September 13

Hi everyone, I can't believe its already Sept 13th. Seems so strange, being in our own little world down here, that everything else is continuing as usual. Anyway, Darrren was asleep just after 8pm tonight. He was really tired after a busy day, but it was a good tired - he worked for it! Both sessions of therapy, art therapy, and the gym. All good stuff. Duting PT today, I watched him have to get himself up after laying flat on his back on the therapy mat. It was a struggle, and he needed lots of help, but he was really working. Then after sitting up, he transferred into his manual chair. Again, he needed lots of help, but the therapists assure me he's doing well and is improving. After seeing him actually get into that chair, I looked at him in a whole different light. What hard work. I don't think he was all that crazy about "art therapy," but he went and found it enjoyable. He said it was quiet and realxing, and gave him something different to do. He's painting a ceramic candlestick with the help of a hand/finger splint to hold the paintbrush, and he was very patient! I was impressed. At the end of the day, he had an appointment at the gym, and met with an exercise specialist. She is very knowledgeable, positive and optimistic. I think that will be the best part of Darren's rehab here. Its too bad he couldn't have started with her earlier, but he is definitely going to take advantage of her and the equipment.

Tonight we watched the tape about Molly, the 13 year old girl who had a similar injury and was on the Today Show recently. We were all very encouraged by it (thanks Lois!) and it spurred some good discussion among a few parents and patients afterward. The parent support here is great, and there is one father who is very committed to getting the very best for his son and for all the patients. He is definitely a man who can get things done, and he has encouraged me to advocate as much as possible for Darren. I can't wait to see his Doctor tomorrow morning! Watch out, Dr. Murray!!!

Well, good night for now. Time to get some rest, as I need to be here early in the morning. With love and prayers and hope, Cynthia

September 14

Hi everyone! Darren was trying out different kinds of wheelchairs today, and will try another one tomorrow. Its kind of confusing, because there are so many choices. But we'll see what the insurance company says...then take it from there. Darren was so excited to go to the gym today and use a particular machine - the NuStep - but it didn't work out. There was a wait to use it, and by the time his chance would have come, the therapist to help with the transfer would have already left. And since I'm not trained to do a transfer yet, I wasn't able to handle it myself. So he has another appt Thursday morning. Since he had used his manual chair and a manual/power chair alot today, he was pretty tired, and took a little nap this afternoon. When he awoke, Betty had arrived. For all of you who don't know Betty, she is one of my closest & dearest friends. She & I were college roomates for a year, and she is Darren's Godmother. So it certainly is special for her to visit. I thank her family for allowing her the time to come and be with us. I look forward to our time together. (And the fact that she's an OT - occupational therapist - she'll be making sure Darren is doing what he should be!) Darren managed to open another piece of mail today. The envelope didn't look too good, but the letter was intact! And he read it too! He also held and ate an apple tonight. Small but important tasks that mean more independence for him.

Doesn't sound too exciting today, but he is still feeling good and working hard. With love and prayers, and continued thanks for all the cards and letters, Cynthia

September 15

Hey everyone, hello from Atlanta. We're bracing for the outer rim of Ivan's fury; will probably get a lot of rain and wind in the next few days. It seems these storms are continual, and we're only on the outskirts. As they say, "this too shall pass."

Darren had a busy day of activity with his OT, and a group session of PT this afternoon. He was in his manual chair quite a bit, and has increased the amount of time he can wear his shoes. He had a good day. Tonight's e-mail is going to be a little different. It's going to be about me.

Yesterday, my visit with Betty started off and continued into the night with hugs, good conversation, laughter and tears. She is an angel sent to guide and help me. Today was my first foray into Altanta, not counting going to the grocery store and the mall. We headed to "Underground Atlanta." It wasn't underground, the store fronts were half empty and it was very touristy. So we headed out of there, and made our way to the Curb Market. We saw pig's ears, hog hocks and chitterlings for sale. We couldn't get out of there fast enough! So we headed back to where we came from, walking through part of the Georgia State Univ campus. I hadn't realized it was right there in the city. Back to civilization and we had lunch at Johnny Rockets. A lingering lunch with more conversation, laughter and tears. Friendship really is the best medicine. We took the train and the bus back toward Shepherd, but got off early and walked and walked. A stop at Borders, where I didn't leave empty handed, and we walked some more. The weather held out, and there were only a few showers here and there. Back to Shepherd, where we found Darren just getting into bed for a rest. After a short nap, he got up for dinner and amused us with some humor about getting used to a low quality level of food. I can't repeat the whole thing, but it was funny. I look forward to another wonderful evening and night with Darren and Betty. Since he took a nap, I expect he'll be up til at least 10, then we'll head back to the hotel. So enough about me for now! I want to wish all my Jewish friends, their families and acquaintances a "Happy Rosh Hashana." Enjoy your holidays and count your blessings. Please continue to remember us in your prayers. With love and hope, Cynthia

September 16 & 17

Hi everyone, I'm sorry I didn't write last night, but after having a few really good days, we were hit with yet another obstacle: Darren now has a blood clot in his left leg. The good news is that they found it now. The bad news is it means keeping the leg straight and still - bed rest. For how long - we don't know yet. I am waiting to speak to the Doctor this morning. So up until about 5 pm yesterday, Darren had a great day. He started out at the gym, using a Nu-Step machine. By using your arms to push and pull, it moves your legs. His hands had to be strapped to the handles, and his feet strapped into the footrests, but he was able to do 15 minutes. The exercise specialist was so impressed, and so were Betty and I! It was great to see his legs moving. After that, he headed to PT, where he worked on rolling over from his back to his side on the mat. With continued practice, and tweaking the techniques, he was almost able to do it himself. Betty and I watched the whole session, and he was so determined to do it. No wonder he comes back so tired from therapy! So last night, after receiving the news about the blood clot, we allowed ourselves some tears and hugs together. It just seems that as soon as things start going well, another obstacle is thrown in front of us. Then I climbed into bed with him - quite a feat since its a twin bed! We watched the Apprentice together, trying to put everything else out of our minds for a bit. As soon as I have more news, I'll pass it on. Please continue your prayers. I feel we need them now more than ever. Love Cynthia

