Happenings Around These Parts

Summer is in full swing around here....and my kids are doing school work. They are super excited about that. (Note the sarcasm.) I decided that because they are all staying home again this upcoming year (more on that in a bit) that we might as well get a jump on things and begin the school year early. This way they won't forget what they have learned, and we also have the ability to go slow and steady year round. Needless to say I have some grumpy boys who want to do nothing more than to sleep in and play with friends from sun up to sun down. Being the bad mommy is no fun, but sometimes it is completely necessary in order to accomplish what is needed to be done.

Assateague is fast approaching. We are leaving on Tuesday of this coming week and all week long Bob has been planning and preparing for our trip. The whole family is completely excited. This trip was a favorite on their lists, and after having had to cancel our NYC trip due to Sarah being in the hospital, the time away from home is something that we are all looking forward to. The dog will be dropped off at my parents on Monday evening, and then we are heading down to MD at the crack of dawn on Tuesday. I cannot wait to sit on the beach with the kids for a few days and do nothing but just be together.

Josh and Andy are finishing up a soccer camp this week offered by the high school soccer coach. They are having a good time, and are looking forward to (hopefully) making the middle school soccer team this fall and playing together. They are having a good time with friends and I am finding that I am having to pull back on how much time they are spending with others outside our family. I completely understand their need to be with their friends, but it is important that they are not with others so much that they forget what it is like to be a family unit.

Elizabeth is still rocking and rolling. I forget that she is only 7, and sometimes allow her privileges that the other kids did not have for many years beyond 7. (Riding her bike with her siblings to friends houses is one example.)  I need to remember that she is a different kind of kid and that I need to hold a firm tight grip on her and not allow her as much freedom as I give her. It is so much easier for me to let her do some of the things that I do, but it is not always the right thing to do. Sometimes I just get so tired from parenting her though, that I give in and allow her to do things that she has no business doing. I am tightening the reigns again, and am trying to remember that a bit of parental headache now will pay off in the long run. I have problems with her that I did not have with the other kids because I was very consistent with them when they were younger. I was not consistent with Elizabeth, and she exploits that (which is my fault and not hers). Consistency is becoming a key theme again in our home especially for the youngest young lady. This is causing a bit of growing pains  in the Gregg household.


After much discussion both with the kids and between Bob and me it was decided that the kids are going to stay home for another school year. Josh made a decision to go back to school at the beginning of June, but then after some discussion with him we decided that another year home would be a better choice than going back to the public school. At this point both boys are planning on going back the year after this one coming up. I am okay with that decision, and will 100% honor that if that is what they decide to do. Josh had some concerns about being home that made him want to go back - we addressed those concerns with him (and they were valid) - and he decided that it was okay for him to stay home for the upcoming year. Andy and Elizabeth never had any intention of going back this year, so they were a no brainer when it came time to finding out what they wanted to do in the fall. Sarah on other hand was a little more tricky. I was willing to let her go back to school so that she could try and see if she could make it, but Bob was more reluctant. After discussing the whole situation with him I agree with his points (her frequent hospitalizations, infusion center visits, lack of vision, etc...) and we decided to keep her home for another year. I ordered everyone's school books already for the upcoming year (that is what we have been using this summer), and once Sarah saw her new text books she was ok with staying home. She said that she felt embarrassed that she told her friends that she was going to be going back and now she has to tell them that she is not, but I told her that they would understand if they were her true and real friends.

As for Sarah where do I begin? She never regained any vision in her right eye. She can see shadows, but she cannot see anything beyond that. Her left eye fluctuates between 20/50 and 20/70. She is currently on steroids, but that is not helping this time around. (She is also still on a slew of other things.) She will have an MRI in two months regardless of whether or not she is currently on steroids to see if she has developed any new lesions on her brain or spine. Her pupil in the right eye is still responding to light which means that there is some hope that she will regain some vision, but it has been 2+ weeks since she lost it. This is the longest she has ever gone without getting any better.  She had a doctor's appointment today at the Mellen Center and she was referred to a facility that assists those who are blind. They will be able to help us make the transition (should we need one) from the seeing world to the unseen one. I have had to rethink how we live our lives a bit, and her vision loss weighs more heavily on my heart than I would like to admit. I was letting her ride her bike down a couple of blocks to her friends house when I realized that she has no peripheral vision in either eye and no vision at all in her right eye. Therefore, when she is trying to cross a street she may not see a car coming down the road. I cannot believe that I didn't think of that before recently. I feel a bit like a dummy. In order to help her with this, I have told her that I would like either her brothers or myself to "drop" her off anywhere she goes on her bike. She is concerned about feeling like a baby, and I assured her that we could drop her off very inconspicuously. She seems to be okay with that. I know it sounds crazy, but she doesn't look like a blind person normally does, so I forget quite frequently just how much she cannot see. It doesn't help at all (although I completely understand why she does this) when she lies to people and tells them that she can see things that they cannot see at all in order for her to feel like a normal girl. (Although, I know she is a bit more honest with Bob and me she still will sometimes wait a couple of days before telling us about a new symptom.) We are currently on the lookout for large print children's books so that she can still read on her own. Not being able to read books is a source of frustration for her. She has been trying to read to me again, and is doing okay, but she has to move the book around in order for her to get it in line with her pockets of good vision in her left eye. She is trying to guess at a lot of words because she just cannot see very well.  This makes her feel badly. I try my best to tell her how proud of her I am for even trying, but some days my encouragement is not helpful. She remembers a life before this disease and it is slowly slipping away from her. She told Bob not too long ago that even her dreams are blurry. She can longer dream in clear vision. I had always hoped that would be the one place she could escape to and be normal.

I am in the process of developing a new strategy for my healthy habits. I want to finalize a couple of more things before I share it, so most likely I will present it in two weeks. Other than that - this is what is going on in our lives.