Tanner!

Mr. Tanner is now a teenager, how is that possible!? Past birthdays have never really been a big deal to him other than the parties and the gifts (of course :) ) but this one was different. For the past few months leading up to his birthday he made people aware that he was about to turn 13! He has made a lot of changes in the past year, some I was not ready for. I wanted him to always be my little boy, he suddenly went from what seemed like a little boy to a teenager with a little more independence which is a good thing I suppose. Tanner has brought more joy to my life than I could ever have imagined. He has been through a lot the past few months but he takes it in stride and has been such a trooper with it. Tanner has taught me so much about love. I wish I could see everything through his eyes. As I reminisce over his life and recall the day he was born and then his diagnosis and how hard that was at the time, now setting here looking at it and realizing the magnitude of what God had blessed me with in giving me Tanner makes me smile. He has brought more joy than I could ever tell. He and I have been through some tough days together, but we have also known great blessings. As each day passes the more I realize how much I really am blessed to have Tanner. I tell people that every family needs a Tanner! He loves church and Sunday School, he enjoys reading his bible - his favorite verse is about Dog’s, imagine that! He asked his Sunday School teacher if there were dogs in the Bible, she showed him the scripture and he has not forgot it! We took him on “the town” for his Birthday, along with some of his favorite people, his cousins! We went to Mellow Mushroom, his favorite eating place and then to Academy. We went home afterwards and ate his “CIA” cake and opened gifts. He had a great time. Happy Birthday Tanner, we love you more than you’ll ever know, and we are so proud of the little man you are becoming!

Lincoln James

This post is long overdue, and it will be a very short version of the story. I plan to write an actual post about this in the near future.  Lincoln James joined our family April 26th, 2017 in Ohau, HI.  He was not even two days old. He completed the puzzle to our family, and we are overjoyed with the little guy! We were abundantly blessed again by God!

Update on Tanner: Tanner is doing amazing. He has had 12 esophaguel dilations at Vanderbilt Children’s Hospital.  God placed us in the path of some amazing Doctors. We feel they have been the hands and feet of Jesus in helping Tanner. Tanner is now eating solid foods after 4 long years of only eating puréed food, he is eating things he had never ate his entire life, and he loves it! God has truly performed some miracles in Tanners mind and allowed him to realize food was ok, and that it wouldn’t hurt him. We have enjoyed watching him eat, but most of all being able to set down and eat with him. He loves his Doctor there, and loves to go to Vanderbilt! The truth is we all love them, the staff there is amazing and they feel like family to us. We are ready for Tanner to get the surgeries behind him, but will honestly feel a little sad to know we won’t get to see the good people of Vanderbilt as often! God has been so good to us throughout this journey with Tanner!

Every step is a learning step.

My prayer has been for the Lord to make me a soldier, teach my hands to war, be a witness, have a servants heart, be a help and encouragement to others around me and so many other things. I wanted to be more like Christ. I didn’t realize that God would choose to answer many of those prayers through a trial that tested me to the very core of my emotional being. I set as a mother and watched my “special” son deteriorate right before my eyes not knowing what was wrong and wondering what the diagnosis and/or outcome would be. I started evaluating my life and my priorities and realized there were many areas that I needed to move up in and make sure God was first place. While setting in the hospital one morning during Tanner’s first hospital stay I felt God speak directly to me through my devotional. He showed me some things He wanted of me so I could be more like Him. I may have given up a few things, but I untimately gained so much more. On September, 30th 2017 I experienced an emotional shock with a diagnosis that I thought the radiologists in Paducah hospital was giving to me concerning Tanner that resulted in me becoming a lifeless figure laid across the hospital bed. As I looked across the room at Tanner I wondered how we had got here, and how I could take the next step and possibly ultimately say goodbye. Tanner was transferred by ambulance later that evening to Vanderbilt Childrens Hospital where the doctors started working to correct the issues he had. I had felt like God had spoken directly to me through scripture and had given me a promise with the definitions in the scripture, but I couldn’t get my mind, body, and spirit to agree with each other. Once we realized that his diagnosis was most likely not the worst case scenario my mind still could not get over the shock I had felt, I couldn’t absorb it. I continued to pray and read the scriptures I felt God had given me over and over, pleading with mine own self to believe and accept this could get better. God continued to confirm to me through scriptures over and over what He was trying to tell me. I wrote these scriptures down in my prayer journal and took them to surgery with me, I was doing my best to lay the burden at His feet.

