Friday, March 23, 2012

Special Needs Spotlight: Dakota



 **I'd like to dedicate today's spotlight to a former spotlight participant and his family, Lincoln.  I was notified last week that precious Lincoln passed away suddenly.  I was saddened to learn this tragic news and I know his family misses that amazing boy dearly.  In my eyes, few people are braver than innocent children willing to come to this earth in imperfect bodies and trusting their lives to imperfect, albeit loving, parents.  Lincoln struck me as a very brave and noble soul.  I know of no surer strength and show of love in a time of grief than prayer.  Please keep Lincoln's family in your prayers.  You can read a tribute his mom wrote to him here.            

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Zach and I met in South Dakota while I was going to college there and he was serving his mission. (It wasn't like that :) ) When he get home a family in my home ward got us talking and it was all history from the very first phone call.  We got married January 2007 and had our sweet little boy Dakota August 2008.  We have had some drastic changes in our lives.  Zach had some fluke thing in August 2009 that left him legally blind.  Dakota had a fence fall on him November 2010 that left him with an anixic brain injury.  Needless to say, life has thrown us some major curve balls but we are doing the best we can...and leaving the rest up to the man upstairs.  Read more about our family here.  


Miggy:  Tessie, you have a different experience from any other child I've spotlighted so far in that your son Dakota's special needs came about because was injured in an accident. Can you take me back to the day Dakota was injured? What happened, and when did you know this was a life changing accident?

 Tessie:  It was the day after Thanksgiving 2010.  We were down in AZ visiting my family. That day we were setting up outside of my parents’ home for my brother's wedding reception.  My parents live on 5 acres but the main part of where most everything is, is about 2 acres. There were a lot of people there helping to set up.  Dakota had been outside playing with his 3 cousins.  At the time of the accident I was in the house cutting up vegetables.  My husband Zach (who became legally blind about 2 1/2 years ago) came inside to ask me to go check on Dakota because he hadn't seen him in awhile and it's hard for him to be able to see him amongst all the people and the amount of space to cover.  I went out expecting to find him playing around but as I kept looking back by the barn and hay I didn't see him.  I saw his then, 1-year-old cousin playing by himself and no Dakota, which I thought was weird.  My dad had gone around the hay into the pasture so I thought maybe he had followed him.  I went back there but my dad had said he was playing by his cousin last he saw and then I started to panic a little bit.  As I walked back around where his cousin was playing and smiling I noticed a little cowboy hat under a fence panel and then I spotted Dakota's little body lying underneath it.  I ran to him and picked him up but his body was lifeless.  His face was without color and I just screamed for help.  A friend of the family's ran to my aid and immediately began to give him CPR.  The ambulance came and continued but at that time we had seen no change.  Luckily there was a hospital just a mile or two away and it was there where I found out that his heart had started beating again and he was alive.  They then had to life-flight him to a specialty trauma hospital in Phoenix.  It was there in the waiting room when the doctor came and spoke to us that I realized that our life had just changed. I had no idea to what degree and still am trying to figure it out.

They explained that there were no physical or internal injuries but that somehow the fence had been in a spot that made him unable to breathe which resulted in him having an anoxic brain injury (which is just a fancy way of saying his brain was without oxygen for a period of time).  At that point they weren't sure if he would survive the brain swelling that would continue over the next 3 days and if he did, they weren't sure how much damage would be done to his brain.  Over the 6 weeks that we were in the hospital there in Phoenix and then in Salt Lake City (when he was stable enough) it was a continued just watch and see and no one knows exactly what will result.  We were told that the brain takes up to a year to heal from these things and that every child is different.  Because he was a child and not an adult he had a better chance of recovery but there is never a black and white picture of how it would be.  Although it has been almost a year and a half we continue to see little baby steps of progress but of course hope that we will see more.  We won't give up hope that Dakota will one day be able to walk, talk, eat, and play again so we continue to do therapy with him EVERY day to help give his body and brain the best possible chance of whatever recovery he can get.


Miggy:  Explain what Dakota's specific special needs are and how they affect your day-to-day life? 

 Tessie:  Dakota has a lot of needs that affect our life dramatically. He went from being a healthy independent 2 year old to being completely dependant on us for everything from moving, to eating, to bathing, to playing, etc. He had to have a trach put in because he had lost his ability to swallow properly and his saliva would get into his lungs and he was unable to cough it out. So the trach is needed to suction out his lungs. He has improved a lot in his ability to cough and swallow but he still needs suctioned several times a day. Because of the trach there are a lot of cares and precautions that have to be taken and we can no longer ask just anyone to babysit. Only people that are trained with trachs can watch him so it is really hard to be able to go places like we used to. Also, because of the trach he has to be on a humidifier at night and so just quick overnight trips or sleepovers are not easy like they used to be. He is also fed through a g-tube now. I personally blend up all of his food instead of giving him the formula so to go anywhere we have to be very prepared with meals blended ahead of time and packed in a cooler. No more stopping at a drive through or handing him a sandwich. There is SO much to bring everywhere we go and on top of it all he can't walk or get around by himself so we are either carrying him or pushing him in his stroller. Most every day is planned around him. There is a lot of therapy to get in every day so we have scheduled helpers that come help me with therapy every day because a lot of it I can't physically do with just 2 hands and Zach is busy working. So each day we have that scheduled in so it is hard to just go and do things on the fly like we used to.


