Some nights sleep does not come easy...my mind wanders...to many, many different places. The other night when sleep did not come so easily to me, I decided to lay there and not move, regardless of what I needed or wanted, just lay there and stare. I had an itch, nope could not take care of it, I wanted to turn the TV on, nope needed to lay there. Brian was sleeping so I had no one to help me....I did not want to wake him up because of my game. That is just it, laying there and not moving was a game for me but for Ian and others like him it is not a game, it is real life. My heart broke a little more the other night while I was playing my game...to understand even just a little bit of what it is like for him. I will try very hard to keep all of this in mind during the times I get frustrated with Ian for needing something over and over again. Ian is more my hero because I played the game...It makes me even more ready, ready for him to be able to run free, ready for him to be out of pain, do things for himself...but still not ready in other ways...I am sure there is a part of me that will never be completely ready... A few weeks ago I was speaking with one of the clergy at the synagogue and he reminded me of the song...IS IT OVER YET? Written by Billy Kirsch, Sung by Wynonna Judd
Tell me when I can open my eyes I don't want to watch you walk out that door There's no easy way to get through goodbye I'd probably try and talk you into staying once more
Or I'd lie and say it's all for the best Wish you luck and say, "I have no regrets," But I'm not upto being strong So I'll wait until you're gone Is it over yet? Is it over yet?
A taxi's waiting in the driveway for you You call my name, I guess you're ready to leave I'd like to help you with a suitcase or two But I'm afraid, I'm gonna windup down on my knees
I should tell you that I want you to go I really need to spend some time on my own Smile and say, "Goodbye" So you don't see my dying inside Is it over yet? Is it over yet?
I should lie and say, "It's all for the best" Wish you luck and say, "I have no regrets" But I'm not up for being strong So I'll wait until you're gone Is it over yet? Is it over yet? Laying there....brought back the words of the song as well....am I ready...is it over yet?
FYI....Ian is doing well. The last week was a little rough with pain but after some increases in medicine, his pain is back under control.
The past few weeks Becca has had some adventures. First, was sailing with girl scouts. Becca and I spent the weekend on two sailboats. She got to learn all about sailing as well as the bay environment. It was a wonderful experience for all the girls.
This past week, she went to NorthBay with the 6th grade. There they get to explore environmental issues through outdoor investigation. In addition, they worked on team building, went kayaking, on a zip line and a big swing. From all the photos and hearing all her stories, it was a great last week of school.
Now it's time to enjoy summer and get ready for 7th grade.
Back around the kids birthday, Ian worked on a list with his teacher about what he wanted...well on thing he wanted was Spiderman sheets. Our response was to him was they don't make sheets to fit your hospital bed. We had many people ask us about them and try to find them, even though we had told them we had been looking for a long time and they weren't going to find them. Well leave it to someone from The Jewish Caring Network (Gila) to figure out a way...looky....SPIDERMAN SHEETS....and Ian's smile was priceless when he received them.
We can't forget that when Ian has a birthday so does Becca...and a little birdy told Jewish Caring Network that she wanted and needed a new bed set....colors matched perfectly with her room...again thanks to the little birdy and Gila working together.
Thank you Jewish Caring Network and Gila for putting smiles on my kids faces.
Today we made a special visit.....where you ask...to Chatsworth. For those of you who don't know, that is where Ian has been in school for the last 5 years. He got to see all of his friends and well as all of his teachers (and some of Becca's) from over the years. The other day I asked him if he would like to go visit and he did not miss a beat with his answer of yes. The smiles on his friends faces she we got to the classroom was priceless as was his. I did not get to take any photos of Ian with his friends or teachers....but I did get a picture of his activity when we got home. As you can tell, the outing whipped him out.
A special thank you to all of his teachers from over the years for taking care of him and teaching him in your own ways. Thank you for all the staff at Chatsworth for thinking outside of the box and helping Ian and our family....including the our family into yours and dealing with all our needs. Watch out Franklin Middle you will have both kids next year (well Ian through home and hospital).
So I thought Ian had lost all he was going to lose...thinking what little, very little he was still able to do he would always have. It never occurred to me that he would lose more...after all why would I think that. I come on now, really...part of his disease is Spinal Muscular Atrophy....along with that comes losing the ability to eat, walk and breathe. I guess I was in denial and taking it literally...so when Ian started to have trouble sucking his drinks through a straw there were always other reasons for it to be difficult for him. After all doesn't being on oxygen make it harder for one to suck through a straw, what about have a bad night and being too tired to do it, let see what other reasons did I come up with...if we just give him a break and let him have some liquids through the syringe in his mouth, he will start sucking again. Well VRK1 got us again...or maybe just me again....but Ian has lost his sucking ability...not his swallowing ability...just the sucking so for that I am grateful. We are currently giving him liquids through a syringe in his mouth as he still likes to drink...one more for VRK1....one less for us.
This past Friday evening the world lost a one of a kind man, my brother-in-law's father passed away suddenly. I have gone through a mix of emotions over the past few days, some I have gone through when others close to me have passed while others I have not. When I got to the funeral, I wondered "how I am able to do this"....I have done it more times then I would like to acknowledge through out my years. When I hear someone has passed away, I feel numb, heartless as my thoughts sometimes go to "such is life", I feel as if I don't feel for the loss, not sure I can. I have been to Sol Levinson's more times then I would like to acknowledge over the past few years....each time I walk in I ask myself "How can I be doing this?". More times then not, I envision me sitting in the front row with Brian and Becca, along with our parents, siblings, nieces and nephews. Sometimes when I am driving I wonder what life will be like, as Ian continues to process, as dying comes closer. What will that day be like, the following day, the funeral, the Shiva period, the days, weeks, months and years afterwards. All the while, my heart hurts and feels numb but at the same time smiles...pain will be there but how... Smiles and laughs will happen even with the pain. I know....no I am not trying to rush things but I know peace will come for all of us. I hope that for all of those times I have been to Sol Levinson's in the past, peace has come for those who have lost.