Friday, March 30, 2012

Where do WE fit in?!

So I went to the amazing benefit concert last night..."A GOOD GRIEF" with my lady friends! I didn't say a lot about it on my last post but it is put on by a amazing woman and mom who lost her little 2 year old daughter 4 years ago because she choked on an apple. Here is a link to her blog if you are interested in learning more about this incredible organization a good grief.

Anyways, she started this organization a good grief to help families who lose a child purchase a headstone. Isn't that the coolest thing! So the concert helped raise money for this great cause. It was very good but a bit emotional as well. The singers all were amazing and so talented. At the end Molly sang a beautiful song called a beautiful heartbreak and had a slideshow of several families and kids that had passed away. Our sweet angel friend Dylan was one of those kids and as soon as his picture popped up I was a waterfall. It didn't help that I was sitting right next to his most beautiful and amazing mom Mandy!

Some hot mamas! (Molly is the one in the black dress in the middle who is obviously the only pregnant one ;) )

After the concert on the drive home when it was just Chelsea, Lindsay, and I (Dylan's aunts) they were asking me some questions that got me thinking...where do we fit in?! As they were asking me about some of my feelings with Dakota it was interesting to say them out loud. They were answers to questions that I think about to myself, but have never really spoken aloud except to maybe Zach. So today as I was thinking about them I have to wonder where do we fit in in all of this?!

What I mean by all of that is...last night they had all the angel parents (people who have lost their children) stand up. Obviously I did not "lose" my child because he is still physically here with us but I still consider myself an "angel parent" in a way because I lost the little boy I once had who was an angel and a different kind of angel took his place...does that make sense? I'm not trying to say I wanted to stand up becuase I don't feel like I can TOTALLY relate to this category of parents who physically lost their child. I didn't have to bury my child and go through the whole pain of planning a funeral, picking out a headstone, and worst of all not being able to physically see and hold my child again. I can't completely comprehend how all of those events feel and are like.

But at the same time I feel like I have experienced somewhat of the same degree of pain, sorrow, and grief that these parents have felt because the little 2 year old boy who I knew and loved so well is gone. He was replaced with a different little 2 year old boy that I still LOVE dearly but it is different. It's hard to explain...but it's as if the boy I knew no longer exists...when I look at the pictures before the accident I still cry like those parents must do...because I miss that boy SO much it physically hurts inside. BUT I have a different little boy that looks a lot like that boy who I love just as much as I did that boy...he is just different. He cries different, he laughs different, he looks at me different, his facial expressions are different, his body moves different, his sounds are different, his breathing is different, and I love him differently then I did before. I care for him completely differently, I talk to him differently, we play differently, I feed him differently, EVERYTHING is different. In a matter of minutes my whole world was different.

The hard part is I don't ever feel like their was a closure to the loss of that boy who we once knew. Children that die have a funeral where you get to celebrate their life and who they were and get to rejoice in the fact that they are in heaven...a place far better then this earth life...a place where they are free from all worry and pain. It doesn't take away from the pain and loss that the family has but it is a way to celebrate them.

In our situation I feel like the Dakota we knew is just gone and forgotten...noboday asks or talks about that boy just this new boy...excpet Zach and I of course. We are constantly talking about things we used to do with him or who he was. Everybody wants to know what he likes or does now and that is fine but I want them to know the other Dakota too because that is who he really is. To me...that boy is who lives in my heart and who I see deep inside this little boy but it's hard to tell. At times I can see glimpses of him in there and I pray desperately to see more. Also I sometimes feel it is not fair for Dakota to have had to stay here on earth. I think he chose to stay for me because I couldn't have handled not being a mom anymore...having that gift taken from me. But at times I wonder why he has to physically suffer from the loss of being able to use his body how he wants, to communicate how he feels, when he once was able to do it all. Why does anyone have to?! I have to live every day wondering if he is truly happy where at least if he was in heaven I would know...I would have that sense of peace. Cuz like all parents...we live for our teach them and see them happy.

