Wyatt's Warriors

Together in Faith. Together in Love. Together in Prayer.

Saturday, June 9, 2018

The Perfect Life

Awhile back I began speaking to a member at work, we would see each other often and started with hello's , eventually talking a little more about our families and work. Nothing major but what was a quick 1 minute chat would often be 5 minutes or more. This individual was having a hard time with one of her children who was not following direction and an in-law that was trying to tell her how to parent. I would listen and empathize and one day fairly recently she snapped back at me and said, "you have no idea, you live the perfect life." I stood there for a quick moment, not knowing how to respond. Nobody has ever told me I live the perfect life. I quickly responded with "I have been blessed" and wished her a good day.
This is something that has been with me since and I can't seem to shake. "The Perfect Life". Is she speaking of the glamorous job I have that consumes me everyday of the week day and night. Is she referring to the 5 beautiful children that I have that were once removed from their home and their parents that we had to fight for 3 months and tear through any savings we had and rely on friends and family in order to prove our innocence. The kids that are now in therapy, and probably will be for the rest of their lives so they can make sense of what happened and not fear the very system that is set to protect us. Maybe she was referring to the endless hours I have had the pleasure of sitting in the hospital waiting for my boys to get out of surgery or wondering if Wyatt would be able to eat, hear, see, walk or speak. It could be the moment I watched my 6 week old baby code at the hospital as doctors and nurses came rushing in to revive him. The hours spent online finding the best Doctors and educating myself on all we had ahead of ourselves medically.Perhaps she was speaking of my amazing marriage to my best friend that is coming up on 19 years. The marriage that right now consists of a lot of morning chaos getting 5 kids to 4 schools  within 90 minutes, followed by an evening of passing each other in a brief moment as we take kids to sports games, therapy, school concerts or the hand offs between Doctors appointments and IEP's. By the time the evening ends after baths, homework, and bedtime routines we are both so tired to speak- so we sit in silence only to digest the day, go to sleep and do it again tomorrow. It could be her speaking of my amazing body that I have struggled my whole life with , trying anything and everything to be healthy but more then anything vowing to raise my boys to live and be healthy so they wouldn't struggle or be made fun of through there school years as I was through mine. I am sure she wasn't speaking of the fact that I never experienced grief, as I have watched two very important women in my life die unexpectedly at very young ages and as a result my children missed out on an amazing busia. it surely can't be the 4 years between 13-17 that I have completely blocked from my mind due to an unimaginable trauma, that sends goose bumps up my spine even thinking about and still wakes me in cold sweats.
The Perfect Life- I have pondered this for weeks now with anger as you can probably read above. Then it hit me, she is speaking of the Life that despite everything I wrote above, I live. I make a choice EVERYDAY to live that life. She saw exactly what I want her to see, exactly what I want my kids and family to see. Exactly what I work hard at everyday. Making a conscious effort to wake up with a smile on my face, love in my heart and a skip in my step. She saw pictures of me and my kids at the zoo, getting ice cream, or having scooter races. She saw the pride I have when my son got the game ball, or Joshua finally spoke his first word at age 3. She saw the genuine love and admiration I have for my husband and the choice he has made to be with my boys EVERYDAY when they get home from school. She saw the loyalty I have for a company I have worked for the last 12 years that has allowed me the opportunity to be a mom and a professional and supported me along the way. She heard my very genuine love for everyday that we are blessed to live and the undying Faith that I have in God and his ability to care for our every need.
The truth is I work very hard to live this "Perfect Life" because I believe it is important despite all the imperfections, that we focus on the good. That we remember EVERYONE has a story but we all have the ability add to and edit our story. It's when we let the story write itself and we get consumed in the life that we lose ourselves and our ability to focus on what's truly important. You can go down a rabbit hole that becomes impossible to get out of or you can get up everyday ready to do it again. The Truth is I am tired, so very tired. My heart hurts for so many reasons and tears flow pretty regularly from my eyes. There are days I drive home and want to take a different turn and runaway- but I don't because I have "The Perfect Life".
I am a mom of 5 AMAZING boys that make me smile any second I think about or see them. I am the wife to a husband that no matter what happens, he will be there to hold me or listen to me and after 19 years he is still the person I want to go out with at the end of the day. I have had the honor and the privileged to work with kids and adults over the last 12 years that I have watched grow up and many call my friends. I have had the opportunity to speak to students over the last few years about what it means to chose kind and I have had the opportunity to help me others who in their darkest hours couldn't find a reason- find a reason. I have been able to talk about what FAITH is not by quoting scripture or preaching gospel but by telling real life stories on how GOD has impacted our lives and transformed my definition of HOPE. I have the absolute honor to walk out of my house everyday with my head held high knowing I am living "The Perfect Life"- A Blessed Life but please know I understand. I understand what loss is, I understand injustice, I understand Fear, I understand sickness, I understand trauma, I understand emptiness, I understand uncertainty, I understand anxiety, I understand struggles, I have questioned, I have been angry and I understand sadness. I choose happiness. I choose the perfect life.