September 18 & 19

Hi everyone, another quiet Sunday in Atlanta. Its beautiful weather, but we're staying inside to keep Darren company. It was determined that Darren would have to stay in bed for 3 days. They're keeping a close eye on his blood work, which is drawn daily, to make sure the blood is thinning as its supposed to be. The swelling in his leg where the clot is has decreased significantly, so we think that's a good sign. He's feeling quite well; makes it hard to stay in bed. But he rolls with the punches. As usual, he is in good spirits. Darren's friend Kevin Sensbach and his mom Judy were here yesterday. Even though Darren had to be in bed, at least he had good company! Judy is especially sensitive to our situation since her mom has the same injury as Darren. So it was great to have them here: to chat, visit, cry and hug together. And great for them to see Darren and all he can do, too. Ysterday, since John, Ari, Judy and Kevin were all here, I went for a long walk. They all thought I was going back to the hotel to rest, but I wasn't tired. I just wanted a break from the hospital. It was such nice weather, I just walked and walked. I remembered there being a Church some distance away, and I walked there and went in to sit, reflect and pray. It was a beautiful church and I felt refreshed after spending some time there. I made a promise to myself to go back today for their service. Late yesterday, Darren's gastroenterologist came in to say that there had been some blood in his stool, and they were thinking of doing an upper endoscopy. I was quite concerned about the procedure not interferring with his schedule (since so many other things had already), and the Doctor assured me they would take that under consideration. So, they decided they do it this morning - Sunday! Well, since he had to be in bed anyway, and nothing was going on, why not? He was on a "no food" alert to prepare, but the nurse inadvertenly gave him the blood thinner injection, and then they couldn't do the procedure! Oh well, the Doc came in to say that he'll just watch him closely and see what happens. But since I had gone to Church, I didn't know the whole thing had been cancelled. I was waiting for word that everything went well. In Church, I was praying that the procedure would go smoothly with no complications (even a routine procedure has more risks now) and that God would heal his thumbs. I have decided to focus on small, specific prayers. Since Darren is taking baby steps in his healing, perhaps God can do the same. Having use of his thumbs would be SO huge and helpful in his quest for independence. Maybe all of you who are praying for Darren can focus on that as well. Think thumbs!!! Well, Darren and John are ordering in sushi for dinner; Ari and I are going out. I look forward to spending some one-on-one time with her. It is so hard to be separated. We have a busy week ahead of us, and my Mom will be coming tomorrow when John and Ari leave. She'll be here til Thursday, and I look forward to her visit. Thanks for the USTA tennis items (are they signed by Sarge???) and the Mets stuff. All really cool items - more to decorate the room with! I hope all those who celebrated the Jewish holidays are refreshed and renewed in their faith. Thanks for adding Darren to your prayers. With love and hope for recovery, Cynthia

September20

Well, this is the short list for a different kind of update. Last week, Shelley asked me how I was. Not that others (including most on this list) haven't asked me as well. It just took the right frame of mind to tackle the subject. And she wasn't looking for the kind of answer I write in my updates. It was difficult, but I decided to answer her. Here is what I wrote: (I hope it all copies OK from e-mail to Word and back again - no promises!). But you'll get the gist of it, I'm sure.

So how are we - really? Well, you are a friend who really cares about that answer, and certainly I don't reveal ALL of my true feelings in my updates. But I can and will here, since you asked. The answer is not pretty, but I know you weren't expecting a pat answer. Be prepared with tissues. As I am crying while writing, I know you'll be crying as you read. This all SUCKS. There is no way around that. I was never one to complain before. I had a very nice life - all that anyone could ever hope for. A wonderful, loving husband. Two beautiful, healthy, bright, caring children. Anything material I ever desired, and more. As close to perfect as anyone could describe. We worked for what we had, and were grateful to all the opportunities that came our way over the years. Then THIS. It has changed our lives (and friends like yours) forever. The words the Doctor said that first day (your son's neck is broken) did not even begin to describe what a spiraling hell we would be falling into.

The question "why?" is never farther than just below the surface. I try not to dwell on it, but try now to ask "how?" But it isn't easy. Every minute of every day is different now. The amount of dependence is unimaginable. It breaks my heart to be rejoicing at Darren brushing his own teeth when he was a weightlifter; struggling to push a manual chair when he was a big, strong hockey player. I could go on and on. It feels good, in a way, to release this pent up anger, and I do that, but its mostly to myself, in bed, late at night when no one can hear me. Who wants to hear me complain anyway? The setbacks, the fevers, the infection, the blood clot and more are all superficial, really. The injury is just so devastating. Perhaps its just today - seeing Darren get out of bed after lying there for 3 days, then not feeling well because he did too much, too fast. Having to rest and then get up again. God knows he's trying; he's doing as much as he is able. Will it be enough? Will the spinal cord swelling decrease? Will he regain feeling? Movement? The uncertainty is unbearable. Fear of the unknown is tremendous. Will he recover in a year? Two years? Ever??? If I sat and thought about these kinds of questions on a daily basis, I would have to be hospitalized as well. And probably heavily medicated. Who could function in that state of mind? So, instead, I focus on the small triumphs, the challenges, the baby steps. I am thankful I still have Darren, not a brain injured child. I am thankful we are in the right place, getting the best care. These are the things to focus on, the things that keep me sane. The attitude that gets me through each day. The outlook that says to Darren "we can do this." I am thankful for the friends who truly do care how I am feeling, and will listen to the answer. Thankful for those same friends who give me hugs and say the right words to comfort me. And thankful to those who just listen to me cry. Each day brings a roller coaster of feelings. Focusing on the highs, and just getting through the lows, is my day. Does it get easier? Sometimes. Sometimes its not so easy. But dwelling on the lows is definitely not the answer.