On the other hand there is unfortunately a large group of families out there who care for angel children like Dakota that have a wide range of disabilities...but most often these children were born with theres. I feel on a large level I can relate to almost all families that care for a child with disabilites because it is a huge task that your life revolves around. I understand there feelings of despair as well, because like me, they didn't ask for this trial to be placed in their path and they like every parent, longed for a perfectly healthy baby but instead was given an angel child to care for with more love and patience then they knew existed.

At the same time I feel like I am in a different state then them even because I had a healthy boy and after 2 years of knowing and loving this boy, out of nowhere he changed. I have only physically met 2 other family that has experienced what we have. Besides that I have heard of a few other families but no one with whom I really know or can connect with. I feel like this is a smaller group of people that is not as well sometimes I feel alone in my feelings. I don't feel like I can completely relate with either group and I don't feel like there are many that can really understand what I feel.

My heart is bigger then ever before beacuse of these experiences and I can place mysef in almost anyones shoes and feel a deeper and stroger love and compassion for ALL people no matter what they are going through...for that I am thankful. But besides Zach, I don't know of anyone who can completely understand what we have gone through and the pain and confusion that I still feel in my heart every day.

I AM grateful for the love of my Savior who has walked these roads I am on. I know that HE knows and understands and I long to come closer to him so that HE can provide me the comfort and relief that I so desperately need.

Monday, March 26, 2012

This Little Miggy

So this amazing mother of a beautiful little girl with disabilities has a blog. Every week she highlights a different kid with a disability and she asked to spotlight Dakota. So this is a little late but he was spotlighted on her blog last Friday. Check it out here. Dakota was the first kid ever to be spotlighted that wasn't born with his disability. If you have time take the time to read about some of the other amazing kiddos and their families! Also she just posted about an AMAZING benefit concert coming up this Thursday in Murray. I have been meaning to post about it but haven't had the chance yet. Check out the flyer. I already have my ticket and can't wait to go!!!

Thursday, March 22, 2012

Q & A/ Dakota update

So, are computer has been out for the last few weeks and it has been so hard. Computers...I love them but I hate them!! I have been able to still get on the Internet and check things on Dakota's Ipad but I hate typing on that thing so that is why my blog has been so quiet lately. I have missed it and now I have A LOT to update so the posts are gonna be flying off the hook for awhile til I catch up on life! ;) (yes I said it...flying off the hook...I am so gangsta!)

Anyways so my first real Q & A:
I just found your blog and have been reading back through some old posts. I don't have time to read everything, so I would love a summary of where Dakota is now in his recovery and what progress he has made. I am also interested to know more about your husband's blindness--how it happened, how much vision he lost, etc.

This has been something that I have wanted to fix for awhile but am not sure how. I realize for someone that doesn't know us at all and just gets on my blog, it is a little lengthy and confusing to get the big picture of what we are all about but I don't have the technological skill to figure out how to organize it to make it a little more reader and user friendly. So I am reaching out and turning this Q&A post back on my readers for help. If anyone has any ideas or know hows, how to make it very easy and clear about Dakota's accident/story, Zach's blindness, etc easy to understand and see when a first timer gets on here I would LOVE, LOVE, LOVE some help or input.

I have thought about tabs on top but have NO idea how people do that...I am very limited on my computer skills here. If you read my first ever blog you will know I only have this blog because my awesome friend Abbey set it all up for me and all I had to do is type and add pictures. I have learned a little more since then but not much!
I know I am WAY overdue on updating about my Dakota man (so thank you for asking that question and forcing me to bite the bullet)...I have been meaning to for a long time now but it's one of those posts that I know would take me awhile to get it done so I kept putting it off for a day that I would have time...and for some reason that day never comes so I'm just gonna bite the bullet and get it done!!
(So here is the answer for the first part of the question about Dakota. The second part about Zach I will hopefully answer later when I revamp this will come I promise!)
Over the past few months we have continued to see some great improvements that have brought us a lot of joy.

