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Sunday, July 28, 2013

If You Would Have Told Us....

If you would have told me 6 months ago, we would be here...my response would have been "you are out of your mind." January, February and March had many challenges, bad times for us, to say the least. There were times Brian and I did not know if we would be bringing Ian home, we had some difficult talks with each other, morning rounds brought more unknowns, we never knew what the morning chest x-ray was going to show. Sometimes it was hour by hour, forget about day by day. Over the years as things began to change for Ian, and July 2, 2012 changed "undiagnosed" to  "VRK1" we knew we would one day be in the situation we were those 3 months, we just did not think it would be as soon as it was.

On Wednesday, Brian and I, along with one of the newest member of our village,  Ian's counselor, along with Ian drove up to Glen Spey, New York....the home of Camp Simcha Special. We were taking Ian to sleep away camp, yes SLEEP AWAY CAMP. There were some bumps in the road to get here but we did it....the past few weeks we spent washing clothes, labeling clothes, packing the bags, making stops at stores to pick up last minute things. In addition, washing clothes, packing bags for Becca, Brian and I as well. On Monday, Becca went to Florida with 2 of her cousins to spend some time with Brian's parents. So once we got Ian and his counselor settled in at Camp Simcha, met with the nurses, met the doctors, the respiratory therapies, the unit head, and many more....it was time for Brian and I to have some time without the kids....4 days with no kids. The last time that happened....easily 4-5 years ago. 

During our time, we were in contact with Ian's counselors as well as some of the other counselors we knew thru text messages and emails....here is some of the wonderful things we heard....
  • Ian's told his counselor "I like this camp a lot you guys are my pals". Our night activity tonight was a professional trampoline acrobat show - Ian's face was priceless.  He sat up front and center with a big smile, glasses askew.
  • Ian's having a great day.  Building a glass mosaic at arts and crafts, being lifted up in the air during, dancing at the concert, and got to ride in a Lamborghini after lunch! He even clapped today after his nap. He started the day off very active. Wagging his tongue at everyone and smiling. So far so good we just went for a ride in a Bentley he had a smile from ear to ear. And got to see a Ferrari and a Lamborghini.

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Look at the wave...
 
Another special surprise for the boys at camp was a helicopter ride, we got a video of it and was informed "He LOVED it!!"




Ian being welcomed by the wonderful, crazy counselors and staff at camp. The smile was priceless and a memory I am grateful for.
 
Well it is back to reality as Becca came home today...so back to work and camp for the 3 of us, while Ian continues his journey at Camp Simcha Special...

Sunday, July 21, 2013

We're really doing it

It is hard to believe that we have spent the week labeling clothes and packing the kids. Becca is off to Florida with her cousins to be spoiled by Nana and Pop-Pop, while Ian is off to Camp Simcha Special. Many mixed emotions run thru me, as well as Brian (I can tell by his actions) as we prepare for this adventure we are all about to take. As I sit here, all the bags are packed minus the last minute things. 

Four days without kids, relaxation ...I am not sure our minds and bodies will know how to handle it, they will be in a state if shock. As I say good bye to Becca in the morning I will have to keep myself together; not sure who I will be doing that for more, myself, Becca or Ian; Brian will have to hold himself together later as he puts her on the plane. Then comes saying good bye to Ian, again I will keep myself together; again not sure who I will be doing that for more, myself or Ian...or maybe even Brian.

I know all of us will make it thru the next 2 weeks as we all enjoy the journey and memories we will make. Before we know it everyone will be home under one room and our "normal" will be here again.

Sunday, July 14, 2013

A Much Needed Family Weekend

It was a much needed family weekend. Friday night, we spent the night getting camp things together. Pulling clothes out, ironing names on them...all hands were on deck. Plus a few extra ones.

Saturday was a quiet morning. In the afternoon, we went to see Despicable Me 2, I don't remember the last time we all went to the movies together. Afterwards we went out to dinner, we even had our "other" child with us. It was nice to be out as a family.

And as you can tell from my earlier  post today, we went to the O's game today. We arrived as a family but ended up not leaving as a family, that's ok....the time together was wonderful.

It was still a great family weekend. Now its time to finish up the night and get some sleep for the week ahead.

We Made It....

2 1/2 innings at the O's game.  The heat was unbareable, especially in the sun...where our seats were. While at the game we had a good time hanging out with our girl scout friends. Saw 4 runs come in for the O's and none for the Blue Jays. Becca stayed at the game with wonderful friends who offered to bring her home so Brian and I could get Ian home and out of the heat/sun. Let's hope the O's WIN. LET'S GO O'S.
 

Wednesday, July 3, 2013

A Year Later...

It is hard to believe it has been a year since we officially learned about VRK1 - who would have thought 3 letters and 1 number would have changed our lives in so many ways. That the sequence of one letter in the DNA coding being incorrect could cause all of Ian's issues...that those letters and number only put a name to what we were really dealing with, it did not change all of the symptoms we dealt with, yet our lives still changed that day....July 2, 2012 the search stopped. For me, the unknown was gone, we knew what Ian had, we would not have to wonder any more what was taking away his ability to do the things that we all take for granted. July 4, 2009, Ian started to show major signs of regression, little did we know what laid in front of us. We have been through things most will never go thru, it has brought us closer; I wish we could have gotten closer because of other reasons. It has caused fights over things we never would have fought over before hand, it has brought us closer; I wish we could have gotten closer because of other reasons. It has caused anger, frustration, hatred, emptiness, guilt, loneliness, oh wait there have been feelings of joy, happiness, pride, there has been laughter, smiles, kisses, sticking out the tongue (if you hang out with Ian at all you get this), oh so much more. We tried hard not to let self-pity be one of those emotions. That would bring jealousy of others, who would that help, as I said we tried for that to not be one...but it did come in like all the other emotions. Feelings we may not of even been aware of or been able to explain as well as things we had to decide if we were going to explain to Ian and Becca. 

Many things have become routine for us, Ian does not have much more of his physical ability to loose, VRK1 has taken it. We watch others do things with their sons or brothers that we will never be able to do with ours as VRK1 has taken that from us. But we do have many good things... love, laughter, outings for dinner, outings to the mall, watching movies as a family, seeing the smiles on each others faces. 

The past year has been one of many ups and downs, many challenging decisions to be made. Who knows what lays ahead in the next year...