All posts by Little M.S. Runner

Forty-something, married with two kids and two dogs. Trying hard to live every day to the fullest with multiple sclerosis, impaired vision, and deafness. Couldn't make it without my Savior, Jesus Christ.
God speaks, Miracles do happen, Multiple Sclerosis

Healing the blind

Leave a comment

Matthew 9:27-31: “And as Jesus passed on from there, two blind men followed him, crying aloud, ‘Have mercy on us, Son of David.’ When he entered the house, the blind men came to him, and Jesus said to them, ‘Do you believe that I am able to do this?’ They said to him, ‘Yes, Lord.’ Then he touched their eyes, saying, ‘According to your faith be it done to you.’ And their eyes were opened. And Jesus sternly warned them, ‘See that no one knows about it.’ But they went away and spread his fame through all that district.”

I read a lot of these stories in the Bible, the stories of Jesus or his disciples healing the sick. And I have to be honest, it especially pains me to read the stories of the blind being healed. In some ways it’s jealousy, that that type of healing hasn’t happened for me (yet??), but in other ways it serves as a good reminder that Jesus CAN heal me. Believe me, I know it’s entirely possible (if not more likely) that complete healing may not come until I am ushered through the pearly gates. But that doesn’t seem to provide much reassurance. I have moments of peace about my crummy vision, and even my hearing loss, but they are just that: Moments. Some last longer than others, and I am thankful for those. Those are the times I am either really focused on connecting with God, or focused on the people I am with. Sometimes it’s both.

Today I am kind of in the middle. A little melancholy, a little at peace, but very thankful to be alive. Someday my day will come, and my eyes will be opened. Here’s to the hope that it will come sooner rather than later.

Cochlear implant, Decluttering, Kids, Multiple Sclerosis

Grandma Deb

1 Comment

I had a heck of a week last week. All good. My mom was visiting from Oklahoma, and it was wonderful to spend time with her. On normal days we Skype, so it was refreshing to have real interaction. She came with me to my audiologist appointment, and then we went shopping and had lunch afterwards. That was Monday, when the kids are at daycare. We had the kids home the rest of the week, which changed everything. The kids had a great time with Grandma Deb, and she took them to Jumpin’ Jax (a local bounce-house playground type thing). She also got to see Luke play baseball, and we did some shopping for yarn so I can make afghans for the kids. She helped me sort through Natalie’s clothes for the items that no longer fit, and then took us to Goodwill to drop off a whole trunk load of stuff we no longer wanted.

So while we got a lot of work done around the house, we also had a lot of fun as well. We never did get to decluttering that damn hall closet. Oh well. I’ll get it handled eventually.

I have always been close with my mom, so it makes me happy to see the kids connecting with her so well. They each have a lot of her character in them, and it’s even more apparent to me when she’s around. Natalie has her artistic streak, loving drawing, coloring, and dancing; Luke has her creative problem solving abilities.

When we first planned this visit we expected that I would need more help, but I think we were both surprised at how well I was doing, especially with the kids. I was able to show Mom how well I can hear the kids now that I’m getting used to the cochlear implant, and also how well the kids were adjusting to it. I will always be making adjustments, but we’re headed in the right direction.

By the end of the week, I was pretty fatigued. Partly because of all the work we did, but partly because I was due for my monthly Tysabri infusion. It’s the medicine I take to manage and hopefully slow down the progression of multiple sclerosis. I noticed a few months back that I get more and more tired leading up to the next infusion. So, three weeks of fairly normal energy levels, and one week of rapidly progressing fatigue. It’s good that I can recognize this, so I’m not feeling hopelessly frustrated to be so doggone tired for no good reason. It’s unfortunate that Mom happened to be here on that fourth week of fatigue, but in a way I’m grateful, because she was happy to help and quick to recognize when I needed to rest. And, being my mother, she is not shy about telling me to take a nap when I need it.

All in all, it was a great week. Summer is flying by, and the kids will be back to school in no time. We plan to continue to enjoy every moment we are given, and thank God for all the blessings. Carpe diem!

Kids

R.I.P. Caramel Lollipop

1 Comment

Oh, my daughter. Such a tender heart, with emotions very close to the surface. She cries easily, and shows very real emotion. Most times it makes me feel sad too, to see her hurting.

Not this time.

This time she was sad because the caramel lollipop she was eating was now gone. “It was so precious, I didn’t want to eat it!” And yet she did.

Let’s pause for a moment of silence to remember and honor the precious caramel lollipop.

WIN_20140725_111322

Multiple Sclerosis

Face plant

Leave a comment

My mom has come to visit! My house was already a frenzy, with grandparents returning my kids from the fair and a friend visiting to chat. When my mom walked through the doorway I was so excited to see her I rushed over to hug her and totally lost (misplaced) my balance and made a good face plant on the hardwood floor with my teeth. I was so happy, I was crying and laughing all while holding my mouth to check for blood. I think somewhere in the middle of all that I had knocked down my daughter too, so while I was lying face-down on the floor, I was looking and reaching over to make sure she was okay. She was fine. I was fine. The whole thing was hilarious.

