Figuring Tuck Out + Figuring Myself Out

posted on: 1.13.2014


I don't know why I'm so nervous to type this, to "announce" this, but I am. I've been sitting here at my computer for over 2 hours diddling around doing everything except writing my thoughts down. I've been fairly open before, but to be completely honest, for the most part I've been holding most of it in.

 We have had this January appointment to possibly find more answers for Tuck scheduled for 5 months. It was last Wednesday. The anticipation for answers was so high and I felt anxious for weeks before. We did get some answers. Tuck has Autism, that was a definite answer. There is also very high suspicion of the Dr. that Tuck also has a genetic disorder. A Pseudo- Down's Syndrome, which could be a number of different things, and takes a very 5 month long wait blood test to figure out, which we're doing. A step in the right direction, but not a clear answer. We have always felt that it was something genetic, and not just a global delay, so to have the doctor confirm our hunch felt good. We also found out that Tuck, probably due to what ever this genetic disorder he has, is also "intellectually disabled", (commonly referred to as mentally handicap). That was real tough one to hear. A big lump appeared in my throat when I could tell where he was headed.

Truth be told, it was all tough to hear. Even though we suspected most of it, and knew deep down it was all likely, it was very emotional. We both realized in that appointment, and throughout this weekend, just how much our life will be changing. Immediately, and possibly long term. The rose colored glasses are off, and we are both processing this slowly.

Immediately the Autism is our priority. We have not had much of the digression that can be typical with kids with Autism, maybe because we caught it early. He has stopped clapping, and used to say mama and dada, which he no longer does. What has been the most challenging has been his behavior. Lack of any communication skills + very very short fuse if things don't go just his way + increase strength, without a correlating awareness of that strength.  I am a barrel of emotions when it comes to it, and my mood and approach to it changes almost by the minute. It's all still really confusing, overwhelming, gosh it's overwhelming, and scary. I feel both a healthy motivation to jump into treatment, and a sense of defeat and bitterness to everyone who's kids are born so healthy, who never have to go through the daily battles. That's really hard to admit, and I hope it's not received in the wrong way. I try to be a positive person, I try to focus on the good. I post a lot of the good, in hopes that my mind will focus on those moments, and in turn, good will come back to me. Lately though, I have been hardened, because it seems like we're being pummeled with bad news. It would be fake for me to say otherwise. It absolutely pains me to say that, as I feel like it's a completely different person than I was 2 years ago, 5 years ago especially. I guess life has just worn me out for the moment. I'm not giving up, and I do believe I can get back to that cheerful, positive person I was, I'm just not ready to pull the pom-poms out yet, and I think that's okay. Please let that be okay.

I've decided in 2014 to open up more. The hardest part of this entire process, besides the unknown, has been the isolation. The living away from family and friends physically, Wyatt's long work hours, and putting up barriers emotionally about how we are really doing. Since we've moved to Indiana we've felt incredibly lonely and isolated, like we're battling this huge beast all on our own and no one even knows. When you live by family and friends they're in your home, you're in there's, you can gauge a persons well being much easier, and it's much easier to open up. Over the phone, email, text, instagram you get about 1/100 of what is really happening. It's hard for me not to tell myself "they won't understand". I usually say that in my head, and just keep things to myself. I am also a pleaser by nature. I know people don't like complainers, I know people like me for my "cheerful, fun nature", and so that's the side I show, even when I don't feel that way. It's sort of a double edged sword, because I keep myself isolated. Sometimes talking to people who don't/can't understand, but are genuinely empathetic is helpful, and sometimes they say all the wrong things and it makes it worse. And sometimes it's just difficult me, and it doesn't matter who I'm talking to. Just please be gentle when talking to me, and I think I could safely say this about anyone who is dealing with something similar. Listen genuinely and without "mom judgement". Don't one-up, or relate and then shift focus. Don't say things like "well, at least", "that's pretty good", or "you still have so much to be grateful for". For me personally, statements like that, instead of boosting me up, like maybe they are intended, only seem naive or insensitive. 

