Saturday, November 8, 2014

Jacob's Travels to Atlanta, Georgia September 10-15

Hi everyone! I'm very excited to share this blog post with you! Roman is my very first guest blogger and he would like to share a special friend with you- Jacob the Bear.

If you are new to Living a Special Kind of Life then let me fill you in on a couple things pertaining to this post.

1) When Roman was about 2 years old he was diagnosed with a genetic condition called 22q11.2 deletion. Its a partial deletion of the 22nd chromosome, and though his is on the "mild side" it certainly still has its challenges. 
You can read more about condition here: Dempster Family Foundation: What Is 22q? 

2) When I moved to Atlanta I started the web based support group to help me find other kids or adults with the condition. The response was wonderful and we have made life long friends through it. 
You can help spread awareness by "Liking" our Facebook fan page here: 22q Atlanta Support Group 

3) Through a mutual friend in the group I learned about a bear named Jacob. Jacob is not just any stuffed bear- he's a traveling, 22q awareness spreading BEAR! He carries a journal filled with entries from children all over the country who have the deletion. His box is filled with hand made gifts and souvenirs from the places he has been- but the story of how Jacob was started was the REAL treasure:   

(From the Jacob's Travels Group)
Summer of 2013:
My Daughter, Kyli, took the then "no named bear" to Dragonfly Forest Camp. When she returned home we discovered the bear was missing. The bear had somehow sneaked into the bag of a fellow camper and made it home with her! Kyli's friend kindly mailed the bear back to her in a box with a note. The excitement I saw on Kyli's face was so awesome! This is how the idea for Jacob's Travels 22Q was started.
Kyli asked me to message Becky Kane, a fellow parent of a child with 22q deletion and ask her a very important question. Her son had passed away from complications from the chromosomal deletion and Kyli wanted to name the soon traveling bear in his honor: Jacob. She was honored.
Jacob Kanes Mom, Becky, was the first person Jacob the Bear visited. Becky wrote the first entry in Jacob's journal and added the Special Olympics medal her son Jacob had won and was so very proud of.
During this time Kyli was having difficulties making friends. Kids can be so cruel sometimes. One of the best things we have ever done for her was sending her to Drangonfly Forest Camp. To be with kids just like her and to know she wasn't alone..... made all the difference in the world! Life is so much more fun with friends!
So now we have learned that Jacob is on his way to visit Atlanta, Georgia! I shared the post from the other places Jacob had been with Roman to help him better understand. Initially Roman was just pumped to receive a package in the mail. That's HUGE for a 7 year old!

Wednesday, September 10th: Jacob Arrives & His First Outing

Roman: I went to speech with Jacob. Then I went home and played with Jacob. He slept in my room. He's nice.
Mommy: Jacob arrived safely on a Wednesday afternoon. I opened the front door to head out to pick up the boys from school and head speech therapy. Me and his sisters were very happy to see a big brown box waiting on our door step. It was Jacob! I put the box in the front seat of the car and off we went.
While Romans brother was taking his turn in therapy we opened up the box. Inside was Jacob, dressed in his red vest, and a large binder filled with precious accounts of all the places Jacob had been. Roman immediately snatched up Jacob and their special friendship began.
That evening we took Jacob to our church for children's choir practice. I could see this boost in confidence when Roman carried him. He carried him PROUDLY! It was obvious Jacob made him feel VERY special.
That night Jacob enjoyed some bedtime stories and being tucked in with Roman all night.

Thursday, September 11th: Jacob's First Day in the 2nd Grade

Roman: I went to school with Jacob. I read to him. He played at school. We didn't take him outside though, he might get all dirty.
Mommy: I had emailed Roman's teacher the night before to let her know who Jacob was and why he was coming to school with Roman for the next couple of days. She was thrilled. For the next 2 days Jacob was aloud to stay side by side with Roman throughout the school day. During free time Roman and his classmates looked through the journal. His teacher said the class was learning how to read maps, so she had them try to locate all the places Jacob had been on their map. I loved that!
That evening Jacob waited patiently as Roman worked on his homework. For his reading work we decided to read more in Jacob's journal.
I was delighted to see Jacob had traveled to Ohio a few times, When Roman was first diagnosed we were living in Cleveland and I had trouble finding other kids with the condition. Apparently Jacob didn't!
Roman: Jacob is wearing a hat, its an Ohio hat.