One of my most favorites that I have prayed for continually is more interaction and eye contact. He has really evolved in this area. He now will look at you when you talk and play with him and even smile back at you if you are funny enough or he is in the mood. ;) I missed that communication and interaction. I have longed for a feeling of connection with him again and I feel like it is finally coming around slowly but surely. He melts my heart when he looks at me with those BIG, GORGEOUS eyes and gives me his most handsome smile! Those moments are truly what get me through each day. I can tell he is listening and understanding most of what we say even though he can't communicate back to me. Sometimes when I am talking to someone else about what he is doing or girls at school or something that he likes he will give a big cheeser like (yup she's talking bout me). Last night Zach got home from working (yes he started back last week and I miss him being home already!) and when he walked out of the room Dakota and I were in Dakota started crying. I said, "do you want daddy?" and he immediately stopped crying and just looked at me like yes! When Zach came in he smiled and then Zach was holding him on one couch and I was on the luv sac across the room. Dakota kept looking over at me and then making a sad face to Zach. Zach said, "do you want us to go sit by mommy?" He stopped his sad face immediately and smiled and looked at me. Zach came over and sat with me on the bean bag and Dakota just smiled got it! I can't imagine how frustrated that little mind is in there not being able to just use his words to tell us what he wants like he used to. But his eye contact and interactions with us are improving and that is way more important to me then if he ever walks again. I want to have that connection with us. I want him to be able to communicate with us, understand us, and just be happy. He is a lot more happy...smiling and laughing more and more...and like any parent...all I want is to know that he is happy!
We took him to go visit Zach's grandma the other day and he was SO cute with her. We put him in the bed next to her and I didn't think he would stay there very long but he totally just snuggled up next to her and was just chillin
Snugglin and happy

Just chillin and relaxin
Another huge thing is he is finally getting the rolling down and he is pretty proud of himself for that...and so is his mommy! He can't do a full log roll yet but he rolls from his tummy, to his side, to his front, back to his side, and back to his tummy. If he keeps his arm underneath his body when he rolls to his tummy he can make it back over to his back without much trouble. If he pulls his arm out from under him then he gets stuck. He will just lift his head and legs up and try to roll but is stuck (like superman). I am trying to teach him to bring his arms up by his head to get unstuck and he seems to be trying to more now but hasn't totally caught on.
Made it to his side

To his tummy

Headed back to his back
Stuck in Superman

Still proud of himself

Some more capturing the process...doing it even while he eats...that is skill baby!!
(One time he rolled so far over he pulled the whole g-tube out of his stomach while eating. We have to watch him a little more carefully when he eats not ;) )


got it!

The whole rolling thing is amazing though. He could roll from his tummy to back for a long time now but never from his back to tummy. Every once in awhile he would accidentally do it but it was a very rare moment and you could tell he wasn't quite sure how he did that. Then he seemed to do it purposefully a couple times and one morning he did it like 10 times in a row and then didn't do it for a couple weeks. Now it is like an all day thing. If you lay him on the ground he will almost always try to roll over immediately and he sometimes gets, this grin on his face like...yup...I'm the man...I can do this all by myself. I think it must feel so good to him to be able to do something with his body that he wants to do. He is still not coordinated with his hands and movements to grab toys and play like I know his little mind wants to do, so to be able to move his body how he wants has to feel pretty dang good. Imagine you being trapped in your body...not being able to move, grab things, itch, or whatever but wanting to so bad.
He is also moving his arms around a lot more and will reach up to something that I hold but still not super coordinated enough to have the control to grab it.

He started occupational therapy again up at Cache kids where he has his physical therapy. They are really cute and do fun things with him there but he sees OT and PT every other week so it's not enough to really change is still all up to us of course.

Swinging with PT

He LOVES the swing!

Working on his baseball skills


He loves going upside down on this ball...not sure why but he smiles every time!

OT making him use his legs to push him back.