I don't know that I'll be able to wrap this post up with a pretty little bow. Gosh I would like to. I will say that we all, of course, adore and love Tuck more than words can say. He brings tears, of frustration yes, but also of so much joy, to me all the time. Everywhere we go, he lights up the room, and makes everyone fall in love with him. I hope he never remembers these days of me not knowing what I'm doing, and that I can figure it out soon and be a better mom to him. And thank goodness he has the sweetest angel of a sister who does anything and everything for him, and a brother to whip him into shape and always be by his side.

Thank you to those who have called, and emailed. It has meant a lot and does always mean a lot. From family, friends, and blog readers. There are several emails that I haven't replied to (even ones from months ago) and I truly apologize. Please know they were read, and most deeply appreciated, and then re-read. They really lift me up, and what amazing women you are to take the time to write me something encouraging. 

xoxo
Chelsea

18 comments:

  1. Oh, Chelsea, this breaks my heart. You are an incredible mama. My husband has a middle-aged uncle with Downs who is the light of our life. The daily trials are unbelievable, just as you said. No one ever hears of those. His tempers, issues with hygiene, additional medical care, hospital stays, constant attention. It's all a part of it, just as I know you are figuring out with Tuck. You are not alone, not ever. We have been moving at a similar pace to your family and I am finding that kindred spirits are always at hand, and loving arms can be found for an embrace. Tuck is so lucky to have you and Wyatt. You are not alone and are so loved.

    ReplyDelete
  2. Chels, wow, I love you, my heart aches for how hard this is.

    ReplyDelete
  3. You don't know me. I am friends with Marianne Lesueur, and I can totally feel what you are going through. My daughter was born in April and we had no idea she would have so many health problems. The bad news just kept coming and I was a wreck for months. I started a blog because I had to write down everything going on and I was so tired of not explaining things to people and also of just saying, "things are good", because they aren't and when you say that everyone assumes life is back to normal, when they don't realize that we are now living in a new normal. Anyway, I am sorry for what you are going through. There is nothing worse than the unknown when it comes to your child and their health. Prayers for you and tuck. It does get easier to deal with what's going on. I have a blog if you want to read it when you are ready to get on the internet.

    Www.meetrubyv.blogspot.com

    ReplyDelete
  4. praying for you and the little man :/

    ReplyDelete
  5. hi chelsea, I'm sure you're probably surprised to see a comment from me but I love your blog and just had to tell you what an amazing woman you are as I'm sitting here with tears down my cheeks. I know the feeling of living away from every family you have and the loneliness that can bring and that no matter what you're going through you have to do it all alone and just handle it, but you don't want to let others know how you truly feel because of exactly what you said - you don't want to complain to people. I hope you know that you are incredible for all of the things you juggle and handle with such grace. You have shared such an open and vulnerable part of yourself that I know others look up and want to be more like you. Just hope you know that you are doing enough and its ok to let yourself feel whatever you need to:)
    sending love your way,
    Chelsey

    ReplyDelete
  6. i can understand the feeling of having the rug pulled out from underneath u over a child. it's painful and scary. i remember thinking that if one more person tells me that "god has a plan" i might punch them in the face! NO judgements on how you are processing this. the shock will eventually fade and your reality will become your new normal. but today, you are allowed to deal however you need to to survive. i like to think that when god looks down on my family he sees a bright light. the light is a character light that is from our story, the story that nobody else has, the story that has bonded my family in a very unreal way. not everybody is able to carry this light... will be praying for your heart and your families future. thank you for sharing with us strangers. xo keli

    ReplyDelete
  7. This comment has been removed by the author.

