I meant to post this last night…..but I was up late packing, praying, thinking through, and writing social stories to help Cannon comprehend what is happening today. Right now…..actually. Because of my delinquency….I am actually finishing this up while he is in surgery. It’s a good distraction…..really. I will tell you about today but first…..what I wrote in preparation for today……
I am my father’s daughter. Organized, structured, a planner. Meticulous, particular, cautious, and conscientious. I’m thankful for these inherited qualities. And even though they can drive my husband and children crazy sometimes……they are invaluable in our situation. Thanks Daddy!
The last few weeks came close to breaking me. I wanted to give up so many times. Frustration, aggravation, and people’s lackluster job performance were complicating my life and planning in massive ways. I just can’t possibly begin to tell you how much back and forth has gone on. The extreme amounts of phone calls, waiting by the phone for more phone calls, and desperate pleas to be heard. I am ridiculously thankful to the friends and family who have prayed specifically over these struggles and listened to me as I worked through the emotions of all this. God bless you guys! I am forever grateful! Some of the struggles I mentioned, I will not go into great detail on. Like why we decided to switch surgeons after 6 years. Short version…..go! The insertion of this Gastrojejunostomy (G J) Feeding Tube can be done 2 ways. 1) Inserting a Gastrostomy (G) Tube into the stomach first. Giving the pathway anywhere from 4-8 weeks to heal and establish itself…..and then go back in and put the G J tube in that gives the option to feed either the stomach or the small intestines. 2) Inserting the G J Tube from the get go by using a slightly more complicated process for the surgeon. But that is in NO WAY less safe for our son. We advocated STRONGLY for what would be best from a medical AND psychological standpoint. And in doing so…..decided to make a change. One in which we are EXTREMELY comfortable with. Thank the Lord! THAT was a true answer to prayer. A LOT of prayer!
We have been working with a team of feeding therapists and a nutritionist. We needed to start backpack training Cannon. He will have to wear a backpack when he is up and about. It will contain the pump and feed bag. He needs to get used to the practice and the weight. So, I pulled out his old preschool backpack, tossed in a few things that are equal in weight to what he will experience and began slow, steady, daily practice. We just did 15 minutes the first day. Then 30….45….and we have now worked up to an hour a few times a day. He really has been good about it. He likes to watch timers count down. So, we would set the oven timer and he would check in regularly to see how much more time he had. I have been amazed and thankful thus far. We have also been working to ween him off of his current nutritional formulas and into the elemental nutrition that he will now take through his feeding tube. We did a slow, steady process with this as well to incrementally watch how his body would respond. So far so good! Which is awesome! There is WAY more detail to that but I will spare you! Getting feeding therapy approved and applying for help with the cost have been a few other hurdles we have been working our way over.
If you’ve followed Cannon’s journey over the years…..you know he already has a device called a Chait Button in his abdomen. Which allows us to manually flush his colon from home daily. And that we needed to protect this very pliable device from the very sensory seeking human being it was implanted in. So, we commissioned an orthotics company to mock up a specialized abdominal binder that would cover it. Eventually, we found a non-profit that could make these at cost for us! Saving me HUNDREDS of dollars a year! Well, now we need a new one. And looking online…..the ones that are made to cover this particular device where really expensive and would take a while to order. SO, I called the non-profit. He looked at the one I had been online……and mocked one up in like 3 hours. AGAIN…..saving me tons of time and money! And met up with us on a Saturday for a fitting! I just can’t…… Some of the human beings we have met on this journey are just impossible to describe! They are truly EXCEPTIONAL!
Speaking of exceptional…..I have another beautiful child. His name is Townsend and he is just that……exceptional. I just couldn’t imagine if I tried….a more loving, caring brother. A kinder, more thoughtful child. And a more motivated young man in terms of pursuing his faith. I have so very much to be grateful for. Over the last few weeks, I have been trying to make absolute certain that he feels just as much of a priority. Spending extra time, having little dates, and more in depth talks with him. Hearing his questions, giving the answers I could, and just accepting and loving him through his feelings and emotions. It’s such an important part of all this.
The final piece of preparation was getting some tools together to help Cannon understand the changes. We didn’t want to tell him too much prior to surgery. His anxiety has been pretty righteous lately and we didn’t want to further contribute to that. So, we said virtually nothing. And when he woke this morning….he saw this.
Because he is so used to going in for endoscopies and bronchoscopies…..he took the news like a champ.
But this isn’t just one of those standard days he has become accustomed to. And we needed a more in depth method of explaining things to him when he wakes up. So, last night I mocked this up. I wish my bad handwriting and exhaustion hadn’t hampered this a bit. It kind of looks like my 9 year old made it….but I’m ok with it. And I laminated it….hence the crummy glare in the photos. But overall, I think it will do. So, when he wakes up…..he will be smothered with love and attention from us, hear the spirit filled music from his new Hillsong DVD (thank you “Aunt” Melissa), and see this social story.
I think it will give him the basics and help him to not be so fearful. Aiding him in understanding the purpose and reality of his new life.
My mind is at war with my heart right now. When I was putting one of Cannon’s shake cups away yesterday I thought……”Will he ever drink from this again?” And I wanna break down. When he tells me how much “I love rice.” Or “I can’t wait for Thanksgiving!”…..I want to break down. When he’s in so much pain that he could barely hold his eyes open…..and he says “I want to be healthy.” And my heart wants to break into a million pieces……
Take these ocean tears
Hold me through the trial
Come like hope again
I’ll praise you
Even when it hurts like hell
I’ll praise you
Even when it makes no sense to sing
Louder then I’ll sing your praise
My earthly father taught me praise God in the storm. And my Heavenly Father taught me that surrendering in faith is not losing or defeat. It is giving my problems completely over to the One who has already won. And I am my FATHER’S daughter!
So, here we are…….waiting for our precious firstborn to wake up. And we will deal with what comes next with faith, love, hope, joy, and praise in our hearts.