I received this award from Herrad over at Access Denied-Living with Multiple Sclerosis.
I am passing this award on to the following five blogs:
Kelly Kunik at Diabetesaliciousness.
Cara at Every Day Every Hour Every Minute.
Jonah at JonahDiabetic.
Wendy at GandKsmom.
Jaime at My MS Journal.
Yesterday was a tough one. I was already in a funk, you know that low place we all get sometimes. It just seems like every person I spoke to had more bad news to share. My great-aunt passed away last night. There are few people in this life that we know and can not say one bad thing about, she was one of those people. She had such a sweet, soft way about her. She was my grandmother's baby sister and now there is only one of that generation left. My heart is so sad but I know she is no longer in pain. I hope that someday I can be half the person she was.
Today I will try to look to the positive things happening. We are preparing for the arrival of our new baby chicks tomorrow. Not many things can lift a persons spirits like playing with 25 fuzzy baby chickens. Stepping into my back porch makes me smile right now because of all the wonderful plants growing waiting for the time to be transplanted into the garden. Tomatoes and Lettuce and Artichokes, Oh my! Today I get to meet one of Blue's aunts for the first time, that will be a good thing.
I guess when it is all shook out, said and done, the important thing is to keep the balance going right? Bad things happen, sad things affect us and most of it we have no control over. We are then responsible for finding the good stuff and the blessings in the moment or the day in order to keep from going under. Here is to hoping that we can all stay strong and continue the search for balance.
We started some physical therapy for Blue. I really hope this helps him now but hopefully it will help him continue a range of motion in the future as well. When we were done with the session last night I was surprised at how I felt like I had just been through a work out. lol Maybe it will be good for both of us. Who needs a gym, I have a family. =)
One of the wonderful parts of starting this therapy is that we had to work on our communication. We talked about how very important it is to be honest with each other and how he can not be macho guy but instead let me know when we hit that line of stretch vs pain. We in a way re-visited our relationship of being partners and it was a good thing.
Taylor continues to show symptoms of Lupus. I think I finally have her talked into testing to either confirm or rule this out. There are six confirmed cases of Lupus in my family that I know about. There are even more cases of auto-immune diseases of other forms as well. I want nothing more than to have it just be an odd coincidence of harmless symptoms and for her to be completely healthy. After going through the whole denial thing with both Blue and Daniel I refuse to keep blinders on when it comes to my family's health. I would rather rule it out than to sit and wonder and try to ignore the possibility.
We are going to have to get Sarah back in at the Ped. Urologist. I thought that after her surgeries for Renal Reflux that everything was fixed and good. She continues to have infections about every three months and the pediatrician treats them but doesn't seem to come up with ways to stop it or figure out why she has them. We do everything to prevent them that we know of but still she gets them. It is so very frustrating!
In the morning Sarah has her first ball game of the season, she is so excited. We have had so much rain that it has just become rediculous and I am so thankful that it is supposed to be beautiful and dry tomorrow for her game.
I hope that everyone has a wonderful weekend and that each of us can find a blessing or two along the way.
Have you ever experienced caregiver guilt? It is a lot like the mommy guilt thing. It was a pretty big part of my life back in the beginning, when each diagnosis was new. I learned over time that feeling guilty about being well when those I love so very much are not does not change anything or help in any way. It popped back into my life the other day just unannounced and unexpected. Blue had a really rough night, not much sleep and lots of pain and uncomfortableness from increased spasticity. Where was I? I was sound asleep, never even knowing that he was going through any of it. Bless him, he would never wake me up to let me know, but I wish he would. My brain tells me that when I get to bed at night I almost fall asleep on impact because I am so tired, but my heart tells me that this is not an excuse because Blue experiences incredible fatigue all of the time and he should not have to lose sleep alone, I am his carepartner. I felt so guilty for sleeping through it and not just knowing that there was a problem. Maybe I could have rubbed his legs or something, maybe I could have just watched over him and let him know that I was there and he wasn't alone in it.
This is kind of different from what I experience with Daniel. With my son I constantly feel like when problems arise that I am responsible, that I should have seen a trend or that I miscalculated somewhere, it still feels a lot like Mommy guilt. With Blue I really don't have a say in what his CNS is going to do, no more than he does. The thing is that I am his partner, we are in this together and when he is having a hard time I should be right there with him. I want to protect them both, make things as easy as possible for them both, I can't do that if I sleep through a low or through a night battle of pain.
As caregivers/carepartners, we have to take care of ourselves, we must value ourselves enough to allow ourselves to recharge or we are of no use to anyone. If we are both tired and sleep deprived it can only lead to bad places. That being known and understood, it does not in my mind justify not being aware and available in his time of need. I am so thankful that he understands how much I love him and that I would absolutely move heaven and earth to make it all better. I guess we just move forward and try to do better.
It is amusing to me that my lament for the past few years has been for some sort of balance and yet when something that resembles balance comes along it makes me feel lost. Balance is not so much about peace and all being great, that is one sided. I think that is the picture I had in my mind however when it comes to the word balance. Weird, I know.
Lately our lives have really been a pretty even mix of good and bad, frustration and joy. Spring has arrived but we can't get everything accomplished yet because of all the rain. The baby chicks are going to arrive a few weeks later than we had planned but that gives us more time to prepare the second chicken house. We are pulling our hair out trying to get our teenager through the teen angst thing but the youngest has hit that place where she wants to be Miss Helpful, even with chores. Daniel seems to be happy and more at peace lately but he seems to have totally forgotten how to use all his tools, which means he is totally disorganized, his grades are really suffering and his diabetes is taking a total back seat in his mind. He does this on occasion, it is kind of his way of taking a break. I can't blame him, he has a lot to deal with, but it seems to take so much to get him back on track.
Saturday was beautiful with 75 degree weather but it was not such a good day. Yesterday however was colder and drizzly but was such a peace filled lovely day. We took the kids to see Monsters vs Aliens, which they really enjoyed. We even were dead on when it came to bolusing for movie snacks and that just doesn't happen often for us. Sarah hung out at Grandma's house for a while and had a great time. It is so odd to have family nearby now, we have just been on our own for so long. I am so thankful that the kids are getting the opportunity to build a relationship with her and having her close has really been grand for Blue. He loves being able to see his Mom whenever he feels like and I think keeping his mind happy helps keep his body healthy.
The journey continues on and we try to recognize all the blessings and not just the challenges. That is the secret to balance, for us, at the moment. Hope you are finding your place on the scale too.
Happy Birthday Baby Boy!!! Ummm Sorry, Happy Birthday Young Ninja Boy. We love you, oh so very much. My heavens, My heavens, Daniel is Eleven!
Does anyone out there with MS ever get a rash, for lack of a better word? Blue had a weird "rash" on his arm, but it looked more like someone had hit him really hard and made all those little red dots show up, does that make sense? Then on his side he had the same thing only it was in a line like a scratch would be and about a quarter inch wide and maybe three inches long. It did not itch or hurt or anything. The only other time he has had this was about three years ago he had one of those long skinny ones on his back but it just went away. These lasted about a few days and then faded. We have not noticed anything out of the ordinary as far as related symptoms, just the normal MS stuff. So if any of you have had a similar thing we would love to know. Thanks.