Wow, I'm not sure if I feel better or worse after saying all that. I do know I'll keep this as perhaps my first entry into a journal I haven't started yet. Maybe even send these same words to my closest friends who really want to know "how are you?"

I just realized that you also asked how is Darren - really? I have to honestly say "I don't know." I try to talk with him, but it usually turns up being superficial. When I do ask him, I get so emotional myself that I don't think its that beneficial. They do have support groups here with the kids, and individual counselling if desired, but Darren hasn't been interested as of yet. I am still working on him to explore that possibility. I think it’s a very important piece of his road to recovery.

September 21

Hi everyone! Its been 2 busy days here. Darren hasn't been feeling as well as he did last week, but he's resting when he can because the rest of the time he's pretty busy. I'll try to fill you in. Yesterday, our day started with OT family training bright and early at 7:30 am. First a shower, where Darren was able to do quite a lot himself. But its a chore, and tiring. We all think of a shower as refreshing, but right now its more work then pleasure for Darren. But I know that will get better. After the shower, Darren worked on dressing himself again. Each time, it does get easier, but that too is work. Then we went through all the arm exercises and range of motion movements for his upper body. Up to eat breakfast, brush teeth and into the therapy kitchen to talk about eating, cooking, reaching foods, etc. Pointed out something interesting things we'll need to think about for home.

After lunch, during his afternoon PT session, he worked more on transfers and tried out a "power assist" chair. He liked it, and it was much easier going thru the hallways and up slopes. It was still work, but good to try it. I was so exhausted last night that we left around 8pm! That was a first in a LONG time. But I went to sleep early and slept well, ready for today's airport trip! When we (Mom and I) arrived this morning, a former patient was here visiting Darren. A guy about 40 or so, that had a similar injury to Darren, was here 2 years ago, as a quad (quadriplegic) and is now fully recovered. Another miracle!

The outing to the airport started out at 9am, and we were at the airport by 10. The Delta personnel were wonderful, and told us everything we would need to know from arriving to checking in, going thru security, etc. They had trained personnel to lift the patients from their chairs, put them on an "aisle chair" and then into the seat. Quite a feat for someone as tall and as heavy as Darren. And he wasn't the only big guy. But they were very good. The therapists with us stressed how important it is to convey your wants and needs clearly and specifically to avoid problems. The trip was very thorough and I learned a lot about what I'll need when we fly home. It was tiring for Darren, though, getting around in a manual chair. He was able to do some on his own, but we pushed him a lot, too. When we got back to Shepherd, he needed a nap! But the nap was a short one, because we had a family conference with the case manager, OT and PT therapists and a nurse. We covered goals and expectations for the next 3 weeks, and what we might anticipate in the Day Program (outpatient). It was a worthwhile discussion. Tomorrow is going to be another busy day. First, Darren gets into the pool - yea!!! He's looking forward to that. I'll be getting in with him as well. Then we'll meet with the Day Program case manager before starting several sessions of family training for PT - lots of transfers.

Well, this was a long one since there is so much happening. My mom is glad to be here, and see all that Darren is able to do and what Shepherd offers. I'm expecting to see my brother Tim and his wife Andreia this weekend, as Tim has business in Atlanta. Since Mom leaves tomorrow (Thursday), I'll have more company shortly. And we'll all be glad to see each other. Enough for now! Time to get this room straightened up, and let Darren rest. Good night, and please continue your prayers. Love Cynthia

September 22

Hi Medora, sounds like plans for the October weekend are coming along. Good. I'm glad you can all come together. Sorry I will mis you the weekend I'm coming home, but when do you actually leave? I'll be home on Thursday afternoon (Sept 31st). Maybe I can see you then?? Regarding fund-raising: Cheryl Coutts is planning that their annual casino night proceeds partially benefit Darren. I am still in awe of their generosity. Diane McIntee has been working with Cheryl on that. Also, Dave McIntee and Ed Morba are talking about a spring golf outing. Diane suggested we think about setting up a fund for Darren. I think I'll talk with Sue Struble at Lakeland Bank about the idea. I'm sure she can give us some guidance. So you ask how am I, really? Well, Shelley asked me that the other day, and I decided to really answer the question. I think I am going to send it off to you and a few of my closest friends. Its definitely not for the general e-mail distribution list. The short answer is that this all really sucks. There is no way around it. It is depressing, frustrating, scary, overwhelming and lots more adjectives I can think of. But instead of reiterating it, this will prompt me to send it a few of you. I'm sure you understand that its the easiest way. In the meantime, we are hanging in there, doing what needs to be done. Sometimes its with smiles, other with tears. But its all with love and support. That is the key. And still, I draw my strength my from all of you. Love Cindy