So we still do his NACD therapy every day. I have my most AMAZING daily helpers/volunteers that come over every week to help me try and get all that I can in because most of his therapy program I need 4 hands and I only have 2 unfortunately. These woman that help me are amazing and Dakota and I truly couldn't do it without them. It is therapy for me too...I must confess...because I get some adult conversation while we do it and they probably hear and know more about me then they want to. ;) I enjoy the company though.
Making him hold his crawl position.

 Zach says I am a slave driver because I am ALWAYS doing therapy...but someones gotta do it and he never wants to be the bad guy so it is up to me. (I need more pics of the other things we do...this is an old one as you can see the Christmas tree in the background. Trust me my Christmas tree is not still up...although it wouldn't surprise me if it was ;) )

Zach just likes to do the fun stuff like snuggle and take naps together!
You can't blame him though! It looks pretty comfy and cozy to me!

And playing in the bath!

He is getting a lot stronger with his sit to stand which is of course building those leg muscles. When he wants to he pushes a lot better with his crawling exercises and is getting a lot more smooth with it. (Just like all kids he has days where he just doesn't want to do it and those days are a little frustrating but I understand he is a 3 year old and that is just how a 3 year old is). We started using pixie sticks as motivation...when he reaches the end of the crawling he gets a little taste and that has seemed to help motivate him. Kids love their candy! Overall, he has gained a lot more strength throughout  his whole body. He holds his head up a lot stronger but still doesn't quite have enough control to keep it up all the time but it has gotten much better.

We still go to swallow therapy in Logan once a week and he LOVES that! He gets lots of treats and is getting better at swallowing and sucking. Still has a way to go but improving none the less!
As far as the trach goes he is still capped all day (so breathing on his own, not using the trach) so that is great. Unfortunately he is still needing suctioned 1-3 times a day so we can't get the trach out until he can cough it all out on his own and no longer needs suctioned. He is coughing stronger and more often but for some reason he doesn't get it all up. Not totally sure why...if it's too thick, if trach is in the way of some of it, or what. He does keep his O2 (oxygen) stats up all day though so we don't have to suction him because of his o2 stats...more just because he coughs and coughs and it doesn't all clear and then he gets frustrated or if he is going to bed and I don't want all that staying in his lungs.
Not sure why but he is still needing oxygen most nights which means I am up 1-2 times a night turning it on at some point in the night or fixing the humidifier that he has knocked off of his trach.

He is still sleeping pretty good for the most part but waking up earlier lately. He still has nights (like the last week) where he will wake up in the night for some reason but for the most part he doesn't cry or anything just hangs out and moves around some and then goes back to sleep by himself so I don't have to get up with him...just check on him, change his diaper, suction him if he needs it, reposition him in bed, and then I go back to bed. Did I mention I LOVE sleep. I don't get a ton of it but I love it and need it or the emotions really shine through! ;) Whenever Zach and I think back to those months when his sleep cycle was SOOOO off...we really aren't sure how we survived those months. There were LOTS of tears and emotions and life was really crazy. I don't even like to think about it, but when I do it does make me grateful for where we are at today!

He is still liking preschool the 2 days that he goes and the girls are still loving him! ;) It makes me so happy that the kids are still so sweet and receptive to him especially because he cant give much back to them except his most amazing smile...which is killer I'm sure to the ladies! ;) His school nurses have told me that other kids that they go to school with, the other kids in their class and even teachers just kind of ignore them and expect the nurse to just do everything which is not there job. That makes me sad for those kids but SO grateful that Dakota has had great teachers and friends at school.

We have been able to get him off most of the meds he was on to where now he is on only 3 and one is just Prevacid that he will always have to have as long as he has the g-tube just to protect it.
In case you can't remember he was once on all of these!

