It took some time to work into the Christmas spirit this year. I spent so much time focusing on what we didn't have and not enough focusing on the spirit of renewal. My friends helped spark that little light that would begin to again burn the passion of the season. We have memories to make this holiday season.
William received some special "do dog" PJ's from his cousin Beth. The joy these brought him renewed my resolve to get PJ's to all our little cast friends! So 2011 is going to be the mailing blitz to 3 new centers. This will make 5 centers and countless kids greeted by our club. Parent packs have been ordered to accompany these PJ's. The parent pack is the backbone of the casting process. Families need to know how to handle this new accessory and we intend to arm them with this valuable resource. My biggest goal for 2011 is the plan a fundraising event to move us to the next level in giving. We have dreams to follow and funding these dreams will be our focus.
A little William update: Cody has started trying to modify his brothers naughty behavior this holiday. He is giving his brother "Santa Points" at the beginning of the day. As he does really nice things i.e. picks up his toys, gives hugs, plays nice, he earns additional Santa Points. Very cute. William cheers Santa points. If he is not so nice and acts like a tyrant Cody deducts Santa points.
Today he was negative 50 Santa points. Holy Cow. Thank Goodness he is cute. I think that will help Santa take him from the naughty list. Another trick he has started is using his cast as a storage center for later. A few days ago he started telling us "color red hurts". It took a little coaxing but we were able to translate to their is a red crayon in the back of my cast. After lots of screaming and a panty hose to floss under the cast a red crayon emerged. Last night it was another crayon and chex mix. We keep telling him to stop putting things in his cast, but it is way to tempting. I am trying to keep a shirt on him in the hopes it will at least deter future hoarding issues. I am terrified of what we will find when this one is finally cut off.
A final thought as I log off for the holidays. We have all traversed a trying 2010 whether it be cast changes or changes in treatment. With each bump we have bounced back the other way. We may get knocked down, but we aren't staying down. We have our lives and love to keep us coming back to center. Last year I started 2010 somewhat alone and scared of what was to come. 2011 will begin very different...I have friends who are more like family & family who are incredible friends on our side, I have expereience to know I can handle whatever is thrown our way, We have a beautiful charitable resource that has no where to go but up honoring our children everyday, & best of all I have the boys in my life to keep me on my toes. I have Happy Everything!
This blog was created by parents with children who have infantile scoliosis. Many of our children are in treatment using Derotational Casts in many forms, from many centers. This was created to share our stories, triumphs and tribulations.
Wednesday, December 22, 2010
Tuesday, December 21, 2010
The cast becoming a family member
Massimo has been out of the cast for 2 weeks now! He had come down with a rash from the previous cast and also a cough. So we cancelled his dec. 14 cast date and will wait til after the holidays for cast #3.
We have enjoyed the freedom for Massi! He literally wants to take a bath everyday. He puts food on his hands and then in his hair because I think he knows it will result in a bath! I love picking up a lighter Massi and hugging him as long as I can!
But as I was looking at his back seeing what I think is an improvement in his curve, I was missing the cast! Why? because I know the cast helps him, gives us hope that he will have a straight spine, it reminds me that the casting is a miracle that has brought improvement to other kids and brought some wonderful families into my life! I hope this all makes sense!
On a lighter note, the cast is like another child.
With the 1st child you are so careful and doting on them and even checking to see if there chest goes up and down in the midddle of the night. We dress them in all these cute outfits and if they get a stain on the outift, off it goes and into the wash.
This is like the 1st cast, It is so new, you don't know what to expect! You make sure it is ok and that your child is ok in it. You practically dress your child in a long bib so not to get the cast dirty. If the cast does get dirty, the wipes come out and you make sure it is spotless.
When the 2nd child comes, you feel like a pro. You pay less attention to the dirt on their clothes or even their body. You become less neurotic about their every move....although you don't love them any less.
With our 2nd cast, it was like having the 2nd child. We were less worried about Massi in the cast. We didn't follow the cast's every move. We were less concerned about it getting dirty and that definitely showed as Robert took it off! To see parts of our Christmas tree, food, and god knows what else under there, made me chuckle.
Now with the 3rd cast coming soon, will it be like us having our 3rd child....Massimo. I knew he was the last one we would have so I treasured every moment because I knew i wouldn't experience it again.
