Thursday, May 31, 2012


Change. Growing up as a military brat, then later being married to a military man for 27 years  you would think I would be used to change, but I hate change. Every 3 years my dad would get orders. We would prepare for the move , learning everything we could about what our new world would be like. You would grieve with each move having to say goodbye  to friends, school, and everything else that made that place feel like home. Change; we would start all over again in the new place. Trying to figure out how to fit in and feeling very much alone. I had to go outside my comfort zone to make new friends, get used to a new school and do what I could to  make that new house feel like home. You would think that military life, and the changes that involved would have prepared  me for what  was to come in my life, Duchennes Muscular Dystrophy.

Change. Constantly shifting the normal. Constantly changing to make life as  normal as possible for Ryan.  Change; going from walking to needing a scooter to a wheelchair. Change; purchasing a wheelchair accessible van. Change; remodeling the downstairs of our home to make it wheelchair friendly. Change; putting in a stair lift so Ryan can use the upstairs of our home only 3 yrs later that lift is not longer usable. Change; building a wheelchair ramp . Change;  trying to help Ryan to learn a new way to feed himself after back surgery. Change; purchasing a hospital bed. Change; bringing machines into the home that will help Ryan to breath easier.

In military with each move we had  to say goodbye to the life we  knew. Duchennes, with each change we  have to say good-bye to what Ryan can no longer do, then do the best we can to make his new world as normal as possible. As with the military life, having a child with a long term disease you feel very much alone, like an outsider, you have to go outside your comfort zone many times to advocate for him.
With the military, we knew we were only going to live in that place a short time, so we got past our grief of having to say goodbye , excepted our new life and learned how to make our new world work. Duchennes is very much like that. You know your time with your son is limited. So you do the best you can to except these changes as they come, and  learn as much as you can about this new world. In the military you knew those new orders would come and you would have to move, but while waiting you lived your life making the best of where you were.  Having a son with Duchennes you also know that those changes will come,  you try not to focus on that  but on ways you can make today the best it can be.

Wednesday, May 23, 2012

Laundry Cleaner

My friend Erin gave me this recipe for home made laundry detergent.
1 box borax
1 box Arm and Hammer Washing soda (not baking soda)
3 bars fels naptha (bar of washing soap)

Using cheese grater, grate 3 bars of fels naptha, mix together with the borax, and arm&hammer washing soap. Store in an airtight container.
Its just that easy!

Erin suggest using only 1 Tblsp of the powdered mix per load. I did 2 loads of laundry this morning just to try it, it works great! I did use a little more then 1 Tblsp but I am washing extra large loads of laundry. I bought all the ingredients at Walmart. They were in the Laundry soap area all right next to each other on the shelf.  It cost me around $8.00. I am curious to see how long it last. I will let you know!

Do you have any home-made cleaning products you have tried and care to share? Did it turn out how you thought it would or was it a flop?

Monday, May 21, 2012

Sometimes you just have to give up.

Over a year ago Ryan had Spinal fusion surgery.  The recovery from the surgery was more than we could have ever imagined, not only physically but emotionally. Ryan lost a lot of independence over night  and has had a very difficult time dealing with the changes.  He saw a therapist for 3 months, but after a few comments she made to him I realized she had no idea what he was going through. Ryan and I both decided that it was pretty much a waste of our time to continue to see her so my search went on. I called his doctors, talked to the school social worker, asked other parents but no one seemed to be able to give me good direction.
 I was becoming discouraged. It had been over a year, Ryan was still struggling with the changes and I was at a lose how to help him. Finally one day I said to God, I give up. If you want Ryan to get help your going to have to drop the answer in my lap. Shortly after that time I went to get my haircut. I was sitting on the couch waiting for  my appointment while my beautician rang up his last customer. I heard the customer  say to him that she was leaving and would be back in October. I was being nosey so I asked her why she was leaving Washington during the summer , after all summer is the best part of Washington!  She turned to me and we started to talk. I found out she works at the Army base as a therapist and is only here for 6 months at a time. I did not know that Fort Lewis had therapy available so  I asked her a few questions about her work and she sat down on the arm of the couch right next to me . I found out that she specializes in grief and lose, as we continued to talk I told her about Ryan having Duchennes MD . How much grieving is a part of DMD life. I shared with her my struggles with finding a therapist  who understand that. She said that she wished she wasn't leaving because she would have loved to had the chance to meet with  Ryan. She asked if she could have my phone number . She stood to leave leaning over to give me a hug and nearly fell onto my lap! We laughed about it and said good bye. I had tears in my eyes as I was getting my haircut and continued to think about our conversation.   I was disappointed that I had not meet her 6 months earlier.  I was discouraged  thinking I would  probably never see her again, and felt stupid for crying in front of everyone in the salon.  Having a little bit of a bad attitude I thought sure God bring this lady into my life as she is moving!
I would say within the hour my phone rang. It was her.  She gave me the phone number of a person that she felt might be helpful. I thanked her and hung up the phone. Once again my attitude came up. I was thinking oh great another number. I had not had much luck with other recommendations but I figured I would give it a try. I called the Dr.  leaving  a message on his answer machine and waited for a call back.  2 days later he called me, he asked me a few questions about Ryan and when I mentioned he had DMD he knew exactly what that was. He said he worked with numerous boys that had DMD. He then proceeded to ask me  specific questions. I was stunned. I felt as if he had been watching our life over the last year. he knew EXACTLY what was going on. We set up an appointment for Ryan and hung up the phone. I was crying, I knew we finally found the right person! As I was thinking about how this all come about I then remembered my conversation with God, that he was going to have to drop the answer in my lap and realized that is exactly what he did! So funny that God dropped the answer in my lap at a beauty salon!  I was so thankful, and asked God to forgive my bad attitude. There are times that God wants us to do something towards the answer to prayer and then there are other times when he just wants us to surrender, give it up, wait  and trust him to bring the answer to us!
Can you share a time when God brought an answer to prayer in a very real way?