I never dreamed I would set and watch my son not be able to eat or drink for days. I didn’t know my heart could handle such. I didn’t know I would ever watch him wake up from surgery hollering in pain and look at me through pleading eyes to take it away. I didn’t know that watching a milky formula run through a tiny tube to his stomach would make my heart want to burst with joy. I didn’t know what 4 ounces of apple juice would mean. I didn’t know that a smile at 5:30 in the morning would mean the world to me because I knew the smile was coming from the fact that he had had 6 ounces of nutrition in his belly after having been so hungry from not being able to eat.
As we continue our journey with Tanner I know I will learn many more things and be changed in many more ways, but let me list a few things I’ve learned so far....


I’ve learned that God loves us with an unconditional love.
I’ve learned so much more about prayer.
Ive learned that God gives grace for every need.
I’ve learned I shall never leave my post of duty He has called me to no matter how I feel. I must stay in His will in the hard times, the tired times, the frustrating times, the busy times, as well as the good times.
I’ve learned He is a friend that sticketh closer than a brother.
I’ve learned what it feels like to rest in Him.
I’ve learned that He will allow you to get close to the edge of breaking, but He won’t let you break.
I’ve learned the value of Godly friends and family.
I’ve learned that serving Him is what I am here for.
I’ve learned that when you are walking in the fire you won't be burned, and that you are not alone.
I’ve learned what it feels like for God to carry you.
I’ve learned a lot more about compassion.
I’ve learned to be more aware of the needs of others around me.
I’ve learned so much more about trust.
I’ve learned to get the good stuff, we have to go through the hard stuff.
I’ve learned, I’ve learned, I’ve learned, and I’m still learning, with every step I’m learning.


Tanner's welcome home sign in our front yard after his 11 day hospital stay

Life unveiled. His life. Our life.

This is a subject I've longed to write about for a very long time. I kept rolling it over in my mind because I really didn't know how to write it and make it sound like I wanted it to sound,  but I am going to try. This is a story about a boy who moves at a slower pace than most. It's about a boy who has taught me so much about love. This story is about Tanner, His life, Our life. 

Some over twelve years ago a little boy was born, his diagnosis of Down Syndrome left us feeling heartbroken for months. I will never forget the doctor bluntly telling me that he unfortunately had Trisomy 21, I thought it was a death sentence. I gently handed him back to the nurse and walked out of the NICU. The days of agony and grief that followed will only be truly known by my mother who spent her days and nights trying to comfort my broken heart. I wanted Tanner to be "normal". He was eventually released from the hospital and we were able to take him home to meet friends and family. As time went by I realized that he was a blessing, a perfect gift that God had given me. The diagnosis no longer controlled me. I embraced it with determination that he could, and would do amazing things. As time went by I also realized that our family was different, my child was different therefore it made our lives completely different than any of our friends or family. When Tanner was a baby I spent my days caring for him, the PT at the hospital showed me some home therapies I could do to help with his low muscle tone. When holding him we had to make sure and support his neck because he had very little control or strength in it. We opened our doors for therapists to come in and do all they could do to help him. As he grew a bit older and started walking I then had to watch him constantly to make sure he didn't wander off. Then Perry died, life suddenly became even more challenging than ever. Thankfully I had family I trusted to help care for Tanner, and we all navigated through the ups and downs together. Tanner finally reached an age where we would attend birthday parties. I soon realized how much I hated attending these parties...let me explain - I go to a party and while all the Mothers set and visit while their children play, I follow my son around trying to help him climb up the toys while the other children romp around climbing, playing, jumping, and running (many much younger than Tanner) I look around and suddenly feel completely isolated, I am alone, Tanner is alone, it's becomes just us attending the party - the party comes to a close and I meet back up with the mothers and bid my farewell, go to my vehicle and help Tanner in while tears are blinding my eyes, lean over the steering wheel and get my composure enough to get out of the parking lot and drive home. So often I simply make an excuse and we don't go, I don't want to face the isolation I feel. I go to a function at a park, at someone's house, at our church, I never rest. I have no idea what it's like to pull up a chair and visit like everyone else, I'm constantly on high alert making sure Tanner is ok. Ok so let me explain that part. People don't understand why I have to watch him so closely. I had one individual tell me not to worry, just let him go, it'll be ok - no actually it wouldn't be ok. Opinions and people's ideas hurt to the core when they have no idea what they are talking about, it also makes me feel like I am not doing enough when I am trying to be the best mother to Tanner that I can possibly be. Tanner has ran from me on way to many occasions to even remember, he has took off on foot and headed down the road, he has crawled out of our house windows multiple times, he has hid under the house, got in vehicles all the while while I was trying to watch him as closely as I possibly could. If I didn't take the time to check on him every couple of minutes, I might not would even have him with me today. I love this boy so much that you don't dare think I would risk taking my eyes off of him and just let him be. Camping trips, recreational outings are also very challenging. On these outings we enjoy hiking, bike riding, swimming, etc. Tanner was in therapy for years, they worked and worked to get him to learn the concept of riding a bike, Dathan and I have worked and worked with him - we've spent hundreds of dollars on bikes, special bikes to help him in this area but to this day Tanner does not ride a bike. I will never forget being on a camping trip with several people and Tanner setting in the camper looking out the window while his friends jumped on their bikes and rode off. Fellow campers may have thought I was unsociable, but actually I felt totally isolated because we couldn't join in on the festivities of the trip. I wasn't upset that the others were riding but I suddenly felt lonely, he was lonely. I am not complaining, I want the kids to ride off and have fun on their bikes, I really do. Tanner has matured and we have seen him become more trustworthy in many areas, but our lives are still completely different than any other friends that I have. Tanner can read, he can write, he can do some pretty amazing math figures without any assistance of any kind except his little fingers he uses for counting. Tanner has his own room, his haven, his fort. I go in there and set down beside him and pick up his iPod, I see where he has FaceTimed 12 friends in a matter of 3 minutes. I see where he has texted my phone a picture of a red four-wheeler that he claims is his and he has it for sale. I see where he has put a picture of his new baby brother Lincoln on his iPod screen saver, also where he has texted multiple people begging for someone's mailing address. I walk out of his room and let a few tears fall off my cheeks and I say this is his world, his world, his life and I envy it. He comes out of his room with a smile on his face and asks for another milkshake and bounces back in his room and only worries about getting that address that he asked for or who will buy that imaginary red four-wheeler, while his mom is worrying about the day when his buddies are jumping in their trucks with their girlfriends and riding off into the future, I picture him standing and looking on as their ways part and he goes home, goes into his room, his haven, his fort and picks up his ipad and sends another friend a text - and goes to bed with a smile on his face while mom is in the other room with tears rolling off her face knowing this is his life, our life, and the reality of it is, it's a beautiful life. I have come to the realization I will always feel lonely in the place I am in, I will always feel some isolation, and I know my home is the place I will feel the most comfortable, our haven. I look at Tanner and say if only every family could be blessed with a child with Down Syndrome, but I realize there are only a lucky few that are! I will gladly accept the lonely days that come to be one of the lucky few, don't you ever think for a second I wouldn't! Tanner has an amazing support group of family and friends, and some amazing cousins that will slow down and wait for him to catch up, they will stop and enter into Tanner's world, and spend the day. Life can be tough, it can be sad, the tears can flow but at the end of the day I look at Tanner with a huge smile on my face and say, thank you God for picking me, choosing my family, and blessing us with an amazing boy who's name is Tanner! My mother made the statement to a nurse at the Hospital where Tanner was born that she felt God had something special planned for Tanner, and she was so glad to be a part of it. 