September 23 & 24

Hi everyone, I really wanted to write this update this afternoon, for all of you who get your e-mails at work, but I just couldn't get to it. Sorry, I tried. OK, another 2 busy days, and today's schedule was written out to be all that busy. But it was! I'll try to start from yesterday morning - Thursday. First was a session in the pool, which we both enjoyed. Grandma got to watch and took pictures. The water was really warm. A lot of stretching and relaxing. It was really good. I was "checked off" on assisting him, so I can take him in whenver we have time. Then I had "PT Family Training," which consisted of "me" and the therapists. It was a LOT of physical work. First was transferring Darren to and from his manual chair with a manual Hoyer lift, then learning to manually transfer Darren in and out of a car, first with a manual Hoyer lift, then on a sliding board. I was sweating, to say the least. It was really hard, but the instruction was excellent, and they said my size helped me (imagine that!). I could fit into the smallest of spaces between Darren and the car, sometimes leaning through the open car window. Then it was into the garden and pushing his chair through the grass and onto uneven surfaces, then up and down t he ramp. Then the biggie - up and down stairs! That was HARD and I was nervous. So was Darren. The therapists and Darren were all surprised at my strength, as was I. I am really not that strong, but using the right techniques are key, and also "doing what you have to do."  As if that weren't enough, into the PT gym, to get him onto and up from the floor, again with the manual Hoyer lift. That was hard, too. At this point, I was looking for the Aleve! I knew I was done! And we didn't even cover everything; still 2 more jobs to learn: range of motion exercises and transfers from chair to mat and back again. Why they don't start with that, I haven't figured out. Oh well. Back to the room for dinner, and we learn that Darren is moving rooms - again. They did give him the choice, but Darren's roommate had a new infection, so one of them had to move. So if we weren't tired enough, we packed up the room and moved back next door, to his original room. We went for dinner, and I promised Darren that in 15 minutes after we returned, I would have his bed cleared so he could get into it. It was done, and while he was getting settled, I had the room all put back together, with the exception of things to hang high up on the wall. I wanted to take a picture while it was in the chaotic stage, but I forgot! Today, I finished it all, and you would never know we moved only yesterday. Then we watched the Apprentice together. Whew! What a day!!! Two Aleve and a good night's sleep, and I was good to go for the next day. Darren said that I did a really good job on all that I learned, and he was proud of me. That felt good. Friday - started off with "seating clinic" to discuss wheelchair options. Too much information, too many decisions, and not enough time. We don't have to decide right away, but we need to order his chair in enough time to have it when we arrive home. So we have to discuss it more. Late this morning, my brother Tim and his wife Andreia arrived for a visit. Tim had to go right off to a meeting, but Andreia stayed and watched his therapy. Then lunch, then afternoon OT before Darren went to the gym for the Nu-Step machine. This time, he stayed on for 20 minutes, did it at a higher pace, and really pushed his last minute. He was tired, but he felt good. Now Tim came back, and after hanging out for a bit, we were cleared to ALL go out for dinner - YEA!!! We took Darren in his manual chair to Friday's, and really had a nice time. It was great to be out, and to take Darren. A little tough getting to and from, but we managed. The uneven surfaces made Darren's legs spasm, and they wer e jumping all over the place. Now we are back in his room, and they are watching a baseball game as I write. They are chatting away. Tim and his clone.....it is great to have them here. A bit of quick info about our plans here in Atlanta. Right now, the discharge date from the inpatient stay is October 12th. Then we move into an apartment either across the street or down the street, and Darren comes to Shepherd as an outpatient Monday to Friday 9 am - 4 pm. It is a busy and intensive "Day Program." Outside of those hours, I will be 100% responsible for his care. A little scary, but exciting, too. I think we'll be in the Day Program for about 3 weeks, but it could be a bit longer. Our goal is to be home for Thanksgiving, and what a holiday I am dreaming about. Hopefully, that will happen, and I feel confident that it will. Darren's spirits are excellent, and his determination continues. I am so proud of him.

Please check the picture site for new pictures (thanks John and Ari!), and don't forget to post new messages. Also, keep the cards coming - we still love to get mail! Thanks for keeping in touch. With love and prayers, Cynthia

September 25 & 26

Hi everyone, another weekend coming to an end here at Shepherd. One not-so-good day, one good day.

Happy Holidays and Happy Yom Kippur (I hope that's the correct phrasing) to all my Jewish friends and their families. I hope you enjoyed your holidays and feel renewed and refreshed in your faith. Saturday morning didn't start off so good when Darren didn't feel like eating much breakfast. One of his medications has to be taken on an empty stomach, others on a full stomach. But he needs to eat in between. He didn't feel like it, and by the time he ate lunch, he was starved, but wound up throwing up everything he ate. Yuck. After that he felt better, but for dinner I only gave him some broth and noodles. He kept that down OK, and felt better. During the day, he had almost 2 hours of PT, longer than most Saturdays. Some of the time was spent teaching me more about the transfer, other time was because the therapist was working with several patients at the same time. Tim and Andreia watched the whole time, and were impressed with what Darren could do. We also spent some time outside in the garden, just chatting and catching up. This morning, I walked to the same Church I went to last week, and again, it was a great walk to and from and a very nice service. I'm glad I went. When I arrived at Shepherd, Darren was eating lunch, and had been feeling good all morning. We went outside, and Darren was on the phone quite a bit, catching up with friends. Then we went to check out the Vintage Car Show in the parking lot. They had some pretty cool Packards and Cadillacs, most in excellent condition. We took some pictures, and chatted with other patients and families. I won't be able to post the pictures for awhile, but I'll let you know when I do. When we came inside, some of the boys started a poker game in our room, and it was quite a lot of fun. They had a good time. I had a good time listening and watching, too. I learned that PT REALLY stands for physical terrorist or pain and torture! And it was fun to watch the boys use their hands to manipulate the cards and the chips. The table is still set up; maybe they'll still play a little tonight. Their OT's would have been proud of them! Tim and Andreia visited some friends last night and most of today, but they were able to stop in for an hour or so before their plane took off tonight. It was good to get in some more good hugs. Well, this coming week will not be as busy as last week, but still a full schedule. I will be using some time tomorrow for phone calls to insurance company, equipment vendor, etc. Stuff that NEEDS doing. I am coming home on Thursday til Sunday night, so I'll try to make plans with some of you. As much as I can squeeze in while doing what needs to be done.

On Sundays, I feel renewed and refreshed, ready for another week. And I'm looking forward to coming home for a few days to get all those hugs I've been promised! With hope, love and prayers, Cynthia

September 27

I've been staring at the computer screen for a few minutes, not knowing how to start tonight's e-mail. Nothing new or exciting happened today, I guess that's why I don't know where to start. It doesn't feel like I have much to say, I guess. I started my morning with phone calls to the insurance company, various county and state offices to see what benefits may be available and the medical helicopter company that transported Darren (twice). Then onto the program people here to see what happens next. As much as I hate to admit it, the insurance company MIGHT get the last word on how long we stay here. I will fight for what I believe we need, but who knows what will happen. While I was busy, Darren went up on the tilt table at PT. I can't believe I missed it! He got up to 70 degrees, which was really good. And he didn't get dizzy. They also worked on his shoulders quite a bit. They have been really sore, and it seems like he's losing strength, but its from using his manual chair. It just seems like 1 step forward, 2 steps back. It also seems like tasks he's been able to are now more difficult. The Doctor says "no pain, no gain." But its tough to watch. Darren was supposed to go the Braves/Mets game tonight, but the weather cancelled the trip. The game might still have been played, but not good for these guys to be out in that kind of weather. Oh well, would have been fun for him, and a night off for me, since I wasn't going. So I'm still here, but getting ready to go soon. One of the boys had a nurse make them PB&J sandwiches, and he brought one to Darren, so its snack time right now. Smells good.....you can tell I've been eating hospital cafeteria food waaaayy too long........ Darren said tonight that we've been here too long. Well, we have another 2 weeks to go, so we have to hang in there. Keep the cards and e-mails coming, they'll help us get through. Have a good night, and keep us in your prayers. Love Cynthia