Friday, May 18, 2012


Shopping for jeans has to be a women's worse nightmare. I was out to find the "perfect" jeans. I grabbed jeans of all types to try on. I am not lying when I say I must have tried on 50 pairs! During this process my good friend Laura called me on my cell phone, so of course I answered it and talked with her while I was trying on my mountain of jeans. One after the other I tossed them aside. I finally found the perfect fit! loved how they felt , so comfortable. So while still talking on the phone I grabbed my perfect jeans to pay for them,  finished my phone call and went home. Once at home I was so excited to put on my new jeans, to admire my find, only much to my horror when I put them on they didn't fit! WHAT??? they were so perfect at the store. It took me a minute to realize I was so caught up with my phone call that  I had bought the wrong ones!! uggg!! I was so distressed. I went right back to the store and much to my surprise my pile of jeans were still in the dressing room area. So once again back to trying them all on again. I never did find the perfect fitted jeans again. 
 I think the secret to finding the perfect fit jeans would be to take a class called Jean-ology 101.  I mean after all we have so few choices right?  The following would be covered in the course; Classic , slight, demi, bold, supreme curve; legging , the much dreaded skinny, slim, straight, boyfriend, bootcut, flare, figure enhancers; lowest rise,  low, mid, high rise, sits at waist, or slightly below waist; short, medium, long, peddle pushers, capris, bermuda, short or daisy dukes short. Oh and then there are the shoes to go with the jeans, someone stop the insanity!  Oh how I miss the old days of just your classic levi or Lee jeans (aka Mom Jeans). Life was so much simpler then.

Thursday, May 17, 2012

A Reality Check

Tryed shopping theraphy today. All was going well. I was enjoying looking at the sales and finding a few good deals. I should have just stopped then and went home but decided to try on a cute summer outfit. Nothing like a three way mirror in a department store dressing room to give a girl a little reality check. Proof that it was a long dark cold winter.   So what do I do? I go home and eat a big bowl of icecream with hot fudge! yep that will take care of it !!

Friday, May 11, 2012

I am such a dork!

I have a bird feeder on my back deck and have seen many different birds. This morning I glanced out the window and caught sight of a bird I had not seen before. It was the most brilliant color of yellow, so bright and pretty. I grabbed my camera  to get a picture of it but realized I didn't have the close up lense on it.  I ran down the stairs to find the other lense all the while praying that the bird would still be there. I grabbed the lense and went running back up the steps to the back door. The bird was still there , I was so excited . I started taking pictures only to realize the camera wasn't  working. What the heck? The battery is charged, oh, duh  the memory card wasn't in the camera so once again I ran down stairs to find it. By this time the dogs were all caught up in the excitiment and were running up and down the steps barking. I was hoping they wouldn't scare the bird away! I got the memory card put it in the camera, put the right lense on  and slowly made my way to the back door while trying to quiet the dogs, and catching my breathing from running up and down the steps.  I was so excited to see it was still there !  It stayed long enough for me to get a few pictures and even sang alittle for me!  I am such a dork to get so excited over a little bird, don't you think so ?