    ReplyDelete
  8. Chelsea, I am so sorry you have had to go through this! Please know I am thinking and praying for you and your family. Before I got married, I worked with children with autism and 2 of my nephews are autistic! There is such a special place in my heart for these children! You are doing everything right! The most important thing you can do is love him, and everyone can see that you do! No matter what program you do, as long as it is with love, he will do great! Good luck and if you have any questions, please feel free to message me! Savanna Tate

    ReplyDelete
  9. I loved your sincere and raw openness for this post. I've followed you since you were selling Tatertots. :) We actually have a few mutual acquaintances/friends. I ache with you for the pain that a parent feels whenever we want "the best" for our children...and yet it seems to be going any direction other than the one you expected. Just "stalking" you over the years, even though I don't personally know you...it would seem to me that Tuck has the most supportive and loving family in his corner and battling with him. He is a beautiful little boy and I pray for peace, understanding and lots of patience for your dear family. Much love!

    ReplyDelete
  10. A good friend has a little boy named Jaysen with some physical and mental challenges and they are still searching for a diagnosis. I am certain you two would connect and could be support to each other. Her blog is:


    http://littlejsjourney.blogspot.com/

    ReplyDelete
  11. You are such an inspiring writer Chelsea... no matter if its ups or downs. Seriously, this post is so heart felt. Thank you for sharing. Thinking of you and your cute family!

    ReplyDelete
  12. I have thought of you so often today, after reading your post yesterday. Your words touch my heart deeply. I understand what you are feeling. It is a very hard, trying time for you. I wish you the very best. You will get through this. It will be better again. I pray that you will have some wonderful teachers and therapists come into your life. They will make all the difference for you and your beautiful family. Stay strong.

    ReplyDelete
  13. Tears. I totally understand the ache in your heart. Our son is in the same boat. One of his therapists came and was giving me some more information on things we should start working on. I think she could tell that I was in special ed overload and couldn't handle another suggestion because I felt like I was already failing at all previously given suggestions. She said, you know in my training I was told that to be a parent of a special ed child is the same stress level as a soldier in combat. I laughed, she said no I am totally serious! I think about that sometimes when I am having a down day and it makes me realize that I am doing something pretty amazing and it is okay to allow myself the grief that comes with it all sometimes. Allow yourself the same. You are awesome! Good luck and hang in there:)

    ReplyDelete
  14. Thank you all so very much for your kind, genuine and heartfelt words. While I don't have the time right now to reply to each of you, I hope to soon. I am so touched by the love I feel from each of you, and please know you have helped buoy me up. Love, Chelsea

    ReplyDelete
  15. I haven't met you, but we were in Dominica after you and some of our tupperware said Horsley on it :) My heart hurts for the pain and worry you are going through. And I felt so uplifted by your attitude and love for your little boy. He's lucky to have such attentive, loving parents. Thank you for sharing, prayers and love coming your way.

    ReplyDelete
  16. Completely beautiful & down right real!! I love real... Your incredible in so many ways & that's only the stuff I see on social media so I know your amazing in all aspects of your life. Thank you for sharing about sweet Tuck whenever you post about him he draws you in he's so adorable! I'm so sorry for the answers you got my heart hurts knowing the daily challenges and the days are so long with little ones no husband around or family close by then adding in a little one that needs extra TLC! Ohhh nuts I'll be praying & thinking of you daily! My heart goes out to you. You seem so strong keep up that strength your an inspiration to so many. From a follower xoxoxo

    ReplyDelete
  17. I'm only just now reading this. I just want you to know I love you. If only you had come to Bakersfield then we could have become best friends and made Wyatt apply to Eisenhower so we could be here together! I would be here for you in any way I could. I think you are amazing and that you will all come through this together and be even better than you already are. Not sure if that's what you want to hear, but I am writing from my heart. I think your sharing with us what you're going through must be helpful to you and others including me appreciate reading your experience so much. You and your family are always in my thoughts. I send you light and love.

    ReplyDelete
  18. I love you Chels. This made me tear up at work. This was an amazing and real post. We're always thinking about you guys. You're such a good example and amazing person (maybe that's why I changed my name to Chelsea trying to be more like you! hahah) LOVE YOU! xoxo, Britt

    ReplyDelete

thanks for stopping by, please be kind.

Related Posts with Thumbnails

YOURS TRULY All rights reserved © Blog Milk Powered by Blogger