September 28

Hi everyone, another busy day here at Shepherd. There were "classes" for me today: therapeutic recreation, wheelchair maintenance and emotional issues. All had some worthwhile information and some useless info, too. You really have to be your own advocate in finding out stuff, though. As much as they try to cover, there is so much going on, that if you don't ask, you don't know. Especially with the wheelchairs. The "seating clinic" is such a busy place, its hard to get the info you need quickly. And while there's a lot of info on the internet, its hard to decipher and compare. Oy! (As my friends say).

Today in therapy, Darren was sitting on the edge of the mat, supporting himself. He was able to catch a ball while keeping his balance, but couldn't throw. But that is improvement! He is really hoping to get some "abs" back so he can balance himself. I'll have to go and watch so I can take some pictures. And in between my classes, I went it to see what he was doing, just in time to do a transfer from the mat to his chair. That went pretty well. He can help quite a bit, so its not all me. And the therapists assure me he'll be doing more and more of the work as time progresses. His PT was also encouraging Darren not to look at progress day to day, but week to week, and task by task. A good reminder to keep working and not get discouraged or frustrated. Volunteers came to give patients haircuts today, so Darren has a new buzz cut. A little shorter than the first, but it looks good. He was also at the gym again today (I think I forgot to mention he was there yesterday in the update) and tried the V-glider, a cardio machine. He didn't like it as much as the Nu-Step, but still good to work out. I'm looking forward to being home for a few days. I'll try to keep you updated as best I can; maybe John will help? We'll see! Be prepared for a lull in communications, just in case! With love, hope and prayers, Cynthia

September 29

Hello everyone, another night of Apprentice - a date with Darren! So that's why this is late. Before the show started, we went to the gym to watch some wheelchair rugby. Those guys are fierce - checking with their chairs!

Some more PT training with transfers and range of motion with Darren's legs. Those therapists know all the tricks to make the exercises easier. Thank goodness, because his legs are HEAVY. But the exercises are so important to keep him flexible and limber. And he's getting better with the transfers, doing more of the work himself. On the first one, I did all the pulling, until I was told to let HIM do the work! Good idea!! The next one went much easier, and he did more of the pushing. Julie Kramer and her son Alex stopped in today for a visit. It is always great to see them, and we made plans for another get together. They are going to lend me a car to use for our move to the Day Program, and I am SO grateful for their generosity. What a huge help it will be to get groceries, move stuff, etc. I am so lucky to have them close by. There's something special about reconnecting with old friends, especially good for the boys, too. We are blessed to have so many friends helping us. John arrived safely tonight, and I look forward to going home tomorrow. We'll see what happens with the updates, but I'll do my best. I will be posting new pictures on the website in the next day or two, so be sure to check them out. And don't forget to post a message; Darren has been checking it pretty regularly. I look forward to seeing some of you at home. For all the others, our return home is not too far away, and we'll see you then. With love and prayers, Cynthia

September 30

Well here goes, my first update! I arrived at Shepherd last night so that Cynthia could finally go home for a few days. I am happy to be here both to see Darren ( it has been over a week ), and to give Cynthia a break from being here. The days here are long and difficult for Darren, and for us as well. Today started out early for Darren with a shower, and when I arrived, he was just starting breakfast at around 8:30.

Today was early PT day with it starting at 9:00 and going to 10:30. Today was the first time that I spent almost the whole time in PT with Darren. It is very difficult for him, but he tries so hard with everything that is asked of him. It really puts things in perspective for me on what a difficult road we have ahead of us.

Right after lunch at 1:00 it was back in the gym for OT, I stayed there for almost of that too. Aagin, everything was difficult, but Darren gave it his all. We had a little bit of a dissapointment as the scheduled pool session at 3:00 was cancelled. Apparently thet had to clean the pool and all activities were cancelled. Tonight there is a "fishing trip" scheduled, but Darren has elected not to go. Many of the young men here are very interested in watching the debate tonight, Darren included.

I am writing this update early so that I can watch the debate too with Darren. It is only around 4PM and Darren is resting before he has to go at 5PM for a bladder test. Were not sure why, or who ordered it, but it is being done.

Before I finish up, I just want to send a special "THANKS" to Tom Mongelli, who has started our home renovations and is really moving it along in the hopes of being close to finished by the time we bring Darren home. I appreciate all of your help Tom.

I will try to be diligent in Cynthia's absence and actually write the daily update, let's see if I can follow through???

Thanks for all if the support you have all given us and Darren,

John

October 1

Today started with a 9AM seating clinic to have Darren fitted for wheelchairs. The idea is to have insurance pay for the power chair.  They go up to $30,000 and we will have to pay for the manual chair.  Darren was measured in many ways, some that I would not have thought of, for proper fit into these chairs. The idea behind having two chairs is because when Darren is away from home, he will probably get very tired in a manual chair. Hopefully, if he is able to go to college, the power chair will enable him to get around the campus.  The clinic lasted about an hour and a half and afterward, when I was walking with him to therapy, I could barely hold back the tears. I tried not allow Darren see me.  I don't think that he did.  It was incredibly difficult for me to sit through the clinic because the grim reality of the huge challenge we are all facing is becoming quite clear.

