Thursday, January 29, 2015

Just Say No

When I was a pre-teenager the Nancy Reagan "just say no" campaign was on the television all of the time. Just say no to drugs. It was a great concept, and if I remember correctly pretty successful. "No", the universal word that means the same in every language, is very powerful; yet, we don't use it often enough about anything. What do I mean?

I mean that for so many of us, if someone asks us to do something and we don't want to, sometimes we'll do it anyway just because we don't know how to say no. If we do say no, we feel like we need a really good excuse to say it. We will offer more information than is necessary and explain why we cannot do what is asked so that we do not have to feel guilty about saying no. 

On the flip side, people have gotten very brazen about asking for an explanation. No wonder some of us have gotten to feel like we need a good reason to turn people down. Asking someone why they cannot honor your request is asking them to defend themselves. It is essentially saying that you will be upset unless the person you are asking can adequately defend their reasoning. We don't want our friends to be angry or upset with us. We don't want the pastor of the church to think we're lazy, bad people. We don't want the teacher at school to think we're horrible parents.

I'm taking back the power of no! Recently a Facebook friend asked if I'd like to host a party for her new business. I didn't respond to the first request because I saw that it was a group message and she was trying to see if any of her friends were interested. That's how those things go, you have to ask everybody. I've done those multi-level-marketing businesses and I understood being asked. When I didn't respond, a week or so later I got another message asking if I was interested. I thought, she must not know what we are going through. I got ready to type a message about how we are at the hospital, and dealing with Anna's cancer and bone marrow transplant. It occurred to me, I don't have to do that. I can just say no, thank you. She doesn't need an explanation, just an answer. I simply responded no thank you and she gracefully accepted my answer, thanking me for such a quick response.

I'm not saying there aren't times we need to give of ourselves when we don't want to. Obviously we need to go against our selfish nature and do for others; however, we don't have to do every thing that others ask us to do every time. There's no need for elaborate explanations.

Just say no. It's okay. Really.

If the person making the request cannot except your refusal as it is without questioning it, maybe you should evaluate who that person is to you and what they mean to your life. Those who appreciate and value us should be able to accept a no without demanding an explanation.

Tuesday, January 27, 2015

Anna Reached a NEW Milestone!

It's been a really long time since I did a MeCP2 post. With the lymphoma, MeCP2 has taken the back-burner, but it's still been very prevalent in our lives. Can you even imagine what dealing with cancer treatment is like for a kid who has special needs?

Yet, even through all the rigorous cancer treatment, we have seen Anna make strides in her development and ability to learn and understand. Normally, I would not have posted the photo above. Her hair is disheveled, she has dark circles under her eyes, and she's a little bit pale; but, that shirt she is wearing is special. Why? Because it was the first time she ever put on her shirt by herself. Ever. In her entire eleven years.

There is a broad spectrum of how MeCP2 Duplication Syndrome affects girls. We know that in boys it's really harsh. It's a rare disease, and extremely rare for girls. It took a long time for girls to be included in the studies because the original thought was that girls could not have it. In a few girls that we've known, they have been like Anna...able to function with varying degrees of severity. In some girls, the duplication trans-locates and attaches to another chromosome, making their symptoms much more severe like the boys. I said that to say that if you have a MeCP2 girl, understand that she may function differently than Anna. It's great to get an idea of what you may be facing; but, we've learned about girls that function better in areas than Anna does, and girls that lack the functionality that Anna has.

 I will cherish this photo forever. In families where the development is "normal" from the beginning, a thing like putting on your own shirt is natural and expected. In our world, it's a great accomplishment to be celebrated! For years, Anna could put on anything that you could pull from the bottom up. Her diaper/pull up (no she is still not potty trained), a skirt, or stretchy pants were never an issue. She could put on socks and shoes, though sometimes she still needs help. It wasn't until mid-way through year eleven that she all of a sudden one day said she was ready to put on her shirt by herself, and believed in herself that she could do it. She didn't want me to watch her, but went into the bathroom and came out with a "ta-da"!

If your child has MeCP2 Duplication Syndrome and you are searching the internet for information, you are welcome to read my other posts about it. There are links at the top and side of this blog that go to those posts. Also, if you haven't already, look up the Facebook page  for families. It's a great way to connect with other families, hear their stories, get an idea of what you are facing, and move forward.

Thanks for celebrating Anna with me!

Monday, January 26, 2015

Hipknoties Convertible Wrap - Dress, Skirt, Top, Whatever!

Have you seen the Hipknoties convertible wrap? With one garment you can have tops, dresses, and skirts! I saw a video going around on Facebook and I watched it. Then I watched it again, and again. I started to dig for more videos. After what was probably a couple of hours obsessing over this thing, I had to order one. The size I wanted runs for about $68, which I wasn't quite prepared to spend, but I found one for $27 in the SALE section. Yippee!

Plus, since I "liked" the facebook page, I was given a coupon for 10% off. So I ended up spending $30 total for shipping and everything. I haven't gotten it yet, but I am so anxious to get it! In the meantime, I'm telling you I have looked every single day at photos, videos, the iPhone app, and more preparing for all the different ways I can wear this thing! Here's a short video about it:




This is (hopefully) going to be an especially nice blessing for me, because if you read my blog, you know that Anna and I are still in the hospital. Right now, we aren't in-patient, but we are staying nearby because home is too far away to travel back and forth. With the delays and setbacks we have had with Anna's bone marrow transplant, we'll be here for many more months. 

It is just not convenient to have a lot of clothes here. We've been shuffled in-patient and at places nearby the hospital so many times that it's just too much to have to pack and move so often. We arrived with many more clothes than we now have with us, sending bags of them home with family because we just couldn't keep up. I get so sick of wearing the same old frumpy comfy clothes. It's what is most practical for our situation, but it makes me feel blah sometimes. When I get this wrap, I hope that it's everything I'm expecting. I know every style won't look good on me, but I'm confident that I can find many that do. 

There are ideas on Youtube, on the Facebook page, on Pinterest...everywhere! I think I may be able to find more than 30 ways to wear this thing! Maybe I'll do a 30 days 30 ways post if I can make that many ways work. 

You know what else occurs to me? You don't have to worry about spending money on clothing that might not fit if you gain or lose weight. Don't you hate that? I was on my favorite clothing site yesterday taking advantage of store credit I had forgotten that I had. I picked out a top and thought, oh no, I need a larger size but I'm aiming to lose weight once we're done at the hospital. I'll enjoy it now but then it won't fit anymore. Not with this wrap! It will always fit.

I will let you know how it goes when I get it, but I thought I'd let my readers know in case you are interested. If you decide to try one, please put me as a reference on how you heard about Hipknoties. (Laura Taff) There is a rewards program, and referrals will get me points toward my next purchase!