Just A Regular Day

July 28, 2008

Today wasn’t that eventful we just played with Shira around the house, the usual routine that kids like to do through the day: lots of reading, art, playing with toys, side lying, standing in the standard etc. Sam went to gymnastics camp in the afternoon but the poor little guy was stiff from riding yesterday. Sam woke up and staggered out of his room saying, “why do my knees hurt” and rubbing his legs. I had to explain to him that you use different muscles when riding. I remember those days of not riding for a while then you get on the horse and the next day you can barely walk. On another note, Shira’s left hand is starting to contracture quite severely so I have put in a request to get Shira night splints. We are slowly working on the power chair but it needs some more adjustments to the head gear but Shira will do great. We are looking forward to the first week in August when we will be trialing a computer with eye gaze system for Shira. That’s about it. Our injured cat Lila is back to her old killer self. Maxine is a little run down and has a minor cold. That’s it that’s all.

Horse Back Riding and Picnic

What a day. When we woke up it was completely over cast and looked like it was going to rain. Our plans for the day were to take Sammy and Shira horseback riding in the morning and try and make the Chabad picnic at 4:30. It’s always difficult to plan anything for the afternoon with Shira because she really needs her ventilator breaks to recharge. I advise all parents to definitely give their children bipap breaks through the day. You don’t want to burn our kids out just to make them as regular as possible. Our kids have SMA and need support through out the day. Anyways, we had a great time at the stable. Sammy road in the ring and then I led him around the property. Sammy rode for about 45 minutes which is good considering he hasn’t been on a horse for over a year. Shira was so excited. One of Shira’s favourite videos is Elmo’s Wild Wild West video. Shira has picked up some cowboy lingo and she loves to say, “Yeehaw, Giddy up, Yahoo.” She is so cute. When that big grey draft horse stuck her head in Shira’s face Shira just beamed. That huge horse was so gentle. We made it home by about 2 o’clock and Shira went down for a nap. At 3:45 we woke Shira from her nap which we never do to go to Sammy’s summer camp final barbecue. Shira had a bit of a hard time with the extremely windy conditions at the beach but we were there for about 2 hours. When we arrived home Shira wanted to stand in her standard so we did that for about an hour and a half and watched elmo and different things on the computer together. At 8pm the usually routine with Chest Physiotherapy, bath, hair combing, teeth brushing, preparing her food for the night, etc. then back on bipap at about 10:20 and here I am writing in our diary. That was our day. And so it goes (to borrow a phrase).

Here is an excellent video about Spinal Msuclar Atrophy to watch. One of my 3 favourite doctors is on this video, Dr. Kathryn Swoboda

http://youtube.com/watch?v=aZUVFRAyl_I

Here is a link to the full un edited version of the above video:

www.fightsma.org/

July 24, 2008

Well the last 2 days have been extremely stressful. Where we got the idea that we could have another pet is beyond me. I guess we just want to give our son and family every regular household has but in reality we couldn’t deal with the added stress of another animal in the house; I guess I’m enough! 2 days ago at 6 in the morning I am woken up by the horrible stench of feces and as soon as I opened my eyes I saw the culprit; our little baby cat David. There was feces all over the pillow next to my head and it was stuck between the poor little guys paws. Under regular circumstances I can deal with this type of stuff but when you sleep as little as I do and have no free time as I do I just couldn’t handle the fact that we have something else we have to care for. Some families have many more children and several animals but I can’t deal with it as I want to spend any extra time I have with my son and my music etc. Needless to say I had to wash the poor little guys paws under the faucet and we all know how much cats like that. After cleaning the kitty litter boxes I went to throw the dirty litter bag onto the front stoop to be taken out later by Maxine when all of a sudden the cats slipped out between my legs and I was so tired I didn’t see it. As I walked back up my front steps inside the house I noticed how quite it was and realized I had let the cats out. I looked out front and couldn’t find them and as I walked around the side I saw David but not Lila. I wasn’t worried about Lila being a full grown cat. As I walked towards David of course he started to run from me so I ran and dove on him which didn’t impress him. I haven’t had to make a full on tackle for a while but lucky for me I had lots of weeds around the side of the house that the cat got caught up in as he saw me flying through the air towards him. I caught him safely and brought him into the house only to notice that he had even more feces stuck between his back toes and dried all over his fir so we had to do the bath again. I finally got him all cleaned up but I realized this is not fun and the stench in the house was out of control. Under regular circumstances I can deal with this but you have to realize that Shira lies on the floor all over the house and we have to suction her therefore we have to keep a decent level of cleanliness within our home. What is suction? We stick a suction catheter to the back of Shira’s mouth and suck out the secretions just like at the dentist but further back. So, we no longer have the cat. If the kitten was our only cat we would have kept him but since Sam already has a cat (he chose from the SPCA)Sam understood; and he still has a cat. Live and learn is the name of the game but we are often reminded of Shira’s disability or our limitations due to dealing with Shira’s disability. Its hard not to consume, consume, consume in our society and we have been living very low for a few years now. We are in uncharted territory here living and caring for Shira so our main course has stayed true with keeping life as regular as possible for Sam and delivering Shira the highest level and best care. On another note. Maxine's mother Ruth was here for the last 2 weeks. Both Sam and Shira had the best time with Ruth, reading, singing, going to Playland in Vancouver, playing at the park and the days Ruth spent with Sam at Camp Gan Israel. I know they will miss their Bubby very much as well as Maxine and I. Thank you for the joy you bring to the kids Ruth!