So we have come a long way with that which is so nice. I'm not one of those anti-medicine people but I feel a lot better knowing that he doesn't have to have so much crap going into his body and affecting it in so many ways. Some of these he has been able to get off of just as his brain has healed and he has gotten better and some of the he has been able to get off of just from me making him healthy real food instead of the cans of formula he was on. We are hoping to start weaning him off of another one here pretty soon too!

We also received some exciting news last week that we are finally at the top of the list with the Medicaid waiver to get respite hours. Medicaid has a program for families with kids with trachs or on ventilators to receive free nursing hours to help give families a break. They can only have so many kids on it at a time so we have been on the waiting list since Dakota's accident. I didn't really ever think much about it because I hoped he would have the trach out by the time we would ever get it, so it wouldn't do much for us. Unfortunately we still have the trach but we can now have respite hours. So right now we get 40 hours a month to use however we want...during the day or night, date nights, or even if we wanted to go on vacation for a few days. The best part about it is I get to use the nursing company that goes to school with him and I LOVE his nurses and he seems to like them too. I feel completely comfortable leaving Dakota with them whereas the nurses we had at night in the beginning I would have never felt comfortable leaving Dakota alone with them. So it is great news. I am excited to be able to go to the temple more and just have a little time to myself knowing Dakota is in good hands...especially since Zach is working again and won't be around as much to help out. (I even get to go to woman's conference this year with all my sisters and mom!!! Can't wait!)
Zach started back to aerating this week and in mid April will start the landscaping full swing. He works really hard and long hours all summer so it will be nice to know I have help if I need it (not that the Friedlis don't help us out a ton already but I feel bad ALWAYS having to go to them).

Every day is still a little unpredictable with this kid. Just when we think we got a good pattern going on he throws us a curve ball and changes things up on us. He is always keeping us on our toes but we love him to death! We are so proud if his every accomplishment and continue to hope and pray for SO many more to come!

Daddy wants to wrestle you in the grass again!

Sunday, March 4, 2012


These are what Zach and I call them. They are hard to describe but I will do my best. Moments are when your heart aches so bad that tears flow out uncontrollably. You can't prepare for them because they come without any warning. They come anywhere, anytime, no matter who is around. They can come while your driving in your car, in the middle of the store, at church, at home, even at the Taylor Swift concert. There is no one thing that sets them off, just a million random things that you are never prepared for. It can be a picture, a memory, a thought, a child, a child standing at a bus stop, a saying that pops into your head, a whole culmination of events that finally hit you like a ton of bricks. If you are around people you can try and hide the tears that are sitting right on the surface but I don't think I ever fool anyone. And as soon as you are alone they come out uncontrollably until you can't cry anymore.

They used to come almost daily, then weekly, and now they aren't as frequent...just random times. Usually Zach and I have them at different times but we can tell when each other are having one and you just say...You having a moment? And that is all you need to do. There is nothing you can say or do to help the other...just let the tears flow. When you are done, in a small way it feels a little better to have let them all out. It's almost as if they were waiting, just sitting there for somethings to tip them off.

Tonight Zach and I both had one at family dinner. I looked at him sitting on the couch in the middle of me trying to keep them in so that everyone around me wouldn't think I was crazy (cuz one minute you are just fine and then BAM...there is no way to explain it or expect anyone to understand how bad it hurts) and I could see in his face...even though the tears weren't coming out that he was having one too. When we got in the car all I asked was...did you have a moment? Then we both just sat in silence crying the whole way home.

I don't write about this for anyone to feel sorry for us...just to explain the feeling because I'm sure there are many others who have there own "moments" just didn't have a label for them. Anyone who has lost someone they love, struggled maybe to have a child, gone through a bad accident or illness with a loved one, or have just gone through a really hard trial I'm sure knows what these are.

