Saturday, June 4, 2011


I miss normal is the best way to describe why the tears are just flowing these last few days and my heart is aching. I asked a friend a few weeks ago how her and her family were doing and although I can't remember her exact words she basically said things are just normal and good. She expressed how she was grateful for normal...we aren't rich, we aren't poor, we are healthy and just happy to be where they were at.

I miss normal SO much. I miss hearing Dakota's little voice waking me up in the morning instead of the sound of a trach...I miss him telling me why he is sad instead of hearing him scream and cry and trying to guess out of the million things that could be wrong what it is...I miss playing with him, letting him take the lead and just enjoying being there with him instead of me doing all the play...I miss a normal day of just cleaning the house and doing laundry instead of therapy, therapy, therapy,...I miss just up and leaving last minute to go take something to Zach or run to the store instead of being bound down at home...I miss taking Dakota to the store with me and chasing him around and hearing his little giggles (I used to love it when Zach would be home and I could run to the store by myself. Now I HATE it! I hate having to wait for someone to be home so that I can go and I miss seeing his little body in my cart. It is so lonely now!)...I miss letting him decide what he wants for breakfast and sitting down at the table to eat with him...I miss cleaning up the messes afterwards instead of cleaning out a stupid blender and feeding bag...I miss our old bath times where he would LOVE to play in there forever and ask for bubbles (now it seems like such a chore)...I miss being able to go out and pull weeds or work in the garden while Dakota could run and play (he LOVED being outside)...I miss him asking to play with Tanner (our neighbor) and watching them just laugh and play together...I miss planning our summer trip to AZ to swim and play with cousins or to go camping(now the idea of it sounds impossible)...I miss going anywhere in the car without having to load up 10 million bags filled with medical and emergency crap...I miss having Zach being able to drive and take me out on a date...I miss Zach being able to go out and truly enjoy the things he loves to do like hunting and fishing...I miss playing on my slowpitch softball teams and doing what  I love to do...I miss our smiles and free spirits that seem to be taken over with the stress of our lives...I miss being able to ask anyone to babysit instead of having to bug the same three people every time we need to go somewhere...I miss seeing Dakota suck on his blanky...I miss his hugs and kisses A LOT, I give him plenty but they are just not the same...I miss going to Sunday dinners at the Friedlis and how excited Dakota was to be there, he hated when it was time to leave...I really miss his voice and ALL of the funny things he would say...I miss looking forward to his next milestones (I wonder every day what he would have been learning or doing now), instead we are back to square one trying to learn to hold our head up again (This is one of the hardest things for me. All you parents know how excited you are for your first child and how fast you want to see them sit up, take that first step, smile, talk, etc. You are experiencing EVERYTHING about parenthood for the first time. You look forward to every new thing and I feel like all of that was just taken from me. Everything he had learned and everything he was going to learn. Not sure if any of this makes sense, but it does in my head) I JUST MISS NORMAL!

This poem a trip to Holland describes perfectly the feelings of having a child with a disability:


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This describes it so perfectly. The problem is I got to go to Italy for two whole years and I know how truly wonderful it is there. But then in one split second I was kicked out to Holland. And yes, there are some wonderful things about Holland but I can't forget the memories of Italy. They are a deep part of me and consume my mind every day. And the part that scares me the most is that I don't know if I'll ever get to go back to Italy with Dakota or with any child in this life. And that is hard to take in. I will never let go of my hopes and dreams to go back but for now I am here in Holland and I am trying my best to see the beauties that are here every day. Some days it is hard though.

Sorry to dissapoint all of you who think that we are so amazing through this with this post. But the truth is...we still cry almost every day even though it's been 6 months. The truth is I can't wait for the second coming when Christ will come and we can return home and all this super HARD life will be done and Zach and Dakota will be perfect again. When the crazy preacher guy or whoever he was was advertising the end of the world was coming last month...I'm not gonna lie...I didn't believe him but if it really happened I wouldn't have been dissapointed. In fact in my own secret way I was hoping he would be right. Someone gave me a card that said...The grass looks greener on the other side but it is still hard to mow. I know that is true but matter how often we mow it doesn't seem to get any easier over here.


  1. Bless your heart woman! My heart aches with you and for you but I am also inspired by your strength and endurance to go through somthing like this. Although we have never met, I think of you and your little family often and ask the Lord to give you an extra dose of strength each day. I know this, COWBOYS have STRONG spirits and Dakota is among the elite! Look forward to meeting you sweet lady! Hugs!

  2. Dear sweet Tess I think you are so wise and so entitled to feel like you feel! I know you and Zach are among the elite. I wish everyday and pray all will be well for you! Sometimes I feel like I am in Holland only I signed up for Hawaii. :) I have my times when I miss my kids running around and needing me and spending every Birthday with them. But then I would have to give up my sweet daughters and son in loves and our grandchildren! It's not the same I know just a little thought. I am sure those few you entrust to watch over Dakota feel like it's an honor and a privelidge to be with him. God knows you and he is there. And we will keep praying for you. Love you

  3. oh Tessie.... I am so sorry and my heart breaks for you! There are no words. I wish there was a way for some of us to help carry your burdens :( I loved the poem you shared. Hang in there!!! xo

  4. In my opinion this post still lets us all know that you ARE amazing, and still human at the same time. You are examples to us and we look up to you guys so much. You're in our thoughts and prayers.