The clinic went far longer than we expected and really cut into his scheduled therapy time. By the time we got to the gym, there were only 15 minutes left in Darren's time slot.  So Darren, being Darren, asked if he could get started and at least get in the 15 minutes. He got started and then had Judith show me how to help him with the stretching exercises, so that he basically got in the whole session. It was nice for me to get to help him as well.

After that, Darren went to art class. I am not sure what happens there.

In the afternoon  Darren had a 1-1/2 hour OT session. He is working so hard and wants to succeed so badly. At lunch we talked about how much all of the things we need are costing. At the seating clinic Robin was telling Darren that the manual chair that he liked was the most expensive one they had. It is made of titanium which is why it is so much more than the others. He looked at me, perfectly willing to settle for less (typical Darren) and asked me what I thought. I told him to order what he thought was best, which really pleased his therapist. I thought he was going to shed some tears, and I think he came close, but he didn't. He really realizes what an impact this is going to be on all of us. Anyway, after our little conversation, I told him that the only thing I wanted for spending all of this money was the opportunity to throw all of this stuff away someday because it was no longer needed. He concurred. I think that this is enough writing, except for one more thing ---

I am very excited about tomorrow. Alex Kramer is supposed to come and visit with Darren again. Alex lived in Kinnelon 10 years ago and they were very good friends then. It is nice to see them renewing their friendship. Also, I have arranged for a very special overnight visitor for Darren tomorrow (not anyone famous). We will have the afternoon together, go to Friday's with his favorite nurse Charlie to have dinner, and spend a little time on Sunday morning as well. Darren will be surprised because he doesn't know at all. In fact (Arianne), I can keep a secret because you don't know about this and neither does your mother !!!!!! So you'll have to wait and see too !!!

Thanks to all of you who read these updates, and keep us all going.

John

October 2

In case you all haven't figured it out yet, I do not do this update all at once. It is ongoing during the day. That way I can put things down as they have happened making it easier to remember. It also is much easier for me not to write it all at once.

Last night Darren had to have another ultrasound on his legs. The doctors suspected that he may have had another blood clot. I was relieved that the test was negative. Blood clots are pretty scary; they can kill you if they get to the heart. Darren is being put on Lacics (not sure of spelling) to try to get the swelling down in his legs and feet. I am a little excited to see that Darren is beginning to get spasms in his legs. Spasms sometimes mean absolutely nothing and they can be painful, but sometimes they are the precursor to getting some movement back. I am really trying to be optimistic that it could be the latter.

Today was a 'sleep-in' day like every Saturday and Sunday. The morning is kind of lazy, and I am starting this update while Darren is at his Saturday PT session. There is only one therapy session on Saturdays, and none on Sundays.

11AM -  I am anxiously awaiting the arrival of Darren's 'special guest', Sean Spiller. For anyone who doesn't know, Sean was Darren's hockey coach for his first 2 years playing for KHS. In my opinion, Sean has been one of the most influential people in Darren's life as far as motivating him to always do his best, try harder, and never quit. I saw Darren get so much 'tougher' under Sean than he ever was. I asked Sean a couple of weeks ago if he would come down for a visit, and he was only too eager to do it.. I truly appreciate it, I know it will make Darren's day and give him some motivation. I expect Sean to arrive about noon, and I will be sure to disappear for a while to give Darren some private time with him.

3PM - Coach Spiller and Darren are sitting in the garden chatting. Sean arrived around 1:30 and we were already in the garden. Darren was fooling around with his IPOD and didn't even see Sean come in. So, Sean walked right up to Darren and stood in front of him. Darren looked up and said, "Oh my God." He was so, so surprised and so happy to see Sean. He has been going 'a mile a minute' ever since. I decided to leave for a while and give them some private conversation time. Sean's effect on him is so positive. He is telling Sean about his college plans in the future, and how hard he plans to work at rehab. I was having a very hard time keeping the tears from my eyes.

9PM - Darren, Sean, Charlie (Darren's favorite nurse) and I just returned from a really great dinner outing at Fridays. All went smoothly, the food was really good. Good night and thanks for keeping up.

Thanks to all of you who read these updates, and keep us all going.

John

October 3

11AM - We just finished saying our 'good byes' to Sean. It was a bit emotional for both of them and for me as well.  I had breakfast with Sean earlier and he said that he felt that Darren was really doing great as far as his attitude towards our situation. He told Sean that he knows that he has a long and difficult road ahead, but he is up for the challenge.

The dinner last night couldn't have gone better. Darren really enjoyed his time away from the center, and having both Charlie and Sean just made it extra special. Darren ordered Jack Daniels Triple Combo (chicken, ribs and shrimp) and he finished it all, and some mozzarella sticks as well. This morning Darren and Sean talked about going to a few Devils games this year (if there are any) and Sean would really like to go with him, which I would love to see happen. We also talked about the possibility of Darren taking one of two college courses on-line just to 'stay in the game' as Sean put it. I think that this would be a very good idea and Darren does too.

Today, Alex Kramer is coming at 1pm and we are going to hunker down and watch the football games. The Jets are on TV here for the first time this year. What a relief not to have to watch the Falcons again today. There is no therapy on Sunday, so it is a free day to just hang out and do nothing.

9PM: The day went as planned. Alex came and Darren had a nice visit. There will be no update tomorrow, as I have to come home and Cynthia will not arrive here until late tomorrow night.

Thanks again to Sean for taking the time to visit Darren. It was a really nice surprise for him. He told everyone that he spoke to today about it.

Thanks to all of you who read these updates and keep us all going.

John

October 5

Wow, I go home for a few days and its October!!! How did that happen? I thoroughly enjoyed my time at home, especially being with Arianne. That is such a tough part, being separated. But we know its for the best, we just have to get through it. I look forward to her visit this weekend, along with my sister, Michele and Medora Regan. A "girls" weekend (plus Darren)! We will either have moved into Day Program (possibly Friday now) or getting ready to move on Tuesday. The insurance company is calling the shots, and I think I will fight for more time in Day Program vs more time in Inpatient. Picking my battles, so to speak. We'll see what happens; we are prepared for both. I was so proud of John, doing the updates and arranging for the surprise visitor (former hockey coach Sean Spiller) this weekend. He did a great job, and I know he didn't want to go home.

