We are gearing up for another big surgery tomorrow morning. Wyatt will arrive at 9:30 and is scheduled for 11:00am surgery. The ENT, Pulmonologist t and Plastic Surgeon will once again all be a part each with their own integral part. This surgery seems a bit more critical as we are looking for that end result making the last 5 weeks worth the wait. We need the jaw to be reformed so Wyatt is able to close his mouth without such an overbite allowing him to eat and avoiding needing to redo an upper jaw distraction. We need to accomplish this without compromising the airway we gained through the distraction. We also are removing the adenoids and the access cartilage as a result of the larengomalicia and then scoping the airway to hopefully see a pretty wide opening avoiding the need for a trach.
I'm not sure if that seemed overwhelming to you, but to me it does. I have been telling myself all day no worries, just FAITH. I believe it but man it is hard as a mom. I have spent the last 5 weeks, pretty much 24 hours a day trying to make my boy happy, feel loved, supported, and important. I have devoted every moment of every day to him. I want and NEED this to work. Luckily it's in Gods hands but I am going to be sure to let the surgeon know he can't mess it up. I will do my part, God will do his, but he better go in there with his A game. :) LOL
So i am not sure if I wrote in my last entry that I had reached this point about a week ago where I am worn, tired, mentally exhausted, tearful... I feel like I am failing at making Wyatt feel good and helpless for him, I know my older boys NEED their mom as they cry themselves to sleep some nights wanting to know when I am coming home, and lastly my husband and our marriage. I am so blessed to have a partner in all we go through but it is hard to keep things together everywhere, all the time. To make everyone feel as important as they are and to take care of yourself at the same time. I was feeling down most of the week, just ready to be done. I found myself focusing on two thoughts.
1. Whenever I find myself feeling down, I like to turn it around and see the Blessings around me. Luckily I am able to do this clearly most of the time. This time I reflected on the families I have met and been a part of their stories over the last month. Some of these families have been here for 6 months or more. Some have lost jobs, see their husbands maybe once a month, gone through divorces as a result, grandma's have retired or quit jobs to come down and support mom's with siblings while others are in the hospital. There are kids dying, or losing their battles, their are parents challenging their Faith and feeling Hopeless. The list goes on. I know I mentioned that I sometimes didn't want to come down to dinner because I would feel burdened by everyone's stories. But I do come down because I know of at least 2 families I know I impacted them in their Faith. These two families felt alone and abandoned by OUR GOD but now have their Faith restored just by hearing Wyatt's stories. I think of my months in NICU when Wyatt is born and the day I almost lost Wyatt as I watched him code in front of my eyes, or the day another baby sharing a NICU room with Wyatt passed away and I watched as the parents learned their baby had past. I think about the news we hear every night where people show up randomly and end peoples lives just because, tearing apart families. People say how do you do it? How do you not. How blessed am I to have a husband that I can call a friend and never puts pressure on me to be someone or something I am not, to have kids that miss me so much they are crying for my return, to have a 2 year old who won't sleep or go anywhere without his mama, to have a place to stay where I can focus on him and him alone without the burden of meals, or general necessities at a rate of $25 per night. How blessed am I to know the LORD and never feel HOPELESS. To have friend and family that have not only supported us in prayers but financial needs and caring for our children, home and the list goes on. To have a school community preparing meals and a church community offering gift cards and more. To have a job that allows me the opportunity to leave and be confident I have a place to return to. For Tony to have a job that has been flexible with his schedule allowing him to be here for the surgery and off earlier to get the kids each day. When you think of all this it is hard to feel down, it sure is easy to feel BLESSED. As I pondered the thought of leaving this week, which believe me even though I am Blessed I am ready. :) I thought I will miss it. It became part of our journey. I have good, sad and bad memories here. I made friends and met people from all over. I never had to worry abut meals or things for Wyatt to do. I had the peace of mind knowing the hospital was right next door and family a 5 hour drive away. I also had visitors I had never met before offering support from our church community back in MI. What an opportunity I have had. And although I am WORN, I am BLESSED. :) Thanks be to GOD!
2. My 2nd thought I pondered is the power of FAMILY. A family is by far stronger together than apart, but a strong family can be apart and still feel together. I know seems a little silly but you hear so often how marriages are often troubled and families come apart when dealing with life long illnesses. I know it has only been a couple of years for us but I never felt that threat. Quite the contrary I have always felt like decisions are made together and agreed upon as a unit. We have not always agreed but have always heard each-other out and ultimately coming to the same conclusion. Our kids although sad we are apart are happy and understanding. They know what is happening because we tell them every step, making them a part of what is happening. They ask to pray, they want to talk with Wyatt, they are concerned about him and want to spend time with him. They don't like our separation but they get it. They never made me feel guilty, always understood. That is true strength. One of the most difficult things for us during hospital stays has always been juggling the kids. Who takes them to school, picks them up, stays with them, feeds them.....Often time juggling multiple helpers and they are champs through it all.
Along the same lines, my mom keeps reminding me how crazy our everyday lives are. Tony and I working full time, kids in activities, church functions, bible studies, cooking, cleaning, kids fighting... never having enough hours in the day. She keeps telling me to enjoy this time. I laugh because I miss the craziness of our lives. I will remember this because I am writing it and will read it again and again. But I would much rather have the hustle and bustle of the crazy house, getting kids everywhere, dealing with fighting... and be together than being separated. THAT is STRENGTH. I am BLESSED :) Thanks be to GOD!
Everyone has a story, nobody's life is worse than another s. Your life is what you make of it. Be grateful for what you have, trust in the LORD and you will have all you need to get through. Next time you think someone's got it easy, remember everyone has a story.
Thank you for all the prayers for my niece. The infection did not spread to her bones and she was able to go home on Friday and is given IV antibiotics through a PIC line 3x a day for a couple more weeks. That was a scary week for everyone involved and I know they appreciated the thoughts and prayers, Please continue to pray that the infection improves and she is able to regain all of her mobility.
Please pray for Wyatt and the Doctors tomorrow, so miracles can happen. Please pray for my sanity as I wait. I am not a good waiter. :) And a quick healing, relief for Wyatt having the contraption gone, for the older boys as they get through these final days without mom and dad.
Thanks for your support. Feel free to share Wyatt's story with anyone and everyone. It has been fun to hear from people I have never met but follow his journey. I love the thought that maybe one thing I write impacts someones life in some way.
Lastly, I apologize No pictures today as Wyatt broke my laptop this week :( and I have to use the computer at Ronald Mcdonald House which will not allow me to save them . I choose an oldie but goodie in honor of him getting the contraption removed tomorrow.
Love from Cincinnati
Tony, Melissa and Wyatt
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