Miggy:  What are the biggest worries you face for Dakota? 
   
Tessie:  The thing that worries me the most with Dakota is his happiness.  He understands SO much and I know he is mentally there but his body limits him from being able to move, play and communicate like he used to.  I am constantly trying to read his cues into what he wants and needs.  When he has really fussy days it is frustrating for both of us because I don't know why he is upset.  I don't know if something is hurting or if he is not feeling good.  I don't know if he is bored or frustrated because he can't do what he wants to do and I don't understand him, or if he is just being a 3 year old throwing a temper tantrum.  I want more then anything for him to be happy and I worry that I am not meeting all of his needs and wants.  He used to be able to do so much and tell me everything and all of that was taken from him so I worry how he feels about it all. I just wish I could get into his little mind and really know for myself how much he knows and understands and what he is thinking, feeling, and wanting.

Another worry I have is that when people who have never met him before meet him is that all they see is a disabled boy.  I want others to see the little boy that is inside of that body that is so limited.  I want them to see how fun, cute, polite and sweet he is.  I want them to know him for who he really is and not just a kid with a disability.  I love to talk about what he was like before the accident and what he likes and does now so that others can see past his physical limitations into his sweet heart!


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situation?

Tessie:  One of the funny things that we have encountered often happens when we carry him.  Often times we carry him in both arms like a baby.  People will see us and not really see his face and just assume we are carrying him like that because he is sleeping so we have gotten numerous comments like:  I wish I could sleep like that, you wiped him out, etc.  We usually don't have time to stop and explain the whole story of why we are carrying him so we usually just nod our heads and laugh and just keep on going. 

Miggy:  How can people best approach or respond to Dakota, but also your family in general as you come to grips with a drastic change of plans? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Tessie:  I think just treating Dakota and us as you would any other family and kid is how we like to best be approached.  Even though Dakota isn't the exact same kid he used to be and can't do everything all the other kids can do he is still a three-year-old boy.  He still likes to play and be around other kids.  I love it when kids approach him and talk to him and hold his hand and he does too.  I realize that because he can't walk and he has a trach coming out of his neck that it can be a little scary for some kids, so I would encourage parents to let their kids ask questions to them or us so that they can learn more and realize that it isn't scary.  I think people are afraid to ask us questions about the accident or Dakota in fear of how we will feel or what we will think, but we are happy to talk about it because we want others to understand Dakota so that they can feel more comfortable interacting with him.
 

Miggy:  What is the biggest lesson you’ve learned since Dakota's accident? 

Tessie:  It's hard to pinpoint just one thing because there are SO many.  But I think the one thing that sticks out most in my mind is to be grateful for ALL that we have, especially a healthy body.  I think so many times we let little stupid things that do not matter or have much significance bring us down or upset us. When you experience something as life changing as we have it easily puts things into perspective for you on what matters most.  I remember when Dakota was in the hospital I was so mad at myself for all the things that I let take priority in my life that didn't matter and all of the things that I would worry about.  I wanted to go back in time and savor every moment that I had with Dakota.  When I see moms in the grocery store and their kids throwing a fit, I wish I could even go back to those moments and have Dakota be able to throw a temper tantrum right there on the floor.  I would probably just smile now instead of get embarrassed or upset.  I thank God every day for my healthy body that I have to be able to take care of Dakota and I will never take that for granted.

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Tessie, thank you so much for telling us about your beautiful fighter Dakota.  I think sometimes as parents we think we're "safe" when we have that ultrasound that tells us all is well.  In reality we're never safe, life can drastically change at any time, without any warming.  I think Tessie and her family illustrate a unique perspective in the world of special needs and I think they are great examples of moving forward with love and positivity when life presented an unexpected plan.   Thanks again Tessie!

As always if you or anyone you know is interested in participating in the special needs spotlight please email me at thislittlemiggy at gmail dot com.  

Have a great weekend!


5 comments:

  1. What an adorable and amazing little boy. Thank you for sharing your story. Your perspective and outlook on life is inspiring. I actually just walked in the door from the subway where my almost two-year-old threw a huge tantrum in front of hundreds of people, and reading this filled me with gratitude and humility. I think I'll be a little bit better for having read your story, so thank you for teaching and inspiring me today.

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  2. My heart goes out to Lincon's family. Thank you for letting us know. They will be in my prayers.

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  3. What an amazing boy and parents! Thank you for sharing your story. I was raised on a ranch and married a cowboy so I love those pictures of him on his horse. I hope you know how incredible you are for doing his therapy everyday. I'm an SLP and know just how hard these kids and parents need to work to build skills. Your hard work will pay off!

    I'm so sorry to hear about Lincoln and his family. They will be in my prayers.

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  4. oh, I am just sitting here with tears streaming down my face. I don't know why, but this just really hit me and I could almost just feel her panic when she was trying to find her son. I have had that feeling before and it is tremendously scary. Dakota is a strong boy with strong parents and I wish them all the love and strength I can offer. I wished we were closer so my our boys could be friends. Thank you for sharing.

    all my love to lincoln's family too.

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  5. Anonymous2:04 PM

    It is so crazy how your whole life can change in an instant. It takes a very special and amazing person to deal with all of that and you have obviously done an amazing job with him. He is such a cute boy and I wish the best for your family.

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