I cry

Yesterday, Nathan had to leave early so he could go to a doctor's appt. I tried giving Mike lunch, and he almost choked on a piece of meat that I didn't puree enough. Getting past the fear of Mike choking, I got him into bed for his afternoon nap. Around 3pm, he had another grand mal seizure. This was the third one he's had, and it does NOT get easier. The only thing that made it bearable was the fact that my brother was with me. Someonw, not being alone, made a big difference, although I feel bad that my brother had to witness such a scarey event. I checked with Mike's neurologist and he didn't feel a need to adjust any medication, yet. We will wait and see.

So I now begin my fearful stage, when I walk on eggshells waiting for something to happen again, hoping that it doesn't. Time will eventually fade the look I saw on Mike's face, the sounds he made and the way his body moved. I cry when I think about it, about all that Mike has endured through the years. Now and always, I pray that Mike doesn't suffer.

Life Happens

Yes, along with looking at colleges, Courtney is learning to drive.

She passed her permit test about a month ago, and each weekend I try to take her out driving for practice. She will also need to take formal driving lessons before she can take her road test, but at least she is getting the "feel" of the car. Today she drove me to the supermarket. She did fairly well, she just needs practice.

It's so hard for me to fathom that this is all happening. It seems like yesterday that she would fall asleep on our shoulders, giving us a hard time when she had to sleep alone in her crib. Now she is practicing driving and looking at colleges she wants to attend (she would LOVE to go to school in NYC, but still has no idea what she wants to do).

I started P.T. for my shoulder. Somewhere along the line, in transferring Mike, I hurt my shoulder. Over the Christmas holidays when I was caring for Mike while Nathan was on vacation, it got MUCH worse. I have a high tolerance for pain, but that week I was in tears. I am told that I have an "impingement on my rotator cuff that's causing tendonitis". They believe they will be able to help with P.T. I hope......Otherwise, I'm not sure what I will do.

(The picture is Courtney and Brandon as they get ready for their "Junior/Senior Prom". They were paired with a senior citizen - through an event at their school - for the night at a local assisted living residence. Fun was had by all and they look forward to doing it again soon).

Courtney In Washington

This morning, Courtney left for Washington DC with her school. She was one of 45 students picked out of a class of 500 to go to Washington. The main reason for the trip is to do the March for Life walk to be held tomorrow. Today they did a 1 1/2 hour walking tour of the monuments, then at 3pm they will be going to the Holocaust museum. Tonight they have a nice dinner at their hotel (Marriott) and then a chance to go swimming at the hotel pool. Tomorrow morning they wake up for breakfast, then begin the 3 mile walk. They head "home" tomorrow night, but because they get in so late (11pm), they will go directly to Kellenberg to spend the night (at the retreat rooms). They go to classes on Wed. and will return home after a full day of school.

Courtney had some reservations about going, she was VERY concerned about being so far away from Mike. She was concerned if something happened, she would be too far away. I told her she had to go, this was a once in a lifetime chance. I know she will have a good time. She MUST live her life to the fullest and not worry about what's going on at home.

(Courtney (in blue hat) and her friends at the Washington monument).

My Nights

I lay in bed next to Mike and I am so thankul and blessed that he is here at home with us. I wonder what it's like for people in nursing homes.

I check on Mike often before I go to sleep. After I go to bed, it's very much the same. I am often up "monitoring" him. If Mike gets cold, I put on more blankets....If Mike is hot, I take the blankets off....If he's on his back, I turn him on his side and vice versa..... If he is dirty, I change him....if he is coughing, I rub his back...If he is shaking, I rub his arm to let him know it's OK.... If I find him staring into space, I rub his cheek...If his oxygen comes off, I put it back on.

When I am doing this, I often think about friends and family who are lying peacefully asleep and wish, oh how I wish that was me. Then something snaps, and I think about all those people who are in nursing homes that don't have the one on one care, and I am thankful that Mike has us. Missing a few hours of sleep a night is a small price to pay.

An Uncertain Year

I think 2008 will be a difficult year.

This coming April, it will be 7 years since Mike's diagnosis. When he was first diagnosed, I was told the average life expectancy for Early Onset was 5-7 years. I have read articles indicating 4-5 years. Either way, it has been a long time and I fear what this year will bring for Mike...and for us.

My mom is also getting older and that is showing more and more. For so long she's been coming to the house to help with odds and ends, here and there. When the kids were little, she would watch them for me. As they got older, she would get them to school, appointments etc. Since Mike got sick, she helped with laundry and keeping track of the kids schedule. These days, she's slowing down. She has spinal stenosis in her back and for the last 2 weeks, she has had trouble walking. She refuses to give up doing the wash, as much as we fight with her to rest. The reality is, my mom is no spring chicken anymore and it is evident she will be able to do less and less to help us.

Courtney is a Junior this year. This is a difficult year for her. She will have to begin the process of looking for colleges. She's not sure what she wants to do, but she does know she wants to go to school "near" us. She mentioned the farthest she will go is NYC. The effects of the stress she is putting herself through, as well as normal 16 year old stress, is beginning to rear it's ugly head. I'm not quite sure how we will afford college, I just hope she gets some scholarships. Either way, I told her we will work it out. Oh yeah, and I've also been teaching her to drive. Now if THAT doesn't take a few years off my life, nothing else will.

Taking all of the above into consideration, I think it will be a difficult, uncertain year.

Happy Birthday Mike !

Today Mike is 43.

Mike woke up in such a good mood, which continued throughout the day. He smiled and laughed ALOT and it was SO good to see. When I think about how he spent his last birthday, it makes this one all the more special. After his breakfast, he opened his presents...actually I held his hand as I tried to get him to feel the wrapping paper. Brandon and I guided his hands as he "pulled open the paper". We sang Happy Birthday quite a few times throughout the day and each time we did, he raised his eyebrows. We bought him a Reese's Peanut Butter ice cream cake and he LOVED it. He opened his mouth real wide for it and kept looking for more. Mike always had a sweet tooth.

It was also nice that he got birthday cards from his Aunt and Uncle in Mississippi and his other Aunt and Uncle in Connecticut. I read each one to him hoping that he would understand. I think he did.

Happy Birthday Mike. I pray that you will have many more.

Another Test

For the last few months, my brother has stayed with us on and off. He is in the process of seperating from his wife (it's been 2 years now) and he lives by himself. He stayed with us when he had his shoulder surgery, so someone would be around if he needed anything. Last month, 2 weeks before Christmas, he was suspended from his job. Long story - he's worked there for 23 years and was injured on the job. He's had 2 surgeries and been out alot on worker's comp. Last month his employer decided he was taking too much "sick time" and suspended him without pay for 30 days. He had to hire an attorney and is now in the process of fighting to keep his job. Since he spends so much time at our house, he approached me about him moving in with us. The only space I have is my old bedroom, so if this did happen - we would have to share space in the bedroom because I still need a place for mine and Mike's "stuff".

My brother's seperating destroyed him financially and he has nothing to fall back on. I cannot, in good conscience, not help him. Whenever I see homeless people I would think, "don't they have ANY family". While this would be difficult for the kids and I, I can't see another answer - if in fact it comes to that. I tend to ignore alot of my brother's complaints but it's hard for Courtney and Brandon. They know how difficult our lives have been and they have a problem tolerating other people complaining when sometimes they don't see a reason for it.

Once again I am praying for strength. I know what I will do if the time comes, because after all, family is family. It will just be another test I hope we all pass.