Happy 11th Birthday - October 6, 2015

It was a good birthday this year, we ended up doing something special everyday for Kevin the week of his birthday. We originally had made plans to go to a kiddie amusement park with Jon’s brother and family on Saturday before his birthday but the weather was rainy and cold. So we decided to meet Friday at Preston’s Hope a disability friendly playground. Kevin and his 2 year old cousin had a lot of fun on the slides while we were there. Jon and Uncle Ron met us after work and we all got a bite to eat together. It was a lazy weekend with some of us ending, fighting, and beginning a cold. On Monday I didn’t feel good so we got extra snuggle time. On Tuesday, Kevin’s birthday, we had our appointment with Dr. Nemeh (more about that in next post). Wednesday is Grandma day and we went to the mall (Kevin’s favorite place to walk around). On Thursday we went to Mustard Seed Market (another Kevin favorite) and then drove through Sand Run park on the way home with the beautiful colors of fall. On Friday we went to the children’s Mass at our church. And on Saturday we had a fun family day by driving through Amish Country and ended the day with dinner with our friends.  

Kevin was happy, loved, and felt special on this birthday. Some favorites that made him smile and get very excited were: a birthday music video featuring his 5 cousins, a birthday greeting video from Carrie & Daniel, a FaceTime chat with Uncle Steve and family, a fun musical dog in a box that plays a birthday song (that he plays over and over and over again), TWO Olaf music birthday cards (that he plays over and over and over again), a new OSU t-shirt (that is an X-Lg and fits!!!), a phone call from Great Grandma, homemade birthday pictures, and lots and lots of birthday cards to open, and even some spending money to use on a rainy day. Thank you family and friends for making it special and knowing what makes Kevin happy - music and YOU!

Dr. Nemeh - October 6, 2015

In August, when we were at our last appointment with Dr. Nemeh and scheduling the next appointment they offered October 6 and I immediately said that date was Kevin’s birthday. Mrs. Nemeh offered another date and I said no, I couldn’t think of a better way to spend Kevin’s birthday. Jon’s Mom spent the day with us and went to the appointment with us. 

Unfortunately, after the diagnostic Dr. Nemeh told us that another injury had occurred to Kevin’s neck and spine. This is very troublesome for me. I am now extra aware of this and cannot remember any major falls, except for a few stumbles. It is very unlikely that I would not be aware if Kevin had a fall. I began wondering if there could be another way that Kevin could be causing this injury besides a fall. Dr. Nemeh pointed out the disc on his mid back that was sticking out and after treatment it was fixed. After our session, we went to get a bite to eat with Grandma before going home. Kevin had on nylon shorts and when he went to sit on the booth, he slid right down to the floor - like 20 minutes after treatment! It didn’t seem like a bad fall but still not good after being aware of falls. Then 3 days later he was walking down the steps and I heard him fall from the last step. Kevin was very upset and grabbing his leg in pain. I was worried something was broken and I grabbed the holy water our friend had given us and said a prayer. He seemed fine afterwards with just a small bruise on his shin. So we shall see what comes of this and how the rest of the 8 weeks goes until our next appointment with Dr. Nemeh.

Otherwise, the appointment went well. Dr. Nemeh was pleased to hear of the new things Kevin was doing that I posted in the September update. Kevin continued to be verbal during the appointment - which is starting to feel normal now :)  Dr. Nemeh told us to continue to use the KT kinesiology tape for Kevin’s left foot. We have been very grateful to have help with that from a knowledgeable friend from church. 

At the end of our appointment, Dr. Nemeh said how much better Kevin’s left foot looked after treatment - more flexible and straighter. And so I made the comment “so there’s still hope”. I think I was trying to say it with with a period or exclamation point but it came out more like a question. Dr. Nemeh said firmly to me “Keep the faith, Mom, keep the faith.” He said miracles continue to happen every day now more than ever - he has patients that are regrowing fingers! So of course, his comment made me feel a little confused and for the next few days I began questioning myself if I had the faith. I know I have peaks and valleys but I do try my best to stay hopeful and faithful through it all. In fact I had been feeling proud of myself for not feeling down or worried about Kevin and his future during this birthday this year. There have been so many small positive improvements with Kevin that it’s hard not to be hopeful and grateful for it all. All is well and all in God’s time. 