Damn MS. I really need to remember my body isn’t cut out for running..

God speaks

Perspective

3 Comments

If you’ve heard the story of the Israelites wandering in the desert for 40 years, you probably remember it as a punishment of sorts. Those stubborn Israelites, not trusting God, and suffering for decades because of it. We often sympathize with the Israelites. That’s how the story is generally used, as an example and admonishment to not be like the Israelites.

When I read this passage today I noticed it was told from the other side of the story. From God’s perspective. It made me chuckle.

Acts 13:17-18 – “The God of this people Israel chose our fathers and made the people great during their stay in the land of Egypt, and with uplifted arm he led them out of it. And for about forty years he put up with them in the wilderness.”

1) “During their stay” makes it sound like a vacation, doesn’t it? I have no deep insight here, I just thought it was funny.

2) God “put up with them”. Yes, because I’m sure they did not go 40 years without complaining. If you are a parent, you undoubtedly know what it’s like to put up with an ungrateful child complaining that they aren’t getting what they want or need (according to their childish understanding). It’s aggravating at best. It’s frustrating because there isn’t much you can do, other than let them work through it on their own, and hope that they eventually come to a point where they realize and become grateful for what they do have.

Sadly, some kids don’t ever get there, to that place of gratitude. Or they get there, and they forget. I have lost count of how many times I’ve been there and forgotten. I’m kind of getting back there now, again. I don’t want to be that child who God has to put up with. I want to be thankful. I want to see the streams in the desert. I want to make the most of life during my stay. I am in the desert, but God is with me here, and holds my future. For that, I am grateful.

God speaks

Attitude of Gratitude

Leave a comment

Don’t ask me how I’m doing.

Because I know you were about to, weren’t you?

Right at this moment I am good. I have my coffee and my yogurt (w/ granola and strawberries, of course). I am walking and healthy-ish, my kids are here with me. We have the whole day ahead of us. Natalie’s bedroom was destroyed while playing with her friends yesterday, so today’s challenge is getting her to help clean it up. Good luck, Momma.

[Let me pause right here and tell you about the coffee. A friend was visiting yesterday and she told me about someone who puts cinnamon in their coffee by putting it right in the grounds. What a fabulous idea! So I tried it this morning and it is simply divine. The flavor blends right in. Yummy!]

Today I read about Job, who was stripped of his wealth, lost his family and his health, and yet he still praised God. People thought his affliction was a result of his sins, but the Bible tells us that it was not. It just was. And his story has been both a comfort and a lesson to hurting people ever since.

I have often asked God why He allowed me to lose my hearing and eyesight, and I have yet to get a clear answer. I wonder if Job struggled with that same question, Why?. And if he did, how did he come to a place of peace? This is where I am. I don’t pretend to know why all this happened to me, but there are some things I do know, and that’s what I need to focus on.

What do I know? Well, for starters, I have been reunited with my children and my friends and countless others. While I am “stuck” at home I have the opportunity to build into my children’s lives, shape their character, learn who they are. Secondly, our “wealth” has been protected through all of this. And third, I still have sufficient eyesight to take care of myself and do most things to care for my family (like cooking, laundry, and cleaning). The bonus third is that I can still read books with my Kindle.

I have to thank God for these things and give Him ALL the praise, because tomorrow one or all may not be true. That’s not to sound pessimistic, but realistic. We know from hearing others’ stories that life can change in an instant. In the blink of an eye, it can all be gone. So you (yes you, reading this post) must recognize all that you have that is good and true and then praise the pants off the Lord for giving it to you. An attitude of gratitude starts with a simple thank you, but must be continually fed and pruned. Say thank you and mean it. Over and over and over again.

Housekeeping, Kids
Leave a comment

Somehow I went from having no worries about tomorrow, to worrying about today. Argh. Sometimes I drive myself crazy.

I really want to teach my kids good habits, like being polite and cleaning up after themselves. But in order to do that, I need to 1) Be consistent and 2) Remember I’m the one in charge. I think my son knows that I enjoy having him home and that I want to give him good things, and he sometimes uses that to his advantage. And my daughter is just young and strong-willed.

So tomorrow we are starting a new day, with a new resolve to be consistent with my expectations and remember that I have the final say. No snacking on junk unless we have eaten a good, healthy meal. No “screen” time until our latest mess is cleaned up. And maybe others, but we’ll start small so we can focus on making those things habit.

What do you think? Any suggestions? Do your kids struggle with manners or keeping their rooms and other play areas tidy? I am all ears, so if you have any tips or suggestions on this subject, please share!

 

God speaks, Housekeeping

No worries

Leave a comment

No worries! I tend to say this often, though mostly to convince myself that there is nothing to worry about. Or rather, remind myself. I have a habit of stressing about things like meal planning and housecleaning and scheduling. It drives me nuts. What should we eat for dinners? When will I have time to clean the bathrooms? What is everyone doing this week? I live for my Cozi calendar.