Friday, April 20, 2018

I want to be Wyatt when I grow up

Good Evening-

It has been such a long time since I have last posted about my Warrior here.

Let me start by saying we are truly surrounded by such amazing friends and family. I know we all get caught up in our lives and sometimes our lives can seem lonely but when you are in need and reminded daily that people are there to support you, your life does not seem lonely anymore. Suddenly you are reminded that you have an army of people ready to suit up and get the job done.
THANK YOU!!!!!

I wanted to write today because I feel like there is so much to say. The quick update and praise for the day goes like this- Wyatt got up and walked to the bathroom 2x and has actually gotten out of bed every time to go to the bathroom. He is the first kid they have seen get up and move this quickly after surgery. After a very long, stressful and painful two days I do believe we have the right pain management and medication to help him in all the areas we need. Not only has he suffered extreme pain, he has been crazy itchy and very nauseous which makes recovery very difficult. Today was rough, his entire face was swollen and black and blue and he was miserable. He did not want anyone in his room, let alone near him with anything. We are talking full out kicking, hitting and screaming with a wired shut mouth. It was hard to watch for both Tony and I. I am glad we have each other because we could not do this alone.I mean we could but it would be soooo hard. There are many times, I have to hide my face and just speak words of encouragement and understanding, even though I myself am crying with him. Tony will just place his hands on my shoulder and we have that moment of complete understanding.

Special announcement: As I was writing Wyatt told me he wanted to try some juice. Nobody thought he could but I did some reading today about using a syringe to allow kids some soft foods and juices. So I got the syringe and gave him a little juice. He drank it and grabbed the cup and the syringe and did it himself. AMAZING!!!! He tried with a straw but it is super hard to manipulate around the device and very limited space in his mouth to get the straw in. But he tried---ALL by himself. Right after the Doctors were doing their evening rounds and I told them and they couldn't believe it. :) That's my Wy guy. :)

Back to my original message-

If I could be anyone when I grow up, I would want to be Wyatt. He is fierce but gentle, he is determined but kind, he is funny but firm, he is brave but able to say he is scared. He has more FAITH  at age 6 more then most do in their entire lives. He prays and he comprehends. He is a WARRIOR!!!

I came in the room today to them needing to replace an IV that blew. To say he was not happy is a gross understatement. He cried, screamed and in a wired mouth said things like "your going to hurt me" "it's not okay" "I am scared" all while crying bloody tears, kicking and screaming. He felt helpless. I had a moment where I realized I needed him to know he had a voice and decided to change the way we went forward. He is dealing with very "adult" like stuff and I wanted him to make choices.

I had a discussion with him about how I promised I would listen to him and help him be a voice. I explained there are going to be things we have to do over the next few months that we just have to do. We aren't going to like them and they won't always be easy but they are non negotiable. But I promised that I would explain them to him before hand and I would make it as easy as I could because I did not want him to hurt.

I then told him there are things he can chose and I will allow him those choices and will listen and honor his wishes. he understood this, and as the day went on these are some of the decisions and choices this 6 year old made.

Wyatt has 2 IV's because he is on so much medication and some don't interact well with others so separate lines are needed. One of these lines hurts him anytime anyone put something in it. The nurses and Doctors for the last 24 hours basically told him he was crazy there was nothing wrong and it worked and he should just accept it. As promised I listened to him, and I told them this morning that although I understand the line is working- it is hurting him. Something is not right. He is fine with the other but this one makes him cry and scream so maybe we shouldn't use it. They all stopped and looked at me as if this was a revelation- but guess what they didn't use it. They went much of the day- pausing and changing things up to only use the one line. It was very difficult for them to do effectively and efficiently without messing up times...