I don’t think I have mentioned this yet - Philip Keller (Trapper the radio guy) has a website/podcast if you want to hear about “real people and real miracles” at www.blindfaithlive.com

Here’s a description from the website:

Do you need a miracle?  Is there a secret to having prayers answered? What is the key to being on the same page as God?  Could someone actually have a relationship with God to the point that they knew they were being directed by the Holy Spirit?  Those were my initial questions. They are answered very powerfully in each podcast.

These podcasts and blog are to showcase real people telling their real miracle stories. Adding to that, is the inspired commentary of Dr. Issam Nemeh. He prays, and things happen. It is only logical that the God who is performing these miracles is also inspiring Dr. Nemeh’s commentary. Perhaps you need to hear or read something that is on these pages.

http://blindfaithlive.com/#sthash.SP0ZSGgZ.dpbs

September Update

It’s that time again. We are going to see Dr. Nemeh tomorrow on Kevin’s birthday! So it’s a good time for me to reflect back since our last visit and make note of changes and new “Kevin Shenanigans” we’ve seen in the last couple months.

The most recent Shenanigan is that Kevin began leaving the house to walk outside WITHOUT ME!. Yikes! So this is good and bad, right!? I love his independence, his determination, and giving him some freedom. But I also have to think of his safety. I’m not confident that he would not cross the street if he decided that he wanted to visit a neighbor. I also am not comfortable with him not being visible to me. We are fortunate to have very good neighbors that I know would look out for him if they saw him out without me. Luckily, when he began doing this I was aware of it each time. I tried to stay on the porch as long as I could, to give him his freedom. I told him he had to stay on the sidewalk and not walk too far down the block so that I could still see him. If he started to veer off, I would call his name and he would get back to where he needed to be. Sometimes he would test me and all I had to do was start to walk down the porch steps and he would quickly correct himself - which made me have an inside chuckle. Finally, it seemed he was getting too comfortable going out the door and I was worried I would miss him leaving. One time I was talking to my Aunt on the phone and he went in the kitchen, grabbed the garage door opener, and opened the back door and opened the garage door. After that episode we went to the store to buy one of those door alarms for each door in the house (thanks to my sister’s suggestion). It works like a charm - a very loud effective chime that is. I kinda cringe every time I open the door - which doesn’t look very welcoming to the person at the door. We explained to Kevin what the alarm meant and it stops him when he hears it. He comes to me and then indicates that he wants to go outside - which is fine - I just need to be out there with him. But this doesn’t necessarily mean he gets to go outside right then and there every time either, like one day he opened the door as I was getting lunch ready. He came to get me and I told him we could go out after lunch. A minute later I was looking for his applesauce cup that I thought I had put his supplements in but couldn’t find it. I found it on the floor next to the door - his way of asking one more time if we could go outside - another inside chuckle. Once I had to see exactly where it was that he wanted to go - so he let me follow behind him with a little distance between us - he walked around the whole block! Not something I’m totally comfortable with because we are still working on his walking - it makes me uneasy seeing him walk distance incorrectly. But on the other hand…maybe there is some improvement in his walking which is why he is choosing to walk the distance. My Mom, has seen Kevin pretty regularly every few weeks over the last several months and she kept commenting that his walking seemed to be improving slightly each time. So maybe it is - it’s hard for me to see it on a day to day basis. 

We received a new control unit for the Mollii Suit and I immediately noticed Kevin’s left hand physically moving during the activation. Really cool! Which makes me wonder if his old control unit was really working - but I won’t dwell on that. Not long after, one of Kevin’s Buddies was shaking hands with him. He always asks for Kevin’s left hand and he commented that he noticed an improvement in it. Again, it is sometimes difficult to express exactly what kind of change or improvement, because it is usually something very slight, but at the same time significant for Kevin. 

