The Tan Man

The Tan Man

Welcome to Thankful 4 Tanner

Hello all! And thank you for visiting our blog about our family and precious baby Tanner. Here you will always find up to date information about Tanner. I know sometimes it's hard to get ahold of us when you are wondering how Tanner is doing. So here we will post information we recieve at his doctor's appointments. We will always post Tanner's biweekly weight checks and overall growth. We'll post all of his accomplishments that seem to be coming daily. He's always trying something new. Thanks again for visiting and caring about our precious gift from God.

Monday, April 19, 2010

Things I need to say

I've realized by reading other blogs that I should not be ashamed to share my inner most thought and fears. How we feel is who we are.
There are so many things I've been ashamed of throughout my life. Sometimes I feel like I pretend to be better than I am. I try to forget about my past.....although it's impossible. Which leads to me to this moment. Sitting my Tanner in front of Play With Me Sesame in his swing...hoping to get my thoughts into words. I would say when I turned about 17 years old I became a very confused young lady. Things really spun out of control when I graduated high school. I had zero relationship with any of my family and all of my good friends. I shut them all out. I was in a terrible place. A horrible relationship, no good friends, terrible habits,and I made horrible decisions. I can't begin to describe the guilt I felt when Tanner was born and I looked at his little face.....when I knew something was terribly wrong. That whole week when we were awaiting his diagnosis I couldn't shake the feeling that I was somehow being punished for all of my horrible mistakes. Now Justin, Tyler, Carter, and my sweet little baby were also going to pay the price for my idiocy.
A lot has changed since Tanner's diagnosis. I obviously do not feel like I'm being punished anymore. It's just a horrible feeling that I have not spoen of until now. Something I was ashamed to share with anyone......that I would think that God would want to punish me. People grow....mature.....change. I certainly have done a lot of changing and I try to look at my past as making me who I am today but honestly.....I wish I could erase it. I'd rather not feel like I'm not as good as I pretend to be.
Another horrible feeling that I've battled inside of my head is all about Tanner's diagnosis, how we got to it and what I would hav done if I knew what he had before he was born.
Most of you know either the whole story of my failed pregnancy at the age of 20 or have at least got a little piece of it here and there. It seemed like a normal pregnancy until my 6 month ultrasound when the technician turned the screen away from my grandmother and I. I'll never forget my grandmother's face that day. At that moment her and I both knew something was wrong. The tech told me I would have to wait to talk to my doctor. Days went by until I heard from him. He brought me in and told me my sons limbs were measuring short and that I needed to go to Johnstown for a more detailed sonogram. Another few days passed until we went. There they told me that my baby was a dwarf. Not only were his arms and legs extremely short but all of his major organs were underdeveloped. They couldn't tell me how it was all going to play out......other than he was not going to make it. They said I could go into labor tomorrow or carry full term and have him die right before delivery or moments after. I was so young.....so sad, and so totally scared. How was I going to carry a baby in my body only to never be able to have a future with him??? I just couldn't wrap my head around this. I actually never got a chance to because that night my water broke. I was taken to Johnstown where Gabriel died 4 hours before delivery. I'll never forget that feeling of totally emptiness. I don't talk about Gabriel much. He would have turned 9 years old on April 7th. It was eventually determined that Gabriel had a very rare chromosome mutation that caused Dwarfism. This brings me back to that week awaiting Tanner's diagnosis. I thought for sure Gabriel's chromosomal defect was what happened to Tanner as well. I thought this was something I carried within my genes. Although at this same time I was angry with God for putting my family and I through this, I was so thankful for Carter being spared this mutation that I thought I carried. I was floored when I learned the two were unrelated in any way. Really???? Two things totally unrelated, so totally RARE could happen to ME! I just couldn't believe it. This is when I questioned my doctors. Who wasn't doing their job???!! Why wasn't I tested?? I should have been tested!!! The doctor's told me at Johnstown that I should have genetic counseling and testing in future pregnancies. Years after my pregnancy with Gabriel when I found out I was pregnant with Carter I immediatly made the doctors aware of my previous pregnancy. They did what they should have. Counciling and amnio. Everything was fine. I was so relieved. Carter was a huge 9 pound 12 ounce baby. Healthy as a horse. My fears of pregnancy had been set free. When I found out I was pregnant with Tanner I went to the same doctor's but still re-informed them of my pregnancy with Gabriel. This time there was no concern....no counciling, no testing. They said that Carter was fine and everything was going to be ok this time too. I was as sick as a dog the whole entire time with Tanner. I didn't throw up much but always felt like I was going to. I barely ate anything. I was so angry at them after Tanner's diagnosis. I remained angry at them for a few months. That is, until I really got to know my baby. His amazing little personality makes me smile countless times a day. His big beautiful blue eyes, long lashes, and canyon sized dimples make me fall in love with him more and more each day. I can't help to be thankful that these people did not do their job. What would have happened if they told me my baby was going to be born with Wolf-Hirschhorn Syndrome? I would have come home and jumped on the computer and googled it. I would have seen and read everything that I read when Tanner was first diagnosed. I would have seen that horrible image of a young girl crouched in a corner that looked like she was no where near coherent....read that my baby would probably never walk or talk....would have no personality.....he would be dependent on me for everything...he would have little or no value of life. Geeez! What would I have done? What would the have told me to do? I can't say what I would have done. It does scare me that I could have made a horrible decision and never gotten the chance to know my baby. I could have never gotten to see my amazing little baby boy smile at me, reach for me, giggle, watch his brothers play, roll around on the floor, or grab his feet and try so hard to get them into his mouth. I could go on and on about the million things that Tanner does that make me smile. These are all precious things that I could have missed because medical journals are not updated and medical staff are not educated. This is a whole different issue that needs to be addressed. Our friends Saturday were talking about a couple that are in this exact position now. She is 6 weeks away from delivery and being told to abort. I can't even think about it without tearing up. I wish this coulpe knew us.....me and Justin.....Hannah and Lauren...all of our WHS friends. There was so much love in that one room on Saturday. I wish they could see how happy we all are with our less than perfect children. I hope they keep their baby.
Well, these are the things I needed to say today. If you have made it through this all over the place rambling .....thank you for listening to my thoughts.

