Happy Father's Day

(I know this is a little late :) )

Happy Father's Day to my sweetheart and to our two most AMAZING dads in the whole world! All three of you have brought me so much joy and I don't know where I would be without you! I sure love you and I'm so glad we get this day to celebrate YOU!

For Father's Day I was trying to think of something that would be fun for Zach. Since he went blind it is kind of hard these days. All of the things that he loves just aren't the same anymore. He can't go hunting (at least none of you would want him out there with you :) ), watching movies aren't the same, even going out on a drive in the mountains is just not the same. Close your eyes and try and do all the things that you enjoy and you will see what I mean. So, basically he still LOVES to get massages and to go out to eat. Well, Friday night was our date night (when Doug and Vicki were available) so Zach had already planned with one of his landscape clients to eat dinner with them. They had invited us over for dinner (sweetest people) so I couldn't take him out to dinner and it would be too late to take him for a massage afterwards so I had to get creative. Zach has always loved camping (although even that is still not quite the same) so I thought what if we just sleep over in Mantua for the night...a little getaway from the same routine we do every day. So we did it! We didn't even get up there until 11 by the time we ate, got all our stuff and drove up there. Since it was just a short night we just had a blow up mattress in the back of my car. It was a little tight but it was so fun. I had brought a lap top and movie and treats for something to do but as we laid there we both said, "wow, this is so nice and quiet. No oxygen concentrator, air compressor, monitor beeping, video monitor fuzz in the background. So instead of watching the movie we just laid there until we fell asleep. I know that sounds pretty lame and boring to most of you but it was really nice for us. Sleeping in and cuddling was the best part. We didn't even think of getting up until like 10:30. I talked Zach into running around Mantua lake with me (not the funnest father's day activity I know) but it is so pretty around there I didn't wanna pass up the opportunity. He was a great sport and did it with me.

Although it was a great getaway for us for the night, there is still not a time where the pain of life doesn't seem to creep in. As we laid there in the morning and heard all the 4 wheelers driving by I just thought how much fun that would be to be able to do that as a family. Zach loves that kind of stuff. As we laid there I thought of the night last summer when we slept over in Mantua in the back of Zach's truck because our AC went out in the house and it was way too hot. It was so fun having Dakota there with us waking us up in the morning. I thought how much fun he would have had camping out in the car with us. As we ran around the lake and saw all the little families and little boys out fishing with their dads and grandpas my heart just ached because I know how much Zach LOVES that kind of stuff and was so looking forward to doing that with Dakota. I so wanted to just trade places with these strangers I didn't even know. I wanted them to see how lucky they were. I felt regret that we didn't DO more of these things as a family before Dakota's accident but Dakota was just getting to that fun age where we could have and Zach was just finishing up school and we would have had a lot more time. I pray that one day we will be able to be that family and be able to do things together again. I often wonder what lies ahead for us. I know I shouldn't waste today worrying about tomorrow but it is hard not to. The other day I heard President Manson's quote, "Do not fear. Be of good cheer. Your future is as bright as your faith." (It may not be exact but that's the gist of it.) I try to remember that and focus on my faith so that we may have a brighter future.

We still had a good time together and it was fun to see Zach excited about something again.

I haven't updated on Dakota lately so I think I am due...:)

He is doing awesome with his capping trials. He is capped for pretty much most of the day. He still will have moments where he struggles and forgets to open the airway, most often when he is upset and crying. He is managing his secretions a ton better (a lot less drool and drainage out the nose) and we often see or hear him swallowing. Where it is going is still unsure (stomach or lungs) but I think he is doing well. We are gonna really try and push the capping trials and mouth stimulation to hopefully have a chance of getting the trach out by September. If he doesn't get it out then then we have to go another full winter before they would even think about taking it out. So...we are pushing him as best we can. We meet with a Ear, Nose, and Throat Doctor the end of July and they will be the ones who give the final go ahead so keep it in your prayers that he will keep getting better and stronger. He has to obviously be able to be capped ALL day and not need any suctioning and cough everything out on his own.

We went through a really cranky time with him a few weeks ago. It was non-stop crying, no smiles or laughs, and just plain grumpy. We couldn't figure out if it was the meds we had taken him off of, his diet, capping trials, or just him. After talking with his doctor she explained that every tiny change we make will affect him greatly so making all of these changes at once is probably playing a big part. So we put him back on one of his meds that help with his agitation while we are trying to do so much with the capping and diet. It's REALLY hard on us when he is so upset all of the time because we are already trying to cope with this huge change in our lives that has left a huge hole in our heart and then on top of it to have him cranky all the time with no smiles just really makes getting through the day even harder. His cute smiles and laughs are pretty much the only thing that keep us going. So, I'm so glad things are getting a little better in that area. It was a really rough few weeks for us.