So now Wyatt had a decision to make- I turned the TV off and reminded him about our conversation and told him he has done great making decisions and telling me his needs but now he has a big decision to make and its going to be hard. I explained that they really need to place a 2nd line to make the nurses jobs easier and his life more pain free and scheduled. But it would hurt him for a few minutes, I explained would get the best guy to do it but it would be a poke. I told him I thought it would be best for him but the decision was his and with tears in his eyes, he shook his head yes. And he sat still, he wasn't happy and he still verbalized his discomfort but he did not fight it and that is the moment I decided I want to be him when I grow up.

All day he got to decide if I could wash his face, Ice his face, put chap stick on, sit up, stand up and he could tell me when enough was enough and I would stop. He also had moments that he had to be suctioned, medicine had to be given, feeding tube had to be moved and I explained there was not choice and he understood. At 6 years old..... I

State of the state- We are still in the Pediatric Intensive Care Unit and will probably be here until Monday. Then we will move to the main floor. I realized today that I was crazy to think I could leave Sunday and even crazier to think one of us was going to go home today.... Thank goodness for all those especially my Mom and Pat who have managed the house all week with 4 boys going 4 different directions. Anyway- they agreed to stay through Monday now- giving me another day with my boy and hopefully transition to the main floor. Tony will stay through the duration but I will be returning to work Wed and try to balance everyone else and work for a few days.

The hospital team here continues to amaze us- so kind and caring. You actually feel like you are the only one they are caring for. It's crazy - and I have been to a lot of hospitals.

I know I have said it many times before but the Ronald McDonald House charities are so special. They provide a home away from home and fresh cooked meals for families daily so they don't have to worry about food and eating in a hospital for long periods of time is expensive. They have all the toiletries you could need, caring staff to talk to and play rooms for kids. If you ever can volunteer to cook a meal or drop of donations like toiletries, snacks... please consider the Ronald McDonald house.

Thanks for listening to how AMAZING my Warrior is- I know I am a little biased. :)

Pray that we have really found the correct medications to effectively manage his discomfort and nausea. Pray for rest for all of us, and understanding from the older kids as we extend our trip another day or 2. Wyatt has been hypertensive today so lets pray that regulates itself and the bleeding continues to lesson and that I get even half of the bravery this child has.

Have a good night- until next time. :)

Love from Dayton




Tuesday, April 3, 2018

For those not on Facebook.

Happy Thursday- we are bringing back this page as we have some updates and prayer requests.
1. Wyatt's Asthma has been really bad the last 2 days. Pray he gets some relief this evening so we can all sleep well.
2. A week ago Wyatt had what appeared to be a blind seizure while in speech class at school. We have an eeg scheduled next week. Followed by a neurology appt the following week. Please pray this all checks out well.
3. Most importantly over the last few weeks we found out the need for Wyatt to have his bone graft for his jaw was more immediate as he has no space in his mouth to breathe. He is breathing primarily through his nose. After further discussion it was decided to have another jaw distraction on the opposite side to losen the mustle and open the mouth wider to make the graft surgery easier. This is the surgery where they use the Red device that prevents him from eating and talking and we a
Screw the pin in each night to widen the mouth. He had this once before and it was so hard on him. After he has this on for 4-6 weeks we will then have the free flap scapula graft where they will take bone from the shoulder to build the jaw. This a long articulate surgery... :( with another 4-6 week recovery. Wyatt has decided to get it done now in hopes to be recovered by end of June and enjoy the rest of summer. He has been very nervous about this for a couple weeks which is hard. We gave him pros and cons for when and let him decide. His teacher at school is amazing and offered to come to the home for his in home schooling 2 hours a week through the end. The first  surgery is now scheduled in ohio with Dr. Gordon april 18th, we will leave the 17th for orientation and to get settled. We have to work out care for the other 4 boys for a week but the rest of the recovery we will do from home. There are a lot of variables that need to work to make this work out accordingly. We still need one more ctscan next week of the scapula and approvals... please pray it all comes together like it always does and peace for Wyatt and the family as everyone cares ans worries for eachother.
We will keep you updated as more information comes available.
4. We have decides to celebrate Wyatts bday april 14th so he can enjoy cake and ice cream with friends and famiy before surgery.
Sorry for the book and thanks ahead of time for prayers. #blessed

Sunday, February 9, 2014

AMAZING





I haven't even began writing and my eyes have already filled with tears.