9 comments:

Kristy said...

I love your honesty. Sometimes it feels really good to get it all off your chest - well it does to me anyway. I understand your frustration with the doctors after Tanner was born. I look back on my pregnancy with Dylan and see so many red flags it's crazy. They saw things wrong with his heart, growth, facial profile, but then I would have another ultrasound and they would say that everything looked fine now. I guess at the time I just never thought that it was possible for anything to be wrong with my baby. My poor doctor, he was in tears when I called to tell him what was wrong. He just kept saying how sorry he was. Here I am a labor & delivery nurse who has been delivering babies for 10 years and has only seen a handful of bad outcomes and then it happens to me. I had never heard of WHS and was completely shocked by the diagnosis. I often wonder what I would have done if I knew in advance. Honestly, I don't know. Dylan is such a joy to my life. He is just the sweetest, most loving little guy I could have ever asked for. I know exactly how you feel when you look at Tanner. It's funny too because Dylan was born right around the same time as Tanner and Riley. Gosh, we were all going through the same things at the same time - small world. If only we had known eachother, I wouldn't have felt so alone.

I love all the pictures from the gathering. I am glad you all had such a wonderful time.

nona said...

Thank You For Giving Us Our baby Tanner. Love,POP_POP And Nona

Lauren said...

So, if you didn't already know (which I find hard to believe)... I love you.

Like the the great big, BFF forever kind of love you.

:) Good post my friend.

Hannah said...

I love your honesty. You are such a strong woman and an amazing mom. I feel privileged to know you.

jennifer said...

Jess,
You should never feel like you're not "as good" as you pretend to be. You are what others should strive to be to their kids. The past is the past and it has made you into the most wonderful woman, mother, wife-to-be, sister and best friend anyone could ask for!! You do something that most could not deal with. You are fantastic and sometimes i think you're the only one who doesn't know it!! I love you!

Randi said...

Jess ur such a strong person u take all everything that other people would be depressed about and look at all the good that has come out of it u r a beautiful person it takes a lot to do what u have to Do every day and u always have a smile on your face.... ur a inspiration to so many people!

Kisses4Kaylee said...

Jess, we talked about this when we first met, and I admitted openly to the group the other day that had I known Kaylee's diagnosis, I would have aborted her. Given all that I knew from online research and given the past 11 years raising a mentally-challenged child, it would not have taken my husband or I long to come to that conclusion. That honestly scares me, now. It took me awhile to love Kaylee and accept her diagnosis, I cannot lie. I cried for the first month and fluctuated between acceptance and denial the second. But now-- I cannot picture my life without her. This support network is responsible for that (and ironically, I just posted my blog entry about that just before reading yours). I am thankful that God didn't reveal her challenges to me in utero because she is far from the child I expected her to be at this point. That said, I do still hold intense anger towards my doctors. That may seem contradictory and hypocritical to say, but I think it is the ineptitude that they failed to seek out the answers for her IUGR-- much like yours failed to do thorough testing-- that bothers me the most. They had a responsibility to provide complete care, and they "dropped the ball" on mine-- and yours. And as much as I do love Kaylee now, her future remains unknown and her needs have yet to surface. Love alone will not save a child from needing medical care, surgery, medication. Love alone will not keep us as parents from spending countless hours worrying about our children's health, their safety, and their future. I understand feeling as though God hated you-- I believed the same thing. But after spending time getting to know you, Lauren, Hannah, and the many others who have demonstrated such incredible faith and that indescribable bond and connection with your children, I see things differently. You are an inspiration to me, and when I feel down or sad about Kaylee, I think about you and your love for Tanner, and it brings me back to my happy place with her where I focus on who she is and not what she has. Thank you for being my friend in this journey. I love you!

Kim said...

Beautiful Jess! I didn't know you then, but I'm proud to know the strong, amazing woman and mother you've become and we are all lucky to have you in our lives- especially Tanner! Love you

JKilpatty said...

Love the post, Jess! Your honesty and strength are admirable, but it's your overall positive energy, in every single one of your posts, that is inspiring. I love reading your blog and "sneaking" peeks into the lives of you and your beautiful family.