July 21, 2008

Today was a usual day except for the fact that Maxine and I got out on a walk together with Shira of course. I never leave Shira. As I am the best one at reviving Shira when she crashes I have to be close at hand and Shira is always with me. The only time I leave Shira is for a haircut or to go to the doctor and then Shira is on her bipap at nap time. Maxine is proficient at looking after Shira but I have always been the one that can bring her back from the extremely low vital signs. We went for a walk in our neighbourhood and stopped at Starbucks for a cold drink.

Yesterday was a day when all the fears for Shira and her life show up and there is nothing you can do but sit with all those fears of what her death might look like, what life might look like after death, how it might affect our son etc. Its just terrifying stuff. It’s a lonely road looking after someone so ill. Most people really just don’t have the time of day for the healthy let alone someone that needs the support Shira needs or her caregivers need. People mostly suck but I have learned once again how totally selfish the human race is. All you have to do is read books like, “How To Win Friends And Influence People” by Dale Carnegie to really understand that. I got this book when I was 16 and have read it over 30 times in my life and again recently. The whole premise of the book is how to manipulate people in a way that makes them think you like them. Really your supposed to find some trait you do actually like in a person and focus on that so you don’t come across as fake. Its really a pitiful statement of society in general because it really focuses on getting what you want out of other people.

Acceptance is a very hard thing to do. Accepting other people’s weaknesses and its especially hard under these circumstances. Having and giving compassion to others while you really need it is the most challenging position I have ever been placed in. People will call me up, tell me about their life, their worries, their losses, their business problems and not even ask about Shira and how its going. It just sucks the life right out of you sometimes. I was going to sensor myself on this web site but again why should I. This web site is set up to help the countless people that have kids like Shira and I’m not going to white wash how incredibly hard it is to care for a child like Shira. The fact remains that the hardest part of caring for someone who is sick is the lack of compassion and emotional support from people. You think when this happens to your family that systems and family are in place and for some it is true but of the many, many families I have spoken to most of them feel abandoned or that the shelf life of compassion and understanding for their situation is about the same as the apples in your refrigerator.

Then you have those that will tell you that you chose to care for your kid, you could have let them die and you wouldn’t be in this predicament. Well, those people are on my do not resuscitate list and should I see them lying on the street I’ll be sure to step over them as I pass by them watching them gasping to live. That’s what I would like to think anyways and that is my reaction to how that statement and those people but in reality I would and do help anyone in trouble.

All I can say is thank god to SMA Support, Youtube, etc. that have given me the ability to reach out and be reached by other parents of SMA children. Without other parents that have experienced what we are experiencing we wouldn’t have a bench mark to use to navigate through the insane waters of the medical system. Other parents have been buoys that keep us off the rocks of our mostly incredulous society. We have met some wonderful people but most are indifferent. This journey has been an interesting forced study in society, social matters of conscience, inter personal relationships etc.

I’m going to constantly remind people to reach out to people. In the words of the Dali Lama "It is not enough to be compassionate. You must act................When there is something that needs to be done in the world to rectify wrongs with the motivation of compassion, if one is really concerned with benefitting others, it is not enough simply to be compassionate. There is no direct benefit in that. With compassion, one needs to be engaged, involved." - The Fourteenth Dalai Lama

So find a person, a family etc. a kid, and make them your project. Many people have asked if I do this and yes I do this. There is nothing that eases the pressures of our situation more than reaching out to others and helping them get through their challenge. So don’t wait, reach out to someone today and consistently, go past the shelf life of your ability to be compassionate.

Yesterday we had Sam’s councillors here from his camp Camp Israel and they played with Shira and Sam for a couple of hours. Shira really enjoyed herself and she wanted to stand in her stander and show them what she can do. The day ended uneventfully which is always good news in the SMA world.

Journal

Today was a nice day. We started the day as usually with CPT then Physio. After physio I put Shira in her standard and chased Sam around the house. Then we all went onto the back porch and spent some time outside while Shira was in her standard. Shira spent a lot of time with her Bubby today reading and playing. After our naps we all spent a lot of time in the living room putting together puzzles, reading and just hanging out together. Our full grown female cat Lila disappeared all day and we couldn’t find her then Maxine noticed Lila in the window of our neighbours garage. Fortunately Lila was not lost and she returned home hungry and that’s it. Our newest addition to our house is our new male cat that Sam named David. I don’t know why he chose this name but I think it has something to do with King David he learned about in Hebrew School. We all said Havdalah tonight which was nice. Usually its just Shira and I at night. Shira loves the candles and songs. That’s it. And so it goes.

False Prayer

He who prays in sorryow because of the bleakness which burdens his spirit, and thinks he is praying in fear of G-d, or he who prays in joy because of the radiance in his spirit, and thinks he is praying in the love of G-d his prayers are no good at all. For his fear is the burden of sadness, and his love is nothing but empty joy. - Martin Bubers Ten Rungs

The above is so true. Intention is everything. Even the Samurai have to have pure intention before going into battle. In our situation its so tough not to pray and ask while in this time of total distress. I try not to ask the powers that be or even of myself when the fear of loss and our reality take over my thoughts. I wait for a time of clarity before seeking spiritual guidance through prayer or meditation.