check, he's been able to decrease pain meds, and he's having many more good days than bad. We praise GOD for this reprieve. 

I have been diagnosed with non-epileptic seizures, which is why I shake so much. Apparently, I have not processed stress in an appropriate way, and it has caused stressed based seizures, so I have been learning to deal with my stress in a more appropriate way. Just in case anyone was wondering, pretending you're not stressed out is not an appropriate way to deal with stress. That's why I shake. Don't follow my example, use me as a warning. Deal with your stress. Pray, journal, talk about it, give it to the LORD, but don't pretend it doesn't exist. Believe me, the consequences of not dealing with it are far more unpleasant than actually writing out your problems, praying about them, and facing them. Running from them gives them a chance to catch up to you in VERY unpleasant ways. 

As always, asthma and allergies continue to be a problem. I am still searching for a medication that clears up my lungs enough to walk around during the summer without a mask. Hopefully I'll have something in the next month that works. It'd be nice to be able to go outside and pick flowers or take photos again. I've actually begun dreaming at night about going out and picking flowers and hang drying them. I REALLY miss going outside in the summer. I used to be outside all the time, walking to the library, or going places on my bike. Being stuck inside all spring and summer is...difficult. The world is so beautiful, and I feel like I'm missing it. At least I have my autumns. 

Wishes...do come true sometimes.

It's been over a year since I last posted, and it's been a tough year. A lot of things have happened in the past year or so, some good, some really hard. I've been finding how faithful GOD is in the hard times, and how sweet HIS goodness is in the good times.

I look back at the past post I made, of wanting others to know sign language, longing for others to learn it just so I could feel like family. Feeling so alone and struggling hard to understand. It was a sad and lonely post from a sad and lonely girl.

Tonight, though, was one of the sweetest moments of my life, aside from being saved. Tonight, I felt precious and valued by my church family, like I wasn't just another face in a crowd, but someone they cared about.

My church had a Christmas play that some of the young ladies and the kids put on. It was lovely, with beautiful music, wonderful lyrics, Scripture, and just a lovely evening. I got to sit up in the front row with my Pastor and his wife in some reserved seats. I thought they were reserved for some of the kids to be able to sit down for different parts, or the Pastor's family. Oddly enough, no kids really sat down in the row, aside from one girl, who sat right next to me.

The first song had a little bit of sign language with it. Not fluent sign at all, just simple things that can be taught to a large group of kids who have to learn a LOT of songs. (SO...MANY...SONGS. I'm AMAZED!) I started getting teary, because it was so sweet, but the song was over quickly, so I managed not to bawl.

It was really cute, and I kept waiting for more sign language. Towards the end, I kinda stopped waiting for sign language because I figured they'd just not been able to teach any more signs to the kids on top of all the songs they'd learned. It was still pretty cool!

There were a few songs we had to sing as a congregation, and since I was in the middle of a group, I was stuck holding the lyrics for three other people, and I couldn't sign. Sooo, I had to sing, which I am REALLY not comfortable doing in a large group since, y'know, I'm half Deaf. I think I warbled off key quite a few times. Oh, my poor Pastor and his wife...they were right next to me and had to hear me.

The last song, "Silent Night," we all stood up to sing, and as I looked up, the girl sitting next to me, and three other girls, suddenly moved to the part of the stage that was directly in front of me. And as I watched, all four of them started signing the first verse to "Silent Night" in perfect ASL.

I was...dumbstruck. I cried. I kid you not. I BAWLED. I could not stop crying for the song. These amazing, talented young ladies just blew me away with their kindness in making me feel welcome and a part of our church family.

I felt so valued, so appreciated, so loved, so PRECIOUS! I felt like I was with family. I...I'm still crying right now just thinking of it. I felt like there is a place just for me in my church. I don't have to leave my church if I go fully Deaf. I don't need to rely on an interpreter. I have friends who are learning sign language in my church, and who make me feel like I'm precious to them. Like my wants, my needs, matter.

Ladies and gentlemen, I do not think I could ever find a more amazing church than the one I have.

 Oh, and those reserved seats? The ones up in the front row? They were for me and the other Deaf gal at my church. They were so we could hear better, lip read more clearly, and see the last song signed just for us. They were for us, so we could be a part of it, too.

I wish you knew ASL

Did you ever have something that you wanted so much that it almost hurts? And as much as you want it, you're afraid to hope for it because it will probably never happen? I do.

You all know that I'm culturally Deaf, and physically quite hard of hearing. Because of that, conversations with people are difficult and often stressful. Especially in a crowd, it makes it so difficult. And the louder the crowd gets, the more stressed out I am in conversations, until the point where I can no longer hear what the other people are saying.

Sometimes, I let myself dream of what it'd be like for someone to learn ASL just for me. Just so I don't have to struggle. Sometimes I let myself hope that maybe, one day, I could walk into church and my friends start signing with me, so I don't have to struggle to understand them. And every time I do, I get tears in my eyes, because I don't think that it will ever happen.

People think, because I can talk, that just talking with me includes me. Oh, I wish they knew how much I long to talk with them in ASL! It's so hard to use English when it's loud! People think I cope really well, but they don't know how much I have to let slide, or how much guessing I have to do to carry on a conversation. It's like trying to figure out a code in 5 seconds or less, and every time they speak, I have to figure out a new code, and then respond appropriately. I have gotten very good at the 'smile and nod' response.

 I often wonder how different my relationships would be if I could simply walk up to anyone in church and carry on a conversation. Instead, I have to pick and choose who I talk to based on who I can hear. The group of people in church who I know well is very small, because there are so few people I can hear or speak with easily, and there are very few times where I can speak to them in a quiet environment.