It was SOOOO good to come in and see Darren this morning. We had a long hug and lots of "I love you's" and "I missed you's." He didn't have therapy til 10:30, so it gave us time to catch up and exchange stories about the last few days.

In PT, I was learning chair to bed transfers, and vice versa. It was a little hard, but certainly do-able. Darren looks forward to not having that hoyer net under him all day long - another sign of independence, or at least less dependence. Progress. Now for the BIG NEWS - Darren is now moving his ring finger on his right hand!!! This is brand new movement!!! I was so excited, I was kissing his head, kissing his hand, and hugging Tari, who happened to be in the room when he told me. He said "its only a finger..." And I said "wow, its a FINGER." And it moves more than the 2 fingers on his left hand. In OT this morning, they were testing his arms, shoulders, fingers, and there it was - movement!!! Darren describes his right side as "nothing." Its weaker than his left side, no tricep either. And now a finger! I think this is SOOO positive. Some kind of communication is getting through. God is answering our prayers. With LOVE, HOPE and PRAYERS, and thanks to all of you for your unwavering support, Cynthia

October 6

Hi everyone, another busy day at Shepherd, but in a different way. Looks like Darren will be discharged on Friday, which is the day after tomorrow as I write this - Wow! I can hardly believe it. We have been at Shepherd for 9 weeks as of yesterday. Seems like a blink of an eye and an eternity, both at the same time. Now, all of a sudden, there is just SO much to do! Insurance questions and conversations, orders for "Durable Medical Equipment," buying supplies and medications, getting groceries, packing up, unpacking, and more. I am a little anxious about the whole move, but excited, too. I know the apartments are small and quite spartan, but its an "apartment" where Darren & I will live together. An improvement over hospital living. Except there are no nurses, no helpers, just us. But I think that will be a good thing in the long run. Thank goodness I will know my neighbors!! Today, the Kramers delivered their car to me to borrow for a few days. What a huge help! It is SO generous of them, and the timing worked out perfectly. Now I can move all this stuff, buy groceries, etc. Maybe we can even figure out how to get Darren in and out of it! We'll see.... PT and OT sessions were pretty run of the mill today. During OT, more testing was done on Darren's sensory reactions to sharp and dull (using the very scientific safety pin tool!), but in the little I observed, I saw no difference than before, and I really couldn't watch much. It was upsetting to see that there was no change. In PT, they had "group" which Darren usually enjoys. That's when they do more interactive activities with each other than individual therapy. Fun, but it means I'll have to do his leg stretches tonight.... Right now (6:30pm) there's a pizza/movie party going on with the kids and the therapists. Tonight's movie is Office Space, one of Darren's all time favorites. I'm sure I'll be hearing lots of those now familiar lines for the next few days. I'm sure it will be fun for all of them. Later on, we are supposed to go and visit Paul, one of Darren's former roommates, who has been in the Day Program and who's going home on Saturday. I am really going to miss him and his Mom; they are both wonderful people. Paul's mom is going to try and get Darren in her car (a jeep, I think!) to show us "how it's done." Then we'll see their apartment (not the same as where we'll be) and get any and all tips they can give us for the Day Program. It will probably be a bit of a late night, so I figured I better do this update now. Then Darren has OT dressing early tomorrow morning, and I'll start packing up his room. When I sat down to write this e-mail, I didn't think I'd have much to say about the day. I guess I was wrong! I'll try to keep you all as updated as possible, but I know you'll understand if communication falls off a bit while we figure things out in "Phase 2" (or is it 3 or 4 by now???). Keep the faith for us, Love Cynthia

October 7

Hi everyone, we are finishing our last full day at Shepherd. Darren gets officially discharged at noon tomorrow (Friday). I can hardly believe it. I was so ready to leave Jefferson after 10 days for the next step, now we are ready to leave inpatient after 9 weeks (I think.)

I forgot to tell you yesterday that Darren transferred out of his bed into his manual wheelchair in the morning and stayed the whole day in his chair before transferrring into bed last night. Staying in his chair the whole day isn't the story, though. Its because he was able to resnfer, he didn't need to wear the Hoyer net under him the whole day. So much better not to fuss and mess with that net the whole day. Yea!!! Today was early morning dressing with OT, and they said Darren did quite well, better than last time. We'll see how that goes when we move out. Practice makes perfect, as they say. It was a pretty quiet day, as afternoon therapy was skipped since Darren and Talbot went on an outing to a wheelchair tennis tournament. It must have been prelim matches of some sort, since the tournament is this weekend and not many other spectators were watching. But Darren said it was pretty cool, and the guys hit the ball really hard. And he had fun being out with just Talbot and the therapists. They finished up with dinner from Chick-Fil-A. While he was gone, I started packing up, and putting things in the car. Then I did some grocery shopping in preparation for the move. Felt good to prepare for a more "normal" routine. My range of emotions was all over the place today. Sad and happy, nervous and excited, and they kept changing. I had to keep reminding myself that things WILL get better than they are today, how thankful I am that Darren is doing as well as he is, and that his spirits and determination are still strong. But intermixed with those feelings were anxiety about the upcoming responsibility. The day got better as it went along, and now I feel quite ready for the move. Wish us luck, keep praying and keep in touch. I couldn't do all this without your support. Love Cynthia

October 10

Hello everyone, I don’t know where to start! Its been a whirlwind few days. I’ll try to remember it all. We are now at the apartments provided by Shepherd for their Day Program patients. Internet connections are not set up, so I will be typing the updates in Word, then do a cut and paste into e-mail. So if things don’t look quite right, like punctuation, that could be why.