  5. I am so sorry. Adding extra prayers for you today and trying my best not to take "normal" for granted. Your honesty is exquisite, healthy and awe inspiring. (p.s. good thing you added that "end of the world" comment to get me to stop crying at the end of your post. :)

  6. I know I can only speak for myself, but I found this posting of yours to be most refreshing. It reminded me that you are human. You had this increadibly difficult detour thrown into your life and yet you have chosen to navigate it with such unselfish grace. I cannot image the weight of the cross that you have been asked to bear. You have been a pillar of strength to your family and those of us that read your blog. It is ok to show your vulnerable side, to vent. I believe it is the only way to truly heal. I am happy you are able to find comfort in others' words and in God's, but I hope you can find even more comfort in knowing that your actions, though not seen by many of us, are felt in our minds and hearts. Images of your sweet Dakota pop up in my head throughout the day. He helps me cherish each moment and count my blessings every night. You have helped me become a better mother and wife to my husband. I often share your blogs with friends/coworkers and I know they hug their children a little tighter because of it. Thank you for sharing your personal experiences. We will continue to pray for your family every day. "Blessed are those who mourn, for they shall be comforted."

  7. I'm sorry. I wish there was something I could do to help. Life might not be normal for you, but you are normal. You have every right to have these feelings, the feelings of a normal human being. You have been cast in a super woman role and that can be very overwhelming. The Lord says He won't test us beyond our ability to cope, but sometimes I think He gets awfully close. My prayers continue to be with you and your little family.

  8. Tessie! You are such an amazing woman! I wish I had more to say but all of these other women have said what I would have liked to say to you, but they have said it better than I! I feel so blessed to know you and call you my friend! You are so amazing and are such an inspiration to me!
    Love ya lots!

  9. Praying for you everyday! You and Zach are doing wonderful and you are amazing examples to us all!

  10. you're not disappointing anyone. we all still think you're amazing. love and prayers your way.

  11. Tessi and Zach,
    I have read this posting over and over and over. These last few months have been so difficult for you, don't judge yourselves on how you are handling it. You cannot think that you are letting anyone down, you are inspiring people daily to be better in their own situations! It is so easy to sit on the sideline and say, gosh, that is a sad posting-the truth of the matter is that Yes, it is a sad posting and it should be! There are so few things in life that truly adjust your entire outlook, your entire expectations for what you saw for your own future, and you are in the depths of it. Remember that everyone loves you and is here to do whatever it is they can do...don't be afraid to ask for help, we are here and don't know how to help you, but will do it in a heartbeat. We all love you and are here for whatever you may need. God and all of us love you dearly!

  12. Tesse,
    I am Jordan Sessions' sister from wyoming and I want to echoe what Shawnee said. This post shows your strength! You make me want to be better in all aspects of my life. It is impossible for any of us to say we know what you go through on a day to day or minute to minute basis... but there are some many people (including a mom from wyoming that you have never met) who know that the Lord knows YOU and what you are experiencing (moment by moment)
    Mosiah 24:14 And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs...and this will I do that ye may stand as witnesses for me herafter, and that you may know of a surety that I, the Lord God, do vist my people in their afflictions

  13. Tessie,
    You still seem to amaze me. reading this post made me cry and really look at my life and how blessed i am. i don't think i could ever deal with all you have gone through with zach and dakota. Heavenly father knew you would be okay and that's why he gave you these trials. You are really so strong and this post really shows it. Your such a great mom and wife Hang in there tessie. I am always praying for your sweet little family!

  14. I think of you many times throughout my day. We pray for your family EVERYDAY. I truly appreciate your honesty in your feelings. That means your real, and some days are just HARD. I think you are a very special, and BEAUTIFUL family. I love the spirit that you carry with's calm, sincere, honest, and full of love. I have felt that from you since the first time I met you. I met you when I was very pregnant with Sadie. It was a very hard time for me. You always came over and said something very sincere, and it lifted my spirits. I appreciate those comments still to this day, because I know you really meant them. That is why I love you so much, and strive to be like you.

  15. I ran across your blog today on the internet. Please know that Dakota, you, & your husband have touched my heart...a stranger hundreds of miles away. You helped me today to stop and realize what is important in life. Your faith in God is an inspiration and I pray that your faith keeps you strong.

  16. I just found your blog- I want you to know that my heart hurts for all you and your family have been through. You are so strong, and Dakota is lucky to have a mom like you. I can't imagine what it must be like to be stuck in "Holland" and watching everyone else go to "Italy." Take care of yourself.

  17. That poem describes it in the simplest terms, perfectly. Tessie, thank you for reminding me to cherish normal, the mundane everyday.
    You are such a beautiful person, and although I cannot say that I know how you are feeling...There is one person who does understand, completely. I pray that He will continue to strengthen you, Zack and Dakota. Your family will be perfect again one day Tess. We love ya.

  18. I know that sometimes you feel weak. I know that sometimes you wish for something different. But God only gives us trials we can handle. You are meant for so much more than "normal." Normal is for people who can't deal with such hard things. I wish there was something I could do for your family. Just remember, Christ has lived through the pain you are dealing with now. Only he truly understands your pain....

  19. Thank you for your honesty. The Holland story has been one of my favorites for years. My last few years has been very rough as well, as I was diagnosed with a brainstem brain tumor that nearly took my life. There are so many ups and downs on the road, but know that there are also many who will continue to pray for you. People have often told us that we are "amazing", but like you, we just feel pretty normal, trying our best to handle the hard days of life. God bless you and your sweet family. Jodi -- Inspiration and Hope for Navigating the Detours of Life