 I am so blessed to be the mother of Wyatt. He is such a WARRIOR and makes me smile from ear to ear everyday. When I think about the last 6 weeks or people ask me how he is doing the only word I can come up with is AMAZING!!!

The first three weeks after the initial surgery Wyatt was miserable and I had feared we had forever lost his spunky personality. FEAR not, for he has returned every bit as spunky and cute as before.

He looks so different to me. He has this big glorious chin and his gorgeous smile and he plays with the tongue he could never really manipulate before. It is so cute to see. He laughs louder, plays harder, smiles bigger than ever. He is eating almost as he was before the surgery, just taking it slow and soft but he wants it all. :)
We were able to remove his feeding tube on Friday morning and he is keeping up with his nutritional needs with milk, eggs and cheese the majority of the time. Throw in some goldfish crackers and Cheetos's and he is one happy boy. LOL

He is keeping up with his brothers and wants to do everything they do. He is jumping off the couch, bed and running down the hall chasing the dog every minute. He even climbs up on the kitchen table chairs to get what he wants off the counter. TROUBLE

The hard part is he does all this and gets away with it because he is just so darn cute. He signs please mama and I cave every time. He has a serious love affair with DORA it has not ended since our return. In fact the other night we got home late from running around and I put him to bed without him being able to watch Dora and let's just say he wasn't having it. I finally told Tony to go get him and turn on an episode or he will never go to sleep. Sure enough he watched it and went right to sleep. He has been doing really well transitioning to his toddler bed. I would say 70% of the time he has stayed there all night, there have been a few rough nights of calling out for mama that ultimately resolved by him joining me in our bed.

This last week was difficult for me to get back in the swing of things. It was full force at work as we are gearing up for mid winter break camps. daddy daughter date night, a large group event and a summer camp registration fair. Along with this we had conferences for the older boys, a doctors appointment with Joe as he is really struggling in school and we are trying to get him the help he needs, tons of insurance and Dr. calls to follow up on Wyatt including getting him set up for speech therapy, a lot of snow, an unexpected day off school and to top this all off we decided why not put the house up for sale in the middle of this craziness. Oh yes we did. :) I am starting to think my mom was right we she told me to enjoy the simplicity of Ronald McDonald house life. LOL

We have been praying about the house and schools for the boys for quite some time and a few things happened recently that made us think maybe now was the time. We wanted to get our ducks in a row make sure we could get pre approved for mortgage and get what we needed out of the house and once those two things were confirmed we decided it must be a sign that now is the time.  So tonight our house is officially for sale.

It's funny we are involved in a parenting bible study at church as well as a special needs bible study on Wednesday nights and lately there have been so many topics coming up that I can't help but bring back to Wyatt. Today we talked about Jesus walking on water and how Peter wanted to and asked Jesus to help him walk on water and when Jesus told him to come and he had faith and trusted Jesus he was able to but the moment his faith started to waiver he started to sink and needed to plead with Jesus to save him. My faith starts to waver all the time when it comes to decisions we make for Wyatt. Sometimes I forget that we are led and just follow. I make the mistake of thinking I have control when I really don't. Jesus has shown us in so many ways that he is with us on this journey and all we have to do is believe in him, turn to him and trust in him and he has it. I asked myself today if I were out on that boat and Jesus told me to "come" would I and I honestly can say I would. That was really neat to not even second guess it but know it. Doubt can be so evil but we always find ourselves doubting choices or decisions we make. I know I struggles a great deal with whether having this surgery was what was best, even questioning it as he was in the operating room but the moment the first Doc showed me his airway to the moment all the Dr. showed us his new and improved airway I knew it was right. Despite how difficult it was to get there, it was what he needed, where he needed it.

Wyatt has taught me so much as a mother, wife, manager and just a compassionate human being. I am so grateful to be his mom and be with him on this journey. I know anyone that knows him will be blessed in his presence as he just brings that upon the room naturally.

Thank you to everyone who reads about him and follows our family. At work this week there were many people that have been following along that I had no idea, it fascinates me to see what impact a simple blog can make on lives but am touched and humbled. Thank you also for all the meals this last week and a half. It was perfect as we got back into the swing of things. I am  hoping I can keep up with the delicious meals we have been enjoying from the church families. I also am a tad behind on my Thank you notes but hope to be caught up by next week. I am so honored to be writing so many thank you's to such wonderful people who have chosen to touch our lives one way or another. THANK YOU.