OK, Friday we moved in. We had a carload of stuff; thank goodness Darren could take the bus over! I didn’t have any room in the car for him, nor would I have been able to get him in and out myself. But I got all the stuff in, at least. Then we walked/pushed up a pretty big hill to get to Mick’s Restaurant, where another patient was having a birthday dinner. We wanted to be on our schedule, so we ate dinner a little earlier than the party, then just joined them for a few minutes conversation. Back down the hill (VERY carefully since its now dark AND steep) and to the apartment to wait for Arianne, Michele and Medora. They arrived around 10. Ari went to see Paul, a Shepherd patient, who was leaving for home Saturday morning. We visited a while then started the night time routine. It wasn’t too bad; we just took our time. The sleeping routine is going to take some getting used to. Only short amounts of time in between care.

Saturday we went to the Botanical Gardens, which is only a short distance away. It was a little overcast, but nice enough to be outside. The gardens were very nice, with a lot of glass sculptures by Chihuly. We really had a good time. The car transfers were tough, but do-able, especially with all of us helping. It was especially tiring for Darren, but he is getting stronger and able to help more. It was work for all of us, too! That night we got take-out for dinner, and just hung out at the apartment. We got started on the night routine, which included a shower, and I think it all took about 2 and a half hours. It went well, and we didn’t have any problems, but I was so physically and emotionally drained., that once Darren was all set in bed, I just sat and cried. He hug me and rubbed my back, with us both agreeing that we had done a good job and it would get easier. Michele and Medora consoled me, while Ari went in by Darren. There were lots of hugs, tears and tissues. The

night routines went smoothly, just not much sleep.

Today, we headed to the mall for a late lunch and some strolling/rolling around. We ate at a very nice outdoor  restaurant, just enjoying the food and the company. It is just so good to be out of the hospital and doing “normal” things. Back to the apartment, to get our visitors back to the airport. We all realized how much planning and attention to details are needed for any kind of excursion. It was all worth it, though, and we got lots of good practice with car transfers. At one point, (was it the transfers or the shoulder massages?) that Darren said “you guys are all staying for 2 weeks, right?! Wow, wouldn’t that be nice!!! Well, its good to progress to the next step, but this is going to be hard. All I have to keep thinking is “this WILL get easier/better” because I know it will. As long as I get afternoon naps, that is! One final thought: when I packed and moved, it became very evident how much STUFF we have accumulated! I don’t mean this in a negative way, but please don’t send any more packages, food, gifts, etc. Whatever gets sent, we have to get home! If there is anything you’d like us to have, please wait for us to get back to Kinnelon. It will just be so much easier! I know you’ll understand. With love, hope and prayers, Cynthia

October 12

Hi everyone,

I have a quick few minutes to write an update from the Library while Darren is in therapy. Everyone had Darren starting in the Day Program on Monday except the person who schedules the therapists. So, yesterday and today are sort of "transition days" where they have scheduled a few things to keep him busy and allow me to rest. Yesterday, while we wasted quite a bit of time waiting for a Doctor's order to have a kidney ultrasound (already a frustrating experience), I received a phone call saying Darren would not be starting in the Day Program til Wednesday. I said "that can't be" and went to that office when the ultrasound was finally finished, 2 and a half hours later. On top of this, I had been very unhappy with Darren's loaner wheelchair from the vendor, and was trying to reach the sales rep. Needless to say, when I was pleading our case for the Day Program to start TODAY, and not having enough sleep to begin with, I lost my composure and broke down. It was just too much a ll at once. So we worked out a compromise, and today was a much better day. He had a few hours of "therapy" with a technician yesterday, a session at the gym this morning, and another few hours this afternoon, including time on a "rickshaw" exercise machine. So all is not lost. And the vendor is coming this afternoon with a different loaner chair. So we'll see how that goes. As they say "tomorrow is another day" and that was certainly true to get through yesterday to today. And I look forward to that being true tomorrow, and the next day, and the next day after that, etc. We are trying to get a routine of having dinner, relaxing, bathing, personal care, and sleeping. I know it will get easier, but the short, interrupted periods of sleep are what's going to be tough. I may not need a lot of sleep, but I do like it to be in one stretch! That's not possible right now, so naps are in order. And I soon as I finish this, I'll be heading back to the apartment to do just that. In the meantime, we are both doing our best, and acknowledging each other's efforts. It feels like Darren has reached a plateau, but from what everyone tells me, I will see a lot of change in the Day Program. Darren is ready to work hard, as usual, so I'm sure there will be progress in the next 2 weeks. Then it will be time to come home, and we'll be ready! Boy, will we be ready!!! As soon as I know what the timeframe is, I'll be letting everyone know. Please continue to keep us in your prayers, Cynthia

October 13

Hi everyone, I am SO HAPPY to report a bit of good news today – Darren’s right tricep, which has been non-existent until now, is “firing.” YEA!!! He always had a bit in his left, which has gotten stronger, and now that he has a bit in his right, they can start stimulating it and making it stronger, too. That is SUCH good news. We were happy with the Day Program OT evaluation today when the therapist found that, and had me look at it to see for myself. Darren was very surprised (pleasantly) but also disbelieving. “Where did that come from?” he asked. Well, things change, the therapist said, and today you have a right tricep. I got worried at lunch when another patient said that some days he has a tricep and other days he doesn’t, but hey, at least it’s there! Now they’ll get to work on it. After a days worth of evaluations and meetings, the therapy team thinks Darren would benefit from 6-8 weeks in Day Program. But I know insurance is going to be pretty stubborn about giving us more than 2 weeks, and I’m ready to fight for a third, but after that, we want to get home and go to Kessler for more. They think Darren has “a lot of potential.” I agree, and if we didn’t have Kessler at home, I might be willing to reconsider, but I am real sure we both want to get home for a variety of reasons, especially to get our family back together. Well, we are figuring out this routine, and I look forward to the weekend when John will be here to help. That will be so good. And I’ve rented a wheelchair accessible van so we can get around and do things, too. It will be a lot easier than making transfers, although that went well with all the help we had! (Thanks to Ari, Michele and Medora!!!) And we were able to get out and go places! Thanks for all of your support, and keep us in your prayers – obviously they’re working!!! Love Cynthia

October 14