In the midst of all this normal, daily stuff, I must remember what Jesus said (found in the book of Matthew, chapter 6): “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself.”

See? I don’t have to worry about tomorrow, or the next day, or the day after that. Tomorrow will worry about itself, and we aren’t even there yet. And when we do get there, it won’t be tomorrow anymore. It will be today, and today is easy. Yesterday, today was tomorrow, and I was stressing a little about it, but now it seems so silly. Because I’m here now, and it’s good.

One. Day. At. A. Time.

Today, we can do. We got this!

Multiple Sclerosis

Mourning independence lost

3 Comments

I think I’m finally starting to let go of my “need” for independence. I’ve always been a do-er, a person who could take care of things herself, and had a resistance to asking for help.

That doesn’t work for me anymore.

I hate, hate, hate to feel like I’m a burden to anyone, and I hate having to rely on others. Last fall, I was a burden, but the people who bore that burden loved me just the same and carried it lightly. For that I am grateful.

I have come a long way since then, and have returned to some sense of normalcy, where I feel like I am contributing something of value to my family. I’m feeling useful again, and it’s nice. However, there are still things I cannot do no matter how hard I try.

I cannot drive a car. This means I can’t go get the groceries for the family, or drive the kids to and from school, or to friends’ houses for playdates. And that drives me crazy some days. That there is no option. It just is what it is.

How do you deal with something you cannot change? You could fight it, but what good would that do? No amount of fighting will change my vision. It is 100% out of my control. And I suppose I could cry about it, but I’ve shed so many tears over the past year, I think I’ve run out for awhile (Not to mention, crying doesn’t change the facts either).

So what option is left? Acceptance. Ah, now we’re getting somewhere. But what does acceptance of this low vision look like? I think it is this: you do what you can, and delegate the rest. So that is what I’m learning, to delegate. What I’m learning through the process is that people like to feel needed, and are more than willing to help. They seem to know I’m not just a lazy freeloader (most of the time, anyway) and are eager to help. It seems the bonus out of helping is that they get to spend time with me, and our friendships grow as a result. That sounds a little selfish when I say it like that, but truly, people like me! I’m funny! And, I will buy you coffee. And chocolate. And fill up your tank with gas.

That is it. Accept what is real and true with humor and grace. Laugh a little, be kind to others, and for the love of Nemo, just keep swimming…

 

Cochlear implant, Deafness, Kids

Re-learning to talk to Momma

3 Comments

I don’t think I’ve mentioned it, but last year, very shortly after I lost my hearing, I also got very sick and was struggling to stay awake. I guess you could say I had “checked out”. In addition to falling asleep all the time, I couldn’t answer simple questions, and I was losing touch with everyone and everything. It was very scary. One thing that grieved me the most at the time was the way my children were affected. In particular, my daughter. She was 3 years old then, and had no idea how to communicate with me. She was lost, seeing me lost, and she just sort of gave up on me. Once I got better and regained my cognition, it broke my heart to discover the major disconnect between us.

My mom had flown in to stay with me as I recovered, and it took her two seconds to see what had happened with Natalie. She didn’t waste any time teaching Natalie how to communicate with me, telling her to make sure she looks at me when she speaks, and to speak slowly, and use hand gestures and simple ASL. Natalie soaked it up like a sponge. As she saw me respond to her, she opened right back up. What my mom did was such a gift. When I thought I had lost my daughter, she found a way to give her back to me.

And now? Now, as I’m learning to hear again with this cochlear implant, I am having to teach my kids all over again how to *talk* to me. Audibly! As it turns out, my daughter had a habit of mouthing her words to me, with no sound, so I’m having to continually remind her to use sound. And as I remind her throughout the day, she gets better and better.  Just in the past couple of days she is really picking up on the “normal talking to Momma” thing, and I am loving hearing what she has to say. She has a fabulous, sweet, funny personality. And I sat her down after her bath tonight and told her so. I told her that I had really missed talking with her, and I am so thankful for my “new ear” so that I can hear what she has to say, and I can hear her giggle when she makes a joke, and of course I started to cry as I was telling her this. But this girl, she understands “happy cries”, and she was not shaken or scared. In fact, she threw off her bath towel and stretched her arms out to give me the best hug ever. And we held each other while I silently sobbed on her shoulder.  

I’ve had these sorts of moments with Luke as well, but I have a different sort of connection with him. Luke and Natalie are so unique, yet both possess the same kindness and understanding. Luke has done very well with the changes my implant has brought. He still likes to use ASL to ask to play video games, but I don’t correct him. I think he does it both out of habit and for fun. When he makes a loud noise or laughs, he knows I can hear him so he looks over at me and smiles his big (toothless) grin, seeing that I’ve heard, and we just stare at each other with sparkles in our eyes and joy in our hearts.

I am starting to really experience what one of my new cochlear implanted friends always signs her messages with… with CI joy,