Recently I made the mistake of introducing myself to the Pastor's niece (whose dad is also an elder), thinking she was new to the church, and I wanted to make her feel welcome. Imagine my embarrassment when I realized who she was! And it was entirely because I had never spoken with her because she too quiet for me to hear easily.

 Honestly, I wish everyone knew ASL. But I really wish my friends and family knew it. I miss so much of their lives and of what's important to them, simply because I miss what they're saying.

If someone learned ASL for me, I think I'd cry. You have no idea how much I want that.

Milepost: Officially Having Mild Hearing Loss

I just got back from my audiologist and it's now properly official; I have mild hearing loss on my right side. That's over the space of about 7 years going from normal hearing (actually, a bit better than normal hearing) on my right side, to now having mild hearing loss. So it is confirmed again, I do seem to be slowly, but progressively, going deaf on my right side.

I'm not scared. I expected this. The truth is, losing sound doesn't scare me or grieve me. Sound is unimportant, but people...people you can't replace. And that is why not being able to hear as much sometimes makes me sad, since so many people I love don't sign. It means that relationships where I have to rely on my ears will probably be grow to be more difficult. That is what makes this hard.

It's watching my dad, who can't learn to sign because of his MS, feel like he is going to lose talking with me because one day I might not be able to hear him. It's watching my Mum's rheumatoid and osteoarthritis take its toll on her hands, and realizing that, by the time I need her to sign all the time to me, her hands might be too damaged for her to be able to sign. It's knowing that neither of my grandparents will ever have the ability to sign because of how bad their hands are. It's realizing that the majority of my precious church family, who mean so much to me, don't know ASL, and realizing that it will likely get harder and harder to talk with them, the more my hearing goes. I don't care about sound. Most sound is a nuisance to me. But the people I love...that's where it hurts.

My audiologist told me that if I want to get better help from my hearing aids, I might need to buy new ones. I only got the ones I have 4 years ago, and had the internal parts in them replaced about a year ago. Do hearing aids wear out that fast? I can't afford to buy $3,500+ hearing aids every 4 years. That's EXPENSIVE. And insurance companies only typically help once with hearing aids, and sometimes not even that. And even if they did help, hearing aids don't ever fully fix the problem; they only make things louder, not clearer. No machine can ever replicate the amazing design GOD has put into our ears.

Do I hate my deafness? No. I do like the quiet. It is very peaceful, and it is a refreshing hide away from our crazy, loud, busy world. I go about most of my day with my hearing aids out, and I like it. I do not grieve my deafness then, but I embrace it. It is peaceful. It is how GOD has made me.

But then there are the moments where I'm surrounded by my hearing church family and I can't hear them. And in the crowd of people I love, I feel so lonely because I can't hear, and then I hate my deafness. I hate that more and more I can be talking to someone and I realize I'm seeing their mouth moving, but I literally hear nothing they're saying. And I hate that it's not even scaring me any more, because it's becoming common place. And that is when deafness is so hard, and when I need the most grace from those who love me. Because that's when I am at my lowest.

GOD is Gracious to me

I was just thinking tonight how gracious GOD has been to me  as I seem to be slowly losing my hearing on my one good side. HE has been so kind to me in my deafness.

Instead of letting me go suddenly deaf, hearing nothing in an instant, HE has slowly let me grow accustomed to my hearing loss. My hearing is fading so slowly that we can only see it over the space of 6 years. What a gracious thing that is from GOD!

Think of it. What if I'd gone from being fully hearing in one ear, to being completely deaf in that ear in an instant? Can you imagine the shock? The fear? It was scary enough realizing I was losing my hearing slowly in my one hearing ear, can you imagine the terror if I suddenly had no communication with my family other than writing? Some people DO go deaf that quickly, from sickness or a sudden blow to the head. That could have been me!

Instead, GOD has been so good to me! HE's letting this happen slowly. I have time to adjust, time to get comfortable for it. I have time to prepare for increasing hearing loss. I have had time to learn ASL so that I can communicate when I can't hear what people are saying. I have had time to tell my family what is going on and to discuss plans for how to communicate with me in the future! I have had time to start making ties to the Deaf community and gain support in that community! There have been so many things I am able to do in this time GOD is giving me!

GOD is so gracious! How many people get this chance? And how many get the chance to ease into it, so that the changes are gradual and easier to get used to?  It's a blessing from GOD!

Isle of hope, Isle of ears...

So, I mishear songs. A LOT! And sometimes, it's hilarious. Though not so much when I mishear hymns. (I regularly accidentally destroy hymns for my mother by saying the misheard words, which makes her laugh.)

However, there was one song that I really liked growing up that the second verse made ABSOLUTELY NO SENSE to me; and it's from "Isle of Hope, Isle of Tears."

Here are the PROPER lyrics;

In a little bag she carried all her past and history
And her dreams for the future in the land of liberty
and courage is the passport
When your old world disappears
But there's no future in the past
When you're 15 years.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

Kinda sad, I know. But lovely song. I tried finding a good version with lyrics posted on youtube, but no luck. Anyhow, my mishearing.

My mistake was in the first line, "In a little bag she carried all her past and history..." Now, see, I heard it as, "In her little pachydermy she carried all her past and history..." And I always wondered why she had a tiny elephant that held all her things. Was it a tiny elephant purse? Or was it a mini elephant that held her things in it's trunk? It never made sense to me.

What funny lyrics have you misheard?