This blog post was not a post to complain, to say set with me when we are together, make your kids only do what Tanner can do, not at all. This post was to open up to you his world, our world. To let you know why sometimes I don't show up, or sometimes I disappear. This little post only covered a tiny, tiny part of our world. Our amazing and beautiful yet sometimes extremely difficult world, but a world we would not dare ask to be different. This is our life, his life, a beautiful life. 

 
 
 

I looked at your picture today....

I looked at your picture today, I felt like you died today. If you've never lost someone close to you, then you will not understand this blog post. In my mind I can hear people saying but it has been almost nine years ago, "get over it" the truth is, I will never get over it. Why am I writing this post...maybe it feels good to just let others know it still hurts and it's something I live with everyday. As I sat in my living room floor this evening it felt like my heart was literally breaking into a million pieces...oh, so are you not happy?  Yes I am happy, very happy and blessed, but at times in the middle of my happiness I am really, really sad....the loss of my dear loved one has forever changed me, I will never "get over" that loss, it is a part of who I am now. I called your phone, your voicemail still picks up, you said you were either on the other line or had stepped out of your truck....the truth is you stepped out of your truck and I know you will never get back in it nor will you return my call like you stated in your voicemail you would... that's hurts in a way I can't even begin to explain. I took Tanner to your grave today, when asked who it was he said (my dad) but it hurts deep to know he doesn't really know you or remember you. I seen your truck lastnight, it caught my breath... I walked out in the parking lot so I could look at it, it seemed like such a faraway memory to see you setting in the drivers seat, I tried to imagine it. You had so many friends, people liked you. I liked you. I grieved today like it happened today.......I missed my little baby (Reagan) today too, I wish I could really remember what it was like to hold you....I wish I had a picture of you and Tanner together. I looked at your pictures today, you were such a tiny bundle, I had so many hopes and dreams for you....God must have had great plans for you too, I can't say I blame Him for wanting you in heaven, if you were anything like your twin brother Tanner (and I know you was) then heaven and earth both needed little boys like you. I'm proud to be your mom. I love you, I'll see you on the other side. 

All my love, 

Chera & Mom

 

Summer Time!!!!