We had our three month review with NACD and that was really good for me. After three months of doing the non-stop therapy that they had given us it gets hard. Of course I would do ANYTHING in the whole world to help Dakota which is why we do this but when I do this all day every day of course I wanna see some big results. We have definitely seen improvements but of course I feel like there should be more for how often we are doing it. It was good to hear Bob (the director) say he is right where I would expect him to be. My reaction, "really?! cuz I feel like he should be creeping by himself already for how much we are doing this. he said, "If he were creeping on his own already I would fall out of my chair." He said he is on the right track and the huge reduction in his spasticity is the first step. He said his eyes were doing much better and he was impressed with his cognition. So here we go with another three month therapy program and we will keep at it the best we can.

The best part about being at NACD that day was a sweet little mom that walked in with her family after me and came over and talked to me. She was so sincere and so sweet. Her daughter had suffered a brain injury at birth from lack of oxygen and they started with NACD when she was 17 months. She told me the doctors said she would never walk or talk but just like any mom you can't just give up and say ok. She said Dakota reminded her of her daughter when she would have to carry her around. Her daughter is now 13 and walked into that building on her own. She still can't verbalize words but she is able to communicate with some sign and understands everything. She was able to crawl not too long after being in the program and walked at age seven. These parents were so loving and dedicated and because of that, this little girl has come so far. I talked to Bob more about there situation compared to Dakota. He explained that because Dakota's injury happened later in life it is better then at birth because his brain already had so many connections compared to at birth they have none. This gave me so much more hope that this precious girl who had no connections has been able to come so far, I know Dakota who was such a little smarty pants can do it too. I know it will continue to take a lot of work on my part but it is so worth it. Just the very thought of seeing him walk and move his body how he wants and to hear his sweet voice again is worth any price!

Bob also helped me understand the big fear that has been hanging over me the last little while. When Dakota's accident happened all the doctors and neurologists had told us it takes up to a year to a year and a half for their brains to heal and to see where they will be. Well, as it has now been seven months and getting closer to that year mark, of course I'm getting a little nervous. He is not crawling or walking or talking or anywhere near these goals. Bob explained what that year mark really means. That is the time where the spontaneous recovery of the brain occurs. Where recovery from what you had will happen pretty much regardless of what you do. After that year mark does not mean that no more progression takes place. After that it is just like any other person, the brain can still learn and make more connections and can continue to progress. He pretty much said that the year mark really will make no difference on Dakota's progression. This has helped a ton and that fear of the year is now gone.

We finish our 80th treatment with the hyperbaric chamber on Monday. I can't believe it has already been 80! It is hard to know where to go from here. Of course we have continued to see progression with Dakota but it is still hard to know if the chamber is playing any role in this. I would like to hope for all the time and money we have spent there that it is but it is hard to really know. They told us when we started the last 40 that there really is no protocol with brain injuries. Pretty much when you stop seeing progression is when you stop the treatments. Well, of course I hope we never stop seeing the progression so do we keep going for the rest of his life?? :) We will hopefully have a more in depth talk with the doctor there to help us decide what to do next...whether to take a 3 week break and start again or just be done. We obviously don't have unlimited funds to keep it up forever but if it is helping enough we of course do not want to stop. Decisions, decisions!

We just lost our in home therapy because our insurance said there is no more risk for Dakota to go to outpatient therapy now the respiratory illnesses are pretty much gone so now we have to start with outpatient which will be up in Logan. So pretty much Logan is our main destination these days. I will miss the convenience and help of having them come to our home and the wonderful therapists that we have grown to love. It will be a hard adjustment for us but what can you do. Insurance knows best, right?! ;)

Well, as always a HUGE thanks to all of you who continue to keep Dakota and our family in your thoughts and prayers! Thanks for listening to me vent and complain and for your inspiring comments that keep us going. It is by far the hardest road we have ever been on with no road map to show us what or where to go. We need all the help we can get...so thank you!

Here are a few pics.

I'm not very good at getting therapy pics anymore but here is one of Dakota in a theratog suit that helps give him more support.

Sitting up like a big boy watching his show. His head is getting a lot stronger. It doesn't fall forward hardly at all. He still tries to bring it back to far though so we need to find that perfect middle.

Just some fun family pics from Sunday dinner at Aunt Jenny's house

Going down the slide with cousin Houston

Trying to get Honeybun. He LOVED the dogs.

Just swinging with Aunt Jenny

Just being cute in Poppy's arms. What he does best! :)

Swinging

Snuggling with Uncle Beau

Snuggling with Grammy

Chillin with Uncle Ry, Chloe (sorry if I spelled that wrong), and Grammy

My parents were able to come for a quick trip a couple of weekends ago for a family reunion. Always fun to have them here! I didn't get many pics though. ;(

Snuggling with Nana watching a movie on the lap top. Dakota's favorite thing to do! He LOVES movies! His favorites are still Toy Story and the very old primary videos Zach's grandma gave us of kids singing primary songs. They are the one and only things that can snap him out of non-stop crying.