I am also posting a link to a video I did on Wyatt's journey. Some of you who follow on facebook may have seen it already. I hope you enjoy watching it as much as I enjoyed making it. I have also added a few updated pictures.

http://animoto.com/play/W4L5a276enfMSKGFMJUgqQ

Please continue to pray for our family as we get back to a routine, please pray we find the right buyers for our home at the right time, please pray Wyatt continues to get his nutrition through eating and continues to improve daily. Please pray for the older boys who rightfully struggle with our decision to move that they may come to terms and realize ultimately we are doing this for them. And please pray that we continue to trust and have FAITH in Jesus as he has and will continue to provide.

All our love today and always,

Tony, Melissa, Joe, Noah and Wyatt  (LIVE FROM MICHIGAN :)





Sunday, January 26, 2014

A Family is Stronger Together

Good Evening from Cincinnati!



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


Tuesday, January 21, 2014

WORN but FAITHFUL :)




                              Wyatt petting a snake from Newport Aquarium that visited RMH

This is Wyatt running from me and thinking it is hilarious.
My boys together: Joey and Noah are so good with him. 















Jeremiah felt that way when he cried out in Lamentations 3:49-51 – The tears stream from my eyes, an artesian well of tears, until You, God, look down from on high. You look and see my tears. You listened when I called out, ‘Don’t shut your ears! Get me out of here! Save me! You came close when I called out. You said, ‘It’s going to be all right.’ “You took my side, Master – You brought me back to life!
I am officially WORN. I find myself tearful about everything, my heart is heavy, my bones are weak, I am anxious and tired. I am homesick and feeling alone.
This reminds me to remain diligent in my FAITH and rely in the one thing that has got me through the last few years PRAYER. Such a powerful and simple tool that so often gets overlooked. I pray about everything regularly, but have I reached out and prayed for myself and my strength?  Nope and here I am WORN. How easy it is to forget that finding the time, not finding but forcing the time to be with the LORD is the time we NEED to find the comfort we so DESIRE. If we truly commit to praying and listening to him, we will find him. He is there. He has always proven himself to me. As if he had not already by dying on the cross for us, to bare our sins, our struggles.  He never feels overwhelmed, he can shoulder the bourdens of the world,  he died for us so we could turn to him in our time of need. 
Jeremiah prayed until streams of tears came from his eyes. He did not stop or even rest, he would not stop until the Lord looked down upon him. Jeremiah decreed, “I will cry unto God until he sees from heaven”. Jeremiah was praying not only for himself, but for his family and friends and the people in his city. Jeremiah declared before God” What my eye sees upsets my heart, and I am upset because of what happened to all the people in my city”. If we love God’s people as we should, their troubles will make us really sad, and we will petition before God on their behalf.
This especially struck me this weekend. I am surrounded by such hurt and am some cases hoplessness. This is a house full of parents and relatives of children that are sick, hurting and in some cases dying. Everyone's stories weighing heavy on my heart almost to the point that I would rather stay in my room then venture out and meet a new family or hear more stories. I spent sometime with a grandmother who knows the Lord by has lost all hope. I was able to speak to her in length about how powerful he is and how he has worked in our lives. I would like to think it helped. How said it would be to NOT have FAITH. How do those parents/relatives live day by day. If I am drained but full of Gods GRACE and HOPE, how they must feel not having that.
Turning to the BIBLE tonight for the guidance and the STRENGTH I need to keep going and GRATEFUL that my FAITH has never wavered. 
Wyatt is much happier. He laughs and plays and is running around this place like he owns it. He is sleeping well (no naps) and still watching DORA every chance he gets. 
We had another trip to the Emergency room on Saturday as one of his wires broke connecting the device to the pin in his jaw. Unfortunately the Plastic guy on call didn't really know what to do and I found out today when I went for a check up he did not tighten the tension enough. I am told not to worry that it "shouldn't" effect anything but of course I am feeling a bit frustrated. I was able to get back and tighten it a bit myself which he did not like but they were happy the bone to solidify enough yet preventing me from turning. 