Don't get me wrong, I know in no way this is will be Massimo's last cast! I am just curious to see how we will welcome and treat our newest family member!
We have enjoyed the freedom for Massi! He literally wants to take a bath everyday. He puts food on his hands and then in his hair because I think he knows it will result in a bath! I love picking up a lighter Massi and hugging him as long as I can!
But as I was looking at his back seeing what I think is an improvement in his curve, I was missing the cast! Why? because I know the cast helps him, gives us hope that he will have a straight spine, it reminds me that the casting is a miracle that has brought improvement to other kids and brought some wonderful families into my life! I hope this all makes sense!
On a lighter note, the cast is like another child.
With the 1st child you are so careful and doting on them and even checking to see if there chest goes up and down in the midddle of the night. We dress them in all these cute outfits and if they get a stain on the outift, off it goes and into the wash.
This is like the 1st cast, It is so new, you don't know what to expect! You make sure it is ok and that your child is ok in it. You practically dress your child in a long bib so not to get the cast dirty. If the cast does get dirty, the wipes come out and you make sure it is spotless.
When the 2nd child comes, you feel like a pro. You pay less attention to the dirt on their clothes or even their body. You become less neurotic about their every move....although you don't love them any less.
With our 2nd cast, it was like having the 2nd child. We were less worried about Massi in the cast. We didn't follow the cast's every move. We were less concerned about it getting dirty and that definitely showed as Robert took it off! To see parts of our Christmas tree, food, and god knows what else under there, made me chuckle.
Now with the 3rd cast coming soon, will it be like us having our 3rd child....Massimo. I knew he was the last one we would have so I treasured every moment because I knew i wouldn't experience it again.
Don't get me wrong, I know in no way this is will be Massimo's last cast! I am just curious to see how we will welcome and treat our newest family member!
Saturday, December 4, 2010
Happy Day Sweet William J!
Two Years ago we brought a beautiful baby boy into our family. Baby made four. The perfect addition to our family, the missing part that made us all whole. Cody finally had his little brother, the one that would be with him for a lifetime, that would laugh with him and cry with him when times were hard. His lifelong bestfriend. I remember the anticipation of what life would be like when he had this new friend. We laugh now about the angst we were feeling before he arrived. 7 years almost 8 years of just Cody and now we have someone new to love...would their be enough love, would Cody feel cheated by having to share us with someone else. The day of his arrival we quickly learned this heart of ours grows. Their was enough for all of us. Jump two years and a lifetime of whats and we are all still in awe of our family of four.
William has traveled a lifetime in his two short years. Our hearts have grown to add so many more to our family than just the little one we brought home that day. Love refills and expands to allow for all you need. It is a renewable energy, when you feel you have hit the wall you wait and recharge and their it is ready for more. William has given us gifts he will never understand. He has taught his brother patience and compassion for others. He has taught our family that perfect has varying meanings and that love is always enough. We are so blessed to have these two boys both perfect in their own light.
The past few weeks have had ups and downs for our family. William has struggled with this new cast. It is larger than the last and we spent much of the first few weeks reassuring him we can't take it off. His birthday dinner last night ended with him projectile vomitting for about 6 hours. His brother also was hit by the bug and so laundry was a never ending process for us on his birthday evening. The high points of the day far outweigh the downsides. Cody and I took William to Target and let him pick out his birthday present from our family: A movie size Jessie Doll with a pull string. He loves that doll! We also picked up the newest GLEE cd and danced all the way home in the car. Cody said mom people are staring at you, I smiled, turned the volume up and danced more as the car went down the road. Cody, my nephew Sam and William then started dancing in the car with me. We danced all the way to the driveway. When we parked I smiled and said wasn't that fun, thats whats called living my loves...if the other people were staring it's because they need to dance in their car more. Later last night, William had fallen asleep in between throwing up and I had just placed the last load of laundry in the dryer for clean pillows. Cody started yelling for dad and I, we walked in the living room and Cody had You Tube pulled up on the Wii. He hit play, GLEE I had the time of my life, started playing with Cody in the middle of the living room singing to us both, he stopped for a moment and said "Now thats called living, made you smile." We finished the song, Daddy and I dancing with Cody....Truly living.
Life will throw you curve balls, but you must never be afraid to look to the light. It's the moments in time where your heart is full and your mind can just dance that will mean the most. You never look silly when you are just living it to it's fullest!
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