I wasn't expecting one today but it came and went. To help me break out of this moment I read a letter that a dear, sweet lady whom I deeply love and adore wrote to me. I won't tell who she is because she is so humble and sweet that I know she would want no recognition but I hope she doesn't mind I share a few of her words that bring a ray of hope and sunshine back when I need it most...
"You will probably never ever realize here on earth, what your journey means to others- but when we stand before God in heaven, I believe Jesus will be by your side and maybe say something like this: "This one is mine, Father God. She is my child." Then He will turn and say, "Well done- my true and faithful servant." And then your dear heart, Dakota, will run and jump into the arms that have held him so gently- and the hands that have so tenderly wiped his tears away- and look into your eyes and you will hear, in the strong voice you know so well, "I love you Mommy." "

I don't know how it will be in the end...but reading those words bring me a little bit of peace, hope, and joy that I know will one day be fully mine if I endure this life here on earth to the best of my complete ability. I know these moments will continue to come...I don't know when the next one will be...but I know even through the tears that there is hope for a brighter future whether in this life or the next...and I can't WAIT for that day when Dakota will run into my arms again and I can hear his most precious voice again!!!
Until then I will keep on keepin on!

This amazing lady also gave me this song with her letter...listened to it A LOT today. Take a listen and really listen to the words...AMAZING and BEAUTIFUL!! (Maybe my healing is coming through these tears???)

Friday, March 2, 2012

Q & A

So...I have been thinking bout this for awhile. I know I'm not the best writer...I know there are a lot of gaps in the things I write about from one thing to the next and sometimes I forget to go back and finish or continue to write about things that I previously wrote about. Things just make a lot more sense in my head then how I write them. So...when my family or close friends ask me questions about things with Dakota or us that I thought they already knew...then I really realize how much I leave out in talking to people or on my blog that probably leave a lot of unanswered questions out there.

So...I personally LOVE when bloggers do Q & A's (question and answer) posts because sometimes I have questions that I want answered or other people ask awesome questions that I hadn't thought about and I love to read them. So, since I am not horribly good at commenting back to people in the comments section I thought I would try my best to do posts on any questions people have whether it's about Dakota, his accident, his therapy, Zach's blindness, life in general, my insanity, what I had for breakfast ;), ANYTHING!! I am a little slow at getting to my posts....I always have a backlog of things that I need to write about but I will answer them as they come in...eventually. :) I LOVE all the comments from all of the amazing people out there...ones I know and ones I don't! I read and love them all so please know that I appreciate the love and support given by EVERYONE!!!

So my first Q & A was actually asked in person to me by a friend and neighbor. She asked specifically for me to write a blog about this because she thought there was probably many others who had this same here it goes. She was so sweet and sincere when she asked me this and I appreciated that she would really care to know thank you!! (I won't write your name cuz I'm not sure if she wanted to be known or not...but you know who you are and I love ya)!

She asked me: How do you want people to treat you and Dakota? She said that when she is going though tough times she doesn't really like people to talk to her so she wasn't sure how I felt...did I want people to come up and talk to me if they saw me, are we still worried about Dakota and germs so do we not want people touching him, or inviting him places???

This was a very interesting question to think about because it has changed over time since Dakota's accident. I thought by going through the different stages we have gone through with this it might help others who are trying to help others going through a difficult time...but the hardest thing about it all is everyone is a little different...even between just  Zach and I.

When Dakota was in the hospital it was a VERY intense time for us as you can imagine. We DESPERATELY needed our parents by our sides almost always but we also of course needed times alone together and alone with Dakota. Both of our parents were amazing to ALWAYS be there when we needed them but give us alone time when we needed it as well. Zach's siblings weren't close since the accident happened in AZ so my siblings came almost every day to see us and that meant a lot to me. I needed them at moments more then anyone else. Mostly at that point we didn't want to see many people because we were so emotional. There were a few very special people from my parents ward that I grew up with that came to offer prayers around Dakota with us and participate in priesthood blessings. That was VERY much needed and appreciated and I still remember the words Elder Lesuer said to Zach and I..."Do you have faith?" That was it. Simply spoken but powerful. Make you think kind of words. My old visiting teaching companion in my home ward who I just LOVE and adore (Lori Lyman) came by just to sing to Dakota and hold his hand. She didn't even let Zach and I stay and listen she just wanted to be alone with Dakota and that also meant so much. We got A LOT of texts during that time and those meant a whole lot to us! A few friends stopped by for quick visits, hugs, and gifts for Dakota and us. Even when you didn't think you wanted to talk...the hugs felt SO good to me. A hug was worth a million bucks during those times and I'm not even really a hugger. Many things were sent to us by loving friends and family that were back in UT and those also meant a lot to us. They were a way of showing how many people loved, cared, and were thinking about us but yet we didn't have to have that face to face interaction.