I was reminded this last week why it was important to be here at the Ronald McDonald House. Between the NG tube, the wires, the pin sites and watching how Wyatt is with Joey and Noah. He is a risk taker when they are around which he can not be with this devise. It is funny because I have been trying to make excuses as to why going home would be better and every time I start to think about that something happens. I guess I should stop thinking that and maybe things will stop happening. It is another example of how God answers us in ways we least expect we just have to listen. 
Wyatt is funny he keeps trying to take the devise off as if he could. He will pull at the top and at the pin sites, which hurts him but he is diligent about wanting it off. He will say "Take this off". I feel bad but applaud his efforts and understand the want for it to be removed. Since he has been feeling better he has been wanting to eat and drink which is difficult for me to tell him no and difficult for him to understand why? He hates being hooked up to the feeding tube he keeps trying to figure out how to unhook it and he will sign "please" which breaks my heart. 
My original plan of potty training him and teaching him a lot of signs has gone out the window and makes me laugh thinking about our time here thus far. Let's just say priorities are different, and I will say he know more signs then I thought he did and now that he can't talk he is relying on them. 
So I am on my own this week, but I see the end. :) Next Monday his surgery is at 11am, we have to be there at 9:30am. There is a lot riding on this surgery. The Doctor needs to be able to remold the jaw with the bone they gained making it proportionate and allowing Wyatt the ability to close his mouth and swallow so he can eat again, without loosing the airway we gained from the distraction and without needing to go back and do an upper jaw distraction just like the lower. Also the ENT will go in and remove the adenoids, scope the airway and see if any of the excess cartridge needs to be removed. Then we pray for fast and safe healing and home we go by mid to late week next week.
Today I have a lot of important prayer requests;
Please pray for my niece Natalie who is 2 (a week younger then Wyat) and has had to have 2 surgeries to scrape out an infection that she has in her hip. Please pray that it heals, has not spread to her bones, she can begin to bare weight, and for the entire family to be reunited as we certainly understand the burden of being apart. 
Please pray for Tony and I that we can find our relief to our burden through prayer and remember" We can accomplish all things through Christ who strengthens us. "
Please pray for Joey and Noah who are feeling just as WORN as we are and cried themselves to sleep lastnight missing their mom and baby brother. Please pray for their strength and the power to feel our love from a distance. 
That Wyatt may understand or be less frustrated at his inability to eat, drink or talk. 
That the surgeons working on Wyatt Monday have the POWER of GOD ALMIGHTY behind them as they perform the work we intended all along.
For all the families who are apart due to illnesses, that they may gather the strength needed to carry on and be the best they can for their family. That they can rely on our LORD for strength and feel the HOPE that only he can bring. I can tell you families are stronger together and I see why the vow to be together forever is important and true. 
In closing I am copying from Darrell Creswell as he  writes so eloquently what Jesus has done for us. 
Jesus carried the sins of the world on His shoulder, and laid down his life for us that He may bear our sorrows, carry our burdens and renew our strength. He is never overwhelmed or inadequate to supply our needs.
Let your heart shout with joy in our wondrous God. It is only God who can make all our failures regenerative. He will raise you up – just as He himself rose from the grave. It is He who is God of risings again, and it is He who wants to give you a fresh start. We stand assured in Christ Jesus, serving a God of genesis and re-genesis. He takes all your life’s pain and sorrow, and bears them in His blood, leaving them dead and decomposing.  God will refresh your world with spiritual dew, and He will hydrate your broken, shattered heart with his renewing spirit. He will lift you up, restore you and bring you back to life.
John 10:10 Jesus said -I have come that you might have life. My purpose is to give you a rich, happy and satisfying life.

