Sunday, October 27, 2013

Living in the trenches.

I'm many things to different people. But these last weeks, as I try to find ways to fill the hours in a day, I've wondered; "Do I know who I really am?" I'm not sure anymore.

Wyatt's and my lives were so tightly knitted together.

I was the Mother that learned to navigate the intricacies, politics and practices of the medical world and the compromises of IFSP and IEP meetings. I was the Mother that would set up the video streaming system and learned how to work the small computer that transported Wyatt into his classroom to see his teacher and his peers during the school year. I was the Mother that went toe to toe with the discriminating Tai Kwan Do instructor that refused to let my son participate in his class because of his health, even though my son was plenty capable to participate. I was the Mother that stood at my son's first baseball game taking pictures and holding my breath as I captured the very first ball that was thrown to him. He surprised us all as he smacked the ball with the bat and ran to first base. I was the Mother that talked to one or even several physicians or medical professionals seemingly every day. I was the Mother who could see what my son could do and took joy in that. I was the Mother that signed a Do Not Resuscitate order and chose to take my son home to live the rest of his life. I was the Mother with a sick child who was grateful to be able to take care of him every day. I was the Mother that organized glass vials of medicine, IV tubing, alcohol wipes, saline, needles and syringes to make it easier for us in our daily routines. And I sometimes even felt the need to re-organize it all when I was really stressed. I was the Mother that wrote out med lists and timed each one with precision. I was the Mother who encouraged and taught my son how to walk again. I was the Mother who had to tell my son he was going to die. I was the Mother that comforted him, eased his fears and held him when he just needed to be close. I was the Mother that told him that we could live and have fun to his very last breath. I was the Mother that would transfer my floppy boy's body into a wheelchair, load all his needs onto the back and go out for the day so he could continue to enjoy what time he had left. I was the Mother that was carefully and strategically drawing up syringe fulls of various IV medicines in parking lots. I was the Mother that gave my son pep talks when he felt weary. I was the Mother that juggled neb treatments, titrated oxygen requirements and learned to delicately shove a suction tool to the back of his throat to clear the secretions that would inhibit his breathing. I was the Mother that sat in the bed holding my son's hand the day he died.

Woven intricately; over, under and around each other. 

Our lives became like a knitted blanket woven tightly together, but without him and those strings going over, under and around my own, the blanket begins to unravel. And when that happens, it exposes me.

The Mother that lived in the trenches for years, fighting a different kind of war. 

There are many of us out there. Fighting this war with our children, for our children who have a terminal disease. We can often relate to one another like only another who is living in these trenches can. The difference of this war is we often know what the end will be before it actually comes. We can dodge the attacks for only so long before it takes the one we are fighting for. And when that happens, when you don't have to fight any longer....then what?

For me, it's made me wonder who I am, what I want and who I want to be. Now that my son is free; running, playing baseball and riding roller coasters in Heaven. Who am I?

Am I the perky Mom that goes into the school to help in the classroom? The mom that fund-raises with enthusiasm and is active in PTO? Am I the Mom that cleans, cooks and does laundry all day for her family? Am I the Mom who has a green thumb and spends her day in the dirt gardening? Am I the Mom that will begin working again after all these years?

What kind of Mom, Wife or Woman am I now?

I have learned so much in the last 11 years. I can rattle off types of medicine, tell you if it comes in IV form, its uses, ways it needs to be administered and alert you to the side effects you may experience. I can tell you of different types of bacteria, antibiotics that will treat it most effectively and even lab ranges off the top of my head. I can teach you about the kinds of seizures, neurological and gastrointestinal function, physical, occupational, speech and feeding therapy methods. I can share with you what specialist to see for what problems, which ones are best at what, which ones were most helpful and those that were not. I can quickly drop an NG tube into a screaming, squirmy infant, put an expensive custom contact lens in a 2 year-old's eye, negotiate a deal with a child filled with more anxiety than you can imagine, talk a child down from an intense fit all the while keeping a sterile field. I can change a g-tube, give an injection, do sterile dressing changes and change a supra-pubic catheter. I can transfer a limp child that has tubes extending from various parts of their body with heavy bags attached to them in just a few minutes. I can troubleshoot a ventilator, its heater, IV pumps, enteral feeding pumps, suction machines, electric wheelchairs, among other things.

What do I do with all this knowledge and experience? 

I've been living in the trenches of a different kind of battle for a long time. I'm feeling unsure how to play the role of a "typical Mom" without all the other things that I now know.

I've gotten a lot of suggestions of what I could do. Write a book has been one that was brought up on multiple occasions by many. I won't dismiss it entirely; Wyatt's life was an amazing story. But so far, what I've done is taken a lot of brisk walks, started jogging even. I have finally broke down, turned on Netflix and started to watch the past seasons of a TV series that friends have been telling me I needed to watch for some time now...and I'm totally hooked. I've gathered with friends on Monday nights to drink wine and watch one of the reality shows that we used to watch with Wy. I have a love for wine and iced coffee. (But not together!) I've made myself do the laundry again and redecorated the living and dining rooms. I've shopped. Then shopped a little more. I have even volunteered to make clementines into pumpkins for Jilly's Halloween party at school.

Today is one month since Wyatt died. An entire month feels like a really long time. I think of my boy constantly. I miss him so. I'd give anything to hear him say "I'm boorrred" or "Moooooommmmy" again.


I must thank you all for the outpouring love, continued prayers and support. I've read every email, message and card that we've received. If I have not replied to an email or message, please know I hope to. It's on my list of things that I must make myself do this week. Thank you for taking the time to think of us. We appreciate it greatly and send much love in return.

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  1. There's so much to say and yet nothing that would be just so. Thank you for sharing your experience. Love to you.

  2. Love to you and your family!!!!!!!