When we first saw and hung out with friends I think I felt a little anxiety at first. It's like we almost felt like we were different people now in a way and that no one would be able to understand us anymore or like we couldn't relate to them anymore. But it was nothing like that. We felt a deep and sincere love by many and seeing other people shed tears for us (not that I wanted them too) but it made me realize they really did care about my little boy and they wanted to help. After the initial first seeing them (remember it had been months since we had seen them) that fear went away and we enjoyed their company again.

Going to our home ward for the first time was a lot of those same feelings. We knew people would wanna come talk to us but there was that same sense of fear. We didn't take Dakota for a long time so we didn't have to worry bout germs, it was just our own insecurities. I remember being completely fine and then my friend and Dakota's nursery teacher came up and talked to me in the hall with tears in her eyes and I lost it. But it was okay...I felt her love and I felt okay to cry in front of her.

At this point in our lives, a lot has changed and as time has gone on obviously some wounds have healed, the tears don't come quite as often, Dakota has progressed a lot, so feelings are different. Zach and I are totally different though. Zach used to be a very social guy when we were dating and slowly has become more of a homebody since we have been married and especially since his blindness and Dakota's accident. He doesn't care much for social gatherings or talking to people although when you are around him you would never be able to tell. He is so fun and outgoing and a blast to be around and is so good at talking to anyone and everyone but yet he would rather just be home talking to me and Dakota. (Maybe we am just that fun?! ;) ) Where me on the other hand I love going out and doing things with friends or whatever. I am a total fun haver so if anything fun is going on, even if it involves talking to people, I am there although I am a little shy around people I don't know well so it's kinda weird. Dakota, is doing much, much better in a lot of ways so we are not so afraid as we used to be to take him places or have him around other kids. He LOVES and I LOVE when kids and adults are not afraid to come up to him, talk to him, and touch him. I remember the first time we took him to church, cute Pam Parson came up to him and kissed him right on the forehead. That meant so much to Zach and I that she wasn't afraid of him and just showed that she loved him no matter what. That is what I love most about his school. There are a few girls there that just love him. They hug him, kiss him, hold his hand, and just play with him and I am SO grateful for that. I understand that some kids personalities are more fearful of him and I TOTALLY understand that as well. Just seeing the difference between his cousins lets me see that that is just how it is. Some of them are all over him and others are a little more standoffish and that's ok. For him I just want him to be treated like a kid. I want him to be involved as much as he can with any kid activities. Obviously there are some things he just can't do but as his mom I want him to be able to experience being a kid as much as he can...because I know that little 3 year old boy is in there dying to just be himself but his body won't let him. I often try and think how frustrated and upset he must get that he can't do or tell me what he wants. I want people and kids to feel comfortable asking questions about Dakota so that they can understand him and not be afraid of him.

The biggest thing is that we want to be treated like any normal person. Obviously we are not normal ;) but we would like to be treated that way. We don't want anyone to come talk to us just because of what we have gone through and they feel like they need to be nice to us...we just want sincerity. If you really wanna know how Dakota is doing or how we are doing that is just fine to ask but I don't want anyone to ever feel like they have to ask to be nice. I don't know if that makes sense...but sincerity is the key word. I have ran into people that I have never met in the store that read my blog and they have been some of the most sincere people I have ever met talking to me and crying with me but yet I have never met them...but I appreciate them.
So, all in all...just keep it real! ;)