I took Gavin into the Pediatric Surgery office yesterday to have his ostomy looked at again. I was still pretty overwhelmed from the night before, so as soon as I went to check in the tears just started flowing. For those of you who have not spent time in a children's hospital, the MINUTE you start losing it you are surrounded by staff members and other parents giving you tissues, hugs and words of encouragement to keep hope and faith and stay strong for your kid. It was the same way at Duke. When you are surrounded by staff and parents who see kids struggle every day and share the commonality of having a "children's hospital" child, there is unspoken empathy and understanding that surrounds you.
This is hard. Really hard. It would still be hard if Chris were here, but certainly more bearable. The surgeon came in and looked at Gavin and said that having that 11cm out was "normal." And that his intestines bleeding into his ostomy bag was "normal." He gave me some different methods and tips for pushing Gavin's intestines back in, and mentioned how "normal" it was for them to come out and get pushed back in. It may be normal for a surgeon who is looking inside the human body on a near daily basis, but for me, as a mom, it is NOT normal. Gavin's intestines are still pink and the surgeon felt that most of Gavin's appearance of discomfort is because he is sick, because he has this bad cough where he coughs so hard he pushes everything out. I'm always learning new things. The surgeon said that we have thousands and thousands of nerves in our hands, but only one in the intestines. So Gavin doesn't really feel me touching them, he probably just feels the pressure of me pushing on his stomach. That helps some....but only if I repeat it in a way that equates to brainwashing.
Gavin could go into surgery to make his ostomy smaller, but without a life or death situation requiring it, they don't want to put him under anesthesia with his heart condition until they absolutely have to. As long as his intestines are healthy, inside or outside of his body, they don't want to go to surgery. So our new normal is a LOT of intestines visible on the outside of Gavin's body. I was going to post a picture, but then I thought against it for those who may feel queasy seeing it. The surgeon also said that I could put sugar on the intestines and they may go in some on their own. That gives me a mental picture of a slug and salt, therefore I do not think I will be putting sugar on Gavin's intestines.
As I was getting Gavin dressed to leave and the tears of being so overwhelmed and alone during this kept flowing, the surgeon patted me on the shoulder and said, "Hey Mom, you realize that you are probably over qualified for this right?" I corrected him with under qualified and he said, "No, you're really over qualified to care for this. If you can place feeding tubes and go through the past six months as essentially a single parent with all this kid has been through, then this is nothing. No sharp objects around the intestines. Push them right back into the opening. You're just going through a rough patch. It will get easier. It has before, and it will again." I still say I'm under qualified for this, but I will take the motivation from his words!
People often ask how they can help. As a naturally independent person, it is hard to ask for help. Near impossible to accept it. I can't even articulate what I need most days, besides "another parent?" I really do feel like I get through most days just fine. The hard ones are the darkest of days, but I get through those too. I feel ashamed when people talk about how strong or positive I appear to be. I don't want it to seem like there is always strength and good energy. Some days there is immense anger. Some days heart breaking tears. Some days indescribable fatigue. Some days all consuming negativity. Most days, though, simply waking up to his face and holding my 10lb (ALMOST 11 lb) miracle is all the strength and optimism I need. I may feel like I fail sometimes, but I know without a doubt that he knows that I love him and I am always there for him. And there are always people fighting bigger, tougher battles than we are. I am grateful that we aren't in the hospital right now and that, although this current challenge is unnerving, Gavin is as healthy as he can be. I am grateful that we are able to put food on the table for our kids and a roof over their heads. I am grateful for an every growing support network and love for my son, even from people I may never meet. I am grateful for every message of encouragement that people take time to send our way. I am grateful that we have so many lifting us in prayer. I am grateful for those who have travelled a difficult journey before me and are able to offer words of wisdom and evidence of surviving it all. I am grateful for every breath that Gavin breathes and that he has a big sister who will always watch out for him. When Gavin cries, Lorelai will go over to hold his hand and say "It's ok Gavin" before giving him a kiss.
Gavin's story is one of real struggle. Highs and lows. Triumps and defeats. Medical miracles and nights sobbing on the stairs. But his story, his life, is beautiful, amazing and inspiring. To have beat the odds he has and to be so strong through days when his intestines are hanging out of his body is nothing short of incredible. When he was born, he couldn't eat or breathe on his own. When part of his colon died, he couldn't eat or expel waste. Well, today, THIS day, he eats just fine, his oxygen levels are great and his ostomy is working.
I am simply adapting to a new normal for our lives, and I know that at some point, I will look back on these days and they will be more we have conquered and moved beyond successfully. This ostomy will not last forever. One day his intestines will be secured back into his body and there will only be a scar to remind us of this battle. It obviously won't be today, but I'm sure something during this journey is meant to greatly bless our lives or that of someone else who comes across our story.