Just smiling at Papa. He STILL loves cowboy hats and loved when my dad had his on. Still a true cowboy at heart! Just has to get back in the saddle again. Hopefully someday soon! (Have to congratulate my dad on his roping this week in Reno! Got 8th out of 202 teams in the team roping! He still has it, even in his sixties! ;)  Love ya dad!)

NEVER GIVE UP DAKOTA! WE LOVE YOU!

Papa and Snowflake are ready for you ANY time!

Olson Family

So all tragedy especailly involving kids really hits home for us. Many tears have been shed at our house for the sweet Olson Family. Zach went to school with Brandon (the dad). The whole family was involved in a VERY bad car accident in Provo Canyon recently and both the husband and wife were in critical condition but are recovering pretty good. There little 1 year old was just fine but unfortunately there 5 year old son Gage died. My heart is broken about this because I know the feeling of what it is like to lose a child. Although Dakota survived those first few days were so unsure and I experienced all of the emotion of losing him and although he is still physically here I struggle every day with the loss of what he was and trying to accept what we have. It is hard to explain but I know how much these parents hearts are aching right now on top of all of the physcial pain and struggles they are going through themselves. I know money can not heal them but it can help with the stress of all of the expenses that they are going to have to face due to all of this.
SO...there are 2 different accounts opened for them at two different banks. If everyone that viewed this page even donated $1-5 we could all make a difference and help this family out. So do what you can and please keep them in your prayers!

The other account is at Mountain American:

Mountain America Credit Union account#9237216

 

I'm sure you can call either bank and transfer money if you do not live close enough to go to one of these banks. Thanks!!!

Temple

I had the wonderful opportunity of going to the temple this week. Unfortunately it has been quite awhile since I have been. Zach and I's recommends expired in March and as it always goes it seems to take forever to get with the program to go and meet with the bishopric and then the stake president. After finally getting a new one I still hadn't gone for bout a month and was feeling that push to go. As you all know my time is super limited these days so it's not like I can just get up and go when I want and have my neighbor or whoever just watch Dakota for a few hours while I run and go. So...after way too long my sweet mother-in-law who started her "grammy days" for the summer with Dakota again (which is so super nice) met me up in Logan after we got out of the chamber so she could take Dakota home and I could go to the beautiful Logan temple. It was much needed and the experience was different then ever before.

As I walked up to the doors my heart was racing and I felt almost anxious. It was really weird. As I walked in and saw the sweet temple workers there to greet me I couldn't hold back the tears. I was like seriously Tessie...already?! I just felt this overwhelming feeling "welcome home." The temple is obviously not my "home" but I felt that sense of peace, love, and safety that you feel when you are home. It was as if the Lord himself was standing there greeting me and saying..."I'm so glad you finally came. I have been waiting for you and am so happy to see you." I knew that this is where I needed to be.

As I waited for the session to start I opened up the scriptures and at one point happened across D&C 98:1-3. "Verily I say unto you my friends, fear not, let your hearts be comforted; yea rejoice evermore, and in everything give thanks; Waiting patiently on the Lord for your prayers have entered into the ears of the Lord, and are recorded with this seal and testament- the Lord hath sworn and decreed that they shall be granted. Therefore, he giveth this promise unto you, with an immutable covenant that they shall be fulfilled; and all things wherewith you have been afflicted shall work together for your good, and to my name's glory, saith the Lord.

I knew the Lord has heard every one of my millions of prayers and pleas although at times I have felt like maybe he wasn't listening to ME or maybe he doesn't care about ME. As I sat in the celestial room and poured my heart out I felt like he was right there next to me just listening to every single word. I know that no matter where you pray He hears you but for some reason in there I felt like He was closer and listening even more then He ever has. I knew my prayers "have entered into the ears of the Lord" and one day they will all be fulfilled.  I can't wait when all of these afflictions will "work together for my good." I am learning more about patience and trust then ever before and I can never let go of the faith and hope that is in my heart because when I do I am filled with despair.

I was the last one in the celestial room and I'm sure the temple worker was a little worried about me but I didn't want to leave. I felt for a little while that all of my burdens and worries that weigh me down every day were just lifted off me for a bit...not gone...they were still sitting next to me on the couch but I didn't have to hold them for awhile and it felt good. I didn't want to leave because I didn't want to pick them up again. If they would have let me I would have brought my blow up mattress and just slept there overnight if I could. :)

As I eventually got the courage to leave, walking out those doors my circumstances hadn't changed a bit but I felt stronger and more determined to take on this crazy life I'm living. I even thought for a second "bring it on...I can do this. I can do hard things." At least for awhile. :)

I MISS NORMAL

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:

WELCOME TO HOLLAND

by

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 man...no matter how often we mow it doesn't seem to get any easier over here.