Friday, September 12: Jacob's Last Day in 2nd Grade
Roman: That's Jacobs medal. It looks brand new, its from the Special Olympics.
Mommy: Jacob returned to school with Roman and his classmates said goodbye to their new furry friend. And now it was the weekend! Roman was absolutely fascinated by Jacobs Special Olympics medal. When Jacob wasn't wearing it, Roman was. We ran a few errands that night and Jacob came along.
For the most part Roman was great at keeping after Jacob, but it did help Roman learn some responsibility. When he thought he misplaced Jacob, he would panic. So we talked about being more careful with the things we care about. Jacob was a great teaching tool in more ways then one!

Saturday, September 13: Jacob Hangs Out with Roman
Roman: Jacob loves trains like me. We are playing trains.
Mommy: I had to work an extra long day, so Jacob and Roman spent most of the day at home with Roman's Daddy and siblings. Noah, Lydia and Sophia loved Jacob a lot too but struggled to understand why he came just for Roman. I'm pretty sure Roman enjoyed their jealousy!

Roman certainly enjoyed dressing Jacob in the different outfits that came with him. Jacob wearing his train hat was only appropriate as they played with some of Romans favorite toys.

Sunday, September 14: Jacob Goes to Sunday Morning Service
Roman: Jacob went to church with me. He's wearing an Ohio shirt. I'm wearing an Atlanta shirt. He sat in his own seat.
Mommy: It was our last full day with Jacob and I could tell Roman was having a hard time understanding that. I encouraged him to simply enjoy the day and not stress out about Jacob being mailed to the next kiddo.
That morning we went to church and Jacob attended Seekerville Children's Church with Roman. Roman was able to introduce him to some more friends as well as his Teachers.
That night we typed a letter to Kyli, the girl who owned Jacob, and placed it in the notebook. Roman was still struggling with knowing Jacob was going to the post office in the morning. I just kept telling him how important it was for Jacob to go the next kiddo so he could make them feel special too. And reassuring him that Jacob would return again.

Monday, September 15: Jacob Says Goodbye & Is Mailed to Michigan
Roman: When is Jacob coming back?
Mommy: That morning before Roman got on the bus he said goodbye. Roman took it better than I expected, but when he came home from school he instantly asked me where Jacob was! We tracked Jacob online and kept checking his Facebook page for his safe arrival in Michigan.
We can't wait to see Jacob again and be apart of his travels! We feel honored to be apart of his journey, to help keep another child's memory alive, and help a little girl meet new friends just like her! Not to mention the numerous people and kids that were able to learn more about 22q because of Jacob being such a great conversation starter! See you soon and safe travels Jacob!

I dedicate this post to Jacob Kane and all those who love him. 
...for the kingdom of heaven belongs to such as these...

Thursday, November 6, 2014

Sophia Turns 2!

Better late than never.... If you frequent my blog then this should be no surprise to you :)
My youngest is now 2, and for the first time in 7 years I no longer have a baby in the house! I'm happy to see certain things get easier as they get older, but I cant lie- its hard letting her grow up.
Having children back to back was what we wanted,

*Insert rhetoric*
-Yes! It was intentional and I DO know how they got here and yadda, yadda, yadda- 

but through Sophia I'm seeing something I wish I was more conscious of over the years... thinking back to this age for the other kids is a blur. Everything went so fast. I was spending time taking care of the youngest (at the time) and keeping up with the oldest, mixed in with therapies and insecurities and a whole lot of learning...
Now don't get me wrong. Mommy and Daddy have plenty of love to share for everyone. No, I don't think anyone got "left out" or "didn't have enough one on one time" but for ME, for my own personal "mommy records" cataloged in my mind, having kids so close together left those records smudged a bit. 
There are some things that I remember really clear: 
The same month we lost a baby we found out something was "wrong" with Roman. 
And sitting in the genetics office awaiting his test results, my OB called to let me know we were pregnant again with Lydia. 
I remember very clear the week we found out Sophia was coming, Noah was diagnosed with Autism. And I remember being 9 months pregnant with Sophia, staying in the hospital with Roman after his surgery, Holding the hand of my oldest, with other hand on my belly, weeping for both. 
There is so much more to my life as a parent than those difficult times. And now that the baby chapter has closed, I am learning to become more and more intentional in the way I watch my children grow. Hearing Lydia sing, Watching Noah play, Listening to Roman share about his day... I'm intentionally cataloging away in my mind. And no longer will I let certain challenges rob me as a parent. I will enjoy my children, I will savor this time.  

Roman would say "She's all our baby!" and Sophia really is.

Its an absolute joy watching you grow, Sophia Grace! We love you!