Love From Cincinnati,
Melissa and Wyatt




Wednesday, January 15, 2014

Unconditional Love


                                               Thanks Aunt Sharon, Love this paint book
                                                           Loved this in the playground


                                                               He loves to swing! :)
                                                             Look how far that jaw is :(

                                                           Ready for bed, just missing my mama

 
Should have removed the price tag- but love this

Love this to, again sorry about price tag
Maybe I left it so Tony realizes how cheap they were. LOL


Good Evening from Cincinnati!

Wyatt is truly inspirational, there is so much I have learned and can write about him. We were blessed to have the family together this last weekend and Wyatt really perked up. I sort of felt like he was relieved he still had family outside of me. LOL

The boys were so loving and gentle toward him, they felt so bad for him. I was going to spend Saturday with the older boys at the museum thinking they needed some mom time and Noah said to me "Wyatt needs me, he is sick so where he goes I go. If he stays I stay." We are raising these boys right.

Joey insisted on sleeping with Wyatt and let me tell you Wyatt does not let anyone sleep with him other then his mama. But he allowed Joey to, and Joe really took care of him. It worked until about 3am and then we had to make a switch but it was nice to have 5 hours of sleep with my husband for the first time in 3 weeks.

Our sleep schedule is all off. My mission this week was to get back on schedule and let's just say Mission Failed. Wyatt does not fall asleep until nearly 11pm and then from 11-4pm he is restless, moaning, uncomfortable needing to be held.... At about 4or 5am he sleeps pretty good with just a few interruptions till 10am. He will NOT take a nap. I don't understand this because he is tired. I do know he can't get comfortable. He generally sleeps on his tummy and he can't. he can't sleep on his side and he gets tired of laying flat. On top of all that he has his feeding tubes all around him getting caught in his hands as he sleeps....

He is walking and running really well. He is even back to throwing fits when he doesn't get his way. He does not want to do much of anything other than watch DORA. I think in some ways this is good because he can't get hurt watching Dora but I also worry about him not getting out and being social and playing. I try to make him get out 2x a day to the playrooms but most of the time it is a struggle.

We were able to get out yesterday as the weather was sunny and 55 and they have a nice little playground. He enjoyed it but I didn't last long as everything was making me pretty nervous. The last thing we need is an injury.

Today we got back from a shuttle trip to Meijer which was nice to get out and within 10 minutes of our return Wyatt pulled out his NG feeding tube. Because of his airway this led us to the hospital where I knew we needed to go to radiology to have it placed, but plastics had to talk to ent, ent to pulmonology and then back to the ER. This took 3 hours of waiting in the ER where I did not want to be in fear of sickness. So I put Wyatt and I to work disinfecting the whole room, stroller and purelling our hands which he really enjoyed. Once we got to the right place it only took about 20 minutes, of which Wyatt was very upset.

It's funny as I was sitting with Wyatt in the ER, he wanted me to hold him close and we rocked and I sang. The whole time I was thinking about all this child is going through and now he is going to have to have this tube placed and he can't eat or drink and talking is difficult and everyday we are cleaning, turning, feeding, suctioning, medicating.... He hates every moment but no matter what fight he makes, at the end he just wants his mama. He grab holds of me and won't let me go. I am the one taking him to the hospital, Doctor, being his daily nurse, forcing him out to play, handing him off to surgeons, holding him down during x-rays and NG placements and all he wants is to love on his mommy. I have spent the last few weeks feeling horrible and helpless and trying to explain to him what's going on and why. He doesn't understand any of it but he understands unconditional LOVE more than anyone I know. He doesn't need explanations, excuses, reassurances nothing. He just looks at me and signs "I Love you" and reaches out to hold ME. Almost as if he feels bad for me. Is that not amazing. We could all learn from out children. I sure did today and many days. That was my lesson of the day.

God continues to Bless us in so many ways. Friends at home helping with after school pick ups, meals, dog watching. Friends in or around Cincinnati visiting, sending letters, gifts..., having help during the hardest weeks between my mom and husband.

I also had the privilege to speak to another mom who has a daughter who has gone through similar surgeries here in Cincinnati by the same Doctor. I spoke with her Sunday afternoon and one of the things she mentioned was that the Doctor had talked her into to doing the upper jaw right after the lower and she regretted it a bit. She wished she would have waited to see how the bottom jaw had settled. Sure enough on Monday I was posed with the same scenario, the Doctor had asked if we wanted him to use the same device and do the upper as he finished the lower. How DIVINE was it that I just had this conversation. Allowing me the confidence in saying no, let's wait. I am very concerned as of recent that we pulled the lower jaw out to far. He can no longer close his mouth, his upper teeth are so far back that I can't reach them. The further we pull the harder for the upper and lower to reconnect and for him to eat and drink without adjusting the upper. After laying in bed, praying and looking at Wyatt I have decided to stop turning the pins a few days early. I feel confidant in this decision and almost lead. I don't often go against the Doctor but for two days I am.

My last though that I have been struggling with is "pity". Wyatt looks like he is in pain and his face looks awful with his jaw pulled so forward and he is drooling like crazy. So we get these "awe" looks, or turn away, and even kids who will leave the playroom when Wyatt arrives. I am struggling with this as a mom. Wyatt doesn't even realize it's happening but I want to shout out he is just a 2 year old wanting to play. Then I started thinking about how often I may turn away without realizing it toward others for different reasons.

I hope you enjoy my pictures. I also added 2 pictures I bought today at Meijer on clearance that I can't wait to hang in the house. :)

Love from Cincinnati.

Melissa, Grandma and Wyatt