I love being able to comment that Kevin continues to make his sounds. I am so happy that he has not lost this ability, as he has in the past. We sometimes hear a new sound here and there. The last one was “me” - which probably goes along with his independent streak I mentioned above. 

One last story I have to add. I had the car packed for us to go visit my family. We left the house and started driving but we had to pick Jon up from work. When I passed the exit that we normally take on the way to Grandee & Pap’s house - Kevin immediately started making unhappy noise that I missed it. I thought this was pretty significant because it’s not like the exit said Middletown - this was an exit near our house, early into the trip. Never underestimate what Kevin understands and observes. Kevin’s cousins know this - when we arrived they knowingly asked if Kevin had been excited during the car ride. I heard a cute story, that this same cousin had randomly met a new friend and they were talking about their cousins. When she told her new friend about her cousin Kevin, she matter of factly said he doesn’t talk but excitedly told her new friend that he was beginning to make A LOT of sounds! This puts a BIG smile on my face. 

Healing Mass - September 9, 2015

A friend told us about a Healing Mass that just happened to fall on the date of my Dad’s Heart Anniversary - so we took it as a sign to make the effort to attend.

People attend a healing for many reasons, often times it is for their health or something physical but it could also be for something mental, emotional, or spiritual. And sometimes a person may attend with the intention for something physical but come away with a change of heart or mind or soul. 

The Healing Mass that we attended was slightly different from the one we attended with Dr. Nemeh in 2006. Sure, it was obvious some people were there for a physical/medical healing but my guess is that many were not, they were there for a spiritual healing. 

When people see Kevin it is obvious he needs a physical healing. On the outside it looks like something is “wrong” with him. A fellow special needs Mom recently shared that while she was shopping with her son, a child in the store stopped and asked her Mom “What’s wrong with him?” and the Mom of the “normal” child gave the simple but clear answer “Nothing.” This brings me to the very strong feeling I had during the Mass that Kevin didn’t need to be there - he didn’t need a healing - he is already “fearfully and wonderfully made”. It was I who needed the healing and not the physical kind.

I’m not saying I don’t still pray that Kevin be healed from some of his disabilities that hold him back or at least a few small things to make life easier for him and me. And please don’t misunderstand, I know that God didn’t make a mistake when giving us Kevin. I don’t think it is wrong that we try to help him develop to the best of his ability. After all, that is a parents job, to love and help their children develop to the best of their ability. And of course, like all parents I want the best for Kevin. So if God’s plan, one day, included a small or big healing for Kevin - I wouldn’t object. 

After Kevin received his personal healing we sat back down in the pew for a while. It was getting late, so we decided to leave before it ended, as we were leaving our pew, every person sitting in the pew in front and in back and beside us stopped us to say they were and would continue to pray for Kevin and us. I have two comments about this. First, it gives me great comfort to know that strangers have empathy for Kevin and our family. I do have challenging days and fears for the future. So when someone says they remember us in their prayers, it brings me comfort and peace to get through the bad days. Secondly, I’ve had moments in my life, when I am feeling sad or feeling like “life isn’t fair” and then someone crosses my path with a greater life challenge than what I am dealing with, and it puts my life in perspective. It reminds me to be grateful for all that I have. I suspect that there have been times when Kevin has had that effect on someone else. In fact, I would guess based on the response that Kevin received from our fellow pew mates that many had those same thoughts. But like I said, Kevin didn’t need to be there - but maybe the rest of us did. 

My healing is knowing that although Kevin may have the obvious physical disabilities that many of us feel need to be healed, it is comforting to know that the healing that many of us “normal” people need Kevin doesn’t need and may never need. His spirit is not disabled. His spirit is whole and bright and a beacon for us all. 

This is exactly the peace of mind I needed as Kevin’s birthday approaches. A time of year that is usually very challenging for me. And since I am finally posting this the night before his birthday I can honestly and happily say that this year, I feel no worry or anxiety. Hallelujah!