Cannon Invites You

Party time will not be 7:00. We will begin the party at 6:00, having cupcakes and ice cream and releasing the Wish Lanterns at 6:30.

Can't Make It?

We are so blessed to have loved ones spread across the globe. Naturally, not everyone can make it to Cannon's birthday celebration. Some family members inspired a great idea to fix that problem. If you are not able to attend in person, feel free to email me a "birthday wish" that I can write down on a card for you to put in Cannon's time capsule. You can post it here as a comment or email it to my personal account, with the subject "Cannon's Wish". We will then reserve a wish lantern, in your name, and make sure to light it and release it with all the others on the night of Cannon's birthday. We are so excited about this and feel everyones love and support. Thank you for being a part of Cannon's life. He is an amazing boy that we are more than thrilled to celebrate a year with him in our lives.

Birthday Wishes

The hot air balloon or a small plane ride to the Oregon coast? Great ideas in theory but the reality is, even if they would let Cannon ride, how do I know he wouldn't be fussy or get sick or just be miserable the whole time? Inspired friends suggested releasing lighted lanterns on his birthday. Genius! So we would like EVERYONE that wants to be a part of it to join us on March 1st. The plan is to have everyone come and write a Birthday Wish for Cannon, that we will put in a time capsule and read again next year on his birthday, and then release a wish lantern into the sky. I think it will be beautiful and so special. More details to follow...

Come one, come ALL!

Golden Birthday Ideas

As I've been planning Cannon's first birthday my goal is to celebrate in a way that Ethan and Ella will always remember it. I know Ethan will remember Cannon, but Ella is still at an age that I wonder what things she will remember throughout her life. I want Cannon's birthday to stick out as a day of love and joy. I found a website that talks about "The Golden Birthday." It says this: "The golden birthday is the day a child turns the age that corresponds to the day of the month on which he was born. One outstanding feature of the golden birthday is that is can only come once in a lifetime". This means that since Cannon is turning 1 on March 1st, this year is Cannon's Golden Birthday. Not that I needed even more of a reason, but I am inspired and determined to not hold anything back. My idea for his birthday is "You are My Sunshine." The words to this song are beautiful, but with Cannon's specific situation, they are so meaningful also. I was pursuing renting a hot air balloon to have a "Rise and Shine" breakfast party but since the height requirements do not allow Cannon or Ella to ride, that will not work. Kent and I have discussed taking a weekend trip to Portland and take the family sailing, but we worry about the cold air. You can see what our vision might be, so if you have any suggestions or ideas I would really love your help. I want to do something that seems limitless. Cannon has been bound and limited his whole life and for one moment, one memory, I want to feel free and unstoppable. I am very excited to celebrate my special baby''s Golden Birthday- now I just need to know how! Help! If you have any ideas or suggestions- I want to hear them! Thanks!

One Year Ago

This is what I looked like exactly one year ago. It doesn't seem that long and yet it feels like another lifetime. One year ago I was merely a couple weeks away from meeting one of the most special people I will ever have the honor of knowing. One year ago I had no idea the journey that lay ahead of me. One year ago my biggest concern was how chubby my face was and if this little boy would look like Ethan or Ella. One year ago I anticipated the arrival of our third precious little baby, whom I always knew would have an impact on my life but I never could have known the person he would be, and the person he would help me to become. Cannon is still teaching me, molding me, refining me. As much as I hate to see my baby suffer, and I complain about sleepless nights, feeding tubes, constant congestion, missed milestones and so on, I am deeply thankful that nearly one year ago I was blessed more than I will ever know, with this perfect spirit to be my son.

The "Perfect" Baby

I had to catch my breath when I heard Ethan say, "Mom? Can we have another baby?"

There are a few reasons this question pricked at my heart but, for now, I am going to focus on the reason why Ethan would ask me. After his question, Ethan continued with, "I just want another baby because Cannon is not a perfect baby." You can imagine how I felt, hearing these words, and I know Ethan could read my emotions on my face. He quickly added, "I love Cannon so much, but he has that tube and he can't do things that other babies can."

I realized what he was saying and feeling. He was asking why his little brother can't be tossed in the air, why he can't sit up and bang on toys, why can't he walk around making messes, or why is he not able to roll a ball back and forth with him. I know the love that Ethan, and Ella, have for Cannon so I do not judge Ethan for saying these things. He genuinely just wants to have another baby (ALSO, not instead of) that can do what "perfect" babies can. My heart wanted to break, and I know it did a little, but I quickly realized what a moment I had here to teach my son about our temporal bodies and give him a new perspective on the blessing of eternal life.

I talked to Ethan about how amazingly strong Cannon was before we came to earth. His spirit was more perfect than Ethan's, or mine, or even Daddy's! I told him that Cannon was strong enough to experience these hard things with his physical body, things that we probably couldn't handle like Cannon could. I told him that Cannon is an example to us of being strong in spirit and that he is so close to Heavenly Father and we can learn from Cannon and try to be spiritually strong to go through hard things in this life. I told him that in heaven Cannon won't have physical problems that make his body not perfect. I told Ethan that Cannon's spirit is already perfect.

I was comforted when I saw the awe in Ethan's eyes as I told him these things. He was so impressed that his little baby brother had a stronger spirit than he did. He said, in a way that only an 8 year-old- boy who is playing basketball while getting a deep life lesson taught to him, could, "Wow! Cannon is really cool!"

I am so happy for this moment that I get to teach my children, while reminding myself how "cool" things are and Cannon is one amazingly perfect little man!

Two Peas in a Pod

I am so happy to be helping with ideas for a friend that is expecting not one, but TWO little grandbabies. One boy and one girl- perfection. Here are some ideas for the baby shower celebration.

Consider Yourself Hugged

If we have to be in the hospital, I'm glad it is close to home. It has made such a difference from how Kent and I felt when Cannon was put in the hospital in Maryland. In Maryland, we felt so isolated and locked up there. Here, we are able to be visited by our dear friends that love us so much. We have had dinner brought into our home every day. We are thankful that Laura was here to help us as Kent was recovering from the surgery he had last week. If she wasn't in town when all of this transpired, the stress level would have been through the roof. We are thankful for her sacrifice and hard work. She keeps everything going as I am at the hospital 22 out the 24 hours in each day. I am so thankful for the love and support we have felt from everyone through this. We have also had an outpouring of phone calls, texts and emails. I just hope I can show that appreciation I have to somehow let you all know how much I feel of your love. I couldn't do it without it.

I came home from the hospital this morning to shower and get Ella ready for school. While I was there, these beautiful flowers were delivered to my doorstep. They were not signed, but I want whoever it is that sent them to know how HAPPY it made me to know that I am being thought of. I thank you for that and definitely consider myself hugged!!
Through this journey we have met Cannon's kindred spirit friend, Max, who lives in Canada, also diagnosed with Menkes. Cannon and Max have had their share of hospital visits in the last couple months and they always make sure to send each other balloons and a Teddy "Bear" hug. I am so thankful for these gestures that mean so much. I hate Menkes and I wish it did not exist, but since it does and others have gone through this too, I am thankful for the connection I have with other Menkes families. I can call on them for feedback, information, strength, love and understanding at ANY time of the day. I know that they are a blessing in my life given to me directly from my loving Father in Heaven.