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.


  1. Wow. That's a beautifully honest post. Your feelings are so valid, and so normal. I have a child with SMA, and cannot move and I'll outlive him. I often feel like he's different than his disability, he's the little guy I knew before SMA defined him to everyone else. I say that to let you know that you are
    so NOT alone. So many of us moms out there go through our own grief for what will never be, even though our children are still alive. Stay strong, you are doing great. And from this reader's perspective, you are so....normal ;)

  2. Dear Tessie,

    I have been following your blog for nearly a year now. Thank you for all the hard feelings you have shared. You have a beautiful way of saying it, how it really is. I did not know Dakota before but I feel to mourn with you. I do not totally understand how you feel either, but in some ways I do understand. I mourn for my little son who was so perfect and now he is much changed due to the progressive Muscular Dytrophy he has. He is a teen now but his life, upon looking back, seems to be in two categories. The first, when he was little and healthy and enjoyed life and now the last 5 years as he has lost so much ability. He can not walk, he can not breath well, he can not eat by himself, he can not clean his body, he is too tired to go to school. Even his personality is so different now. There is so little that he can do and now it is even affecting his ability to think clearly. His friends are leaving on missions but he needs a fulltime caregiver. It is hard and I do sometimes wonder where we fit in. I do know God has a plan for each of us, Trust in God and hang on. Thank you again for your insightful blog that lifts me up everytime you post. Ginger Benedict

  3. I am so glad we all got to spend the evening together. I don't completely understand how you feel at all...but my heart does feel lots of those emotions you described... for you guys. You are brave and strong. I love you so much!!! xo

  4. I was thinking about you this weekend during conference. Especially during the talk about children, our bodies, and the trials we experience in life. I can't remember who gave the talk, but I remember at the end they said the mothers of these sweet children are the most patient, loving, and kind mothers on earth. They are the most like their Savior... and I couldn't help but think they are so right, and that is so you! You are amazing and such a beautiful example of what a mother should be.

  5. That is so great you got to go to that concert. I've followed Molly's blog since they lost their Lucy. I went to high school with Molly. She actually dated my older brother for a while. It's funny, I see you almost every week and there are always things I want to ask you about but never dare cause I don't want to upset you, but mostly, because I know I have absolutely no comprehension of what you go through each day. So those things I always wish I could ask, end up on your blog. I have looked at you so many times and thought it must be worse than actually losing a child (again I have no idea what it must be like, I can only imagine). I understand why you would ask where you fit in. You lost your Dakota and got a new Dakota. I am so glad you can write about this and other things. It gives me a lot to consider as I look at my own practically perfect life. I love that I get to come help with Dakota. I really can't thank you enough. It brings me back to reality and makes me so grateful for all I have. I wish everyday that you, Zach and Dakota didn't have this trial. I pray everyday for miracles for your family. But I know you are touching and blessing the lives of others through your trials. I can't thank you enough for the blessing you are in my life! Thank you!

  6. You don't know me but I stumbled upon your blog and am always amazed at your strength. We too have one of Heavenly Father's little Angels and could not imagine life without her. We pray for miracles each and every day and have learned patience, love and gratitude in our little ones first few years. I have loved being able to read your blog and hear your amazing faith..our situations are very much different but I have found comfort in knowing that we are not alone and sometimes it helps to hear someone elses trials to help you through your own.

  7. Tessie, you are one of those mothers they talked about in General Conference that are the sweetest most patient kind mothers. You are so selfless. Thank you for sharing your thoughts and feelings with us all. I learn and grow from listening to you. I love your sweet family. I still remember one day when Dakota was over at my house I was vaccuming and cleaning and stuff and he followed me around in his little cowboy boots and watched everything I was doing and talked to me. That is a sweet memory I have of him. He was my little buddy that day!

  8. This blog is so honest.... I can relate. Thanks for posting this link on my blog. It helped. :)