Saturday, January 2, 2010

new year

I didn't realize how much I didn't want 2010 to come until it was already to late and it was Jan 1st. I don't know whether 2009 was the best year or the worst year of my life. I was blessed with my incredible daughter and got to spend 4 1/2 amazing months with her but it was also the year my world has completely fallen apart and I lost her. After a fun new years eve party with our friends we were faced with Jan 1 2010. Our Kenzie never lived in 2010. People wont meet her this year. People will not know her this year. 2010 was suppose to bring Makenzie's 1st birthday- I have planned that day since before she was even born. We were going to have a fairy party- all the kids would get wings and dress in tu tu's. I picked out the cutest bounce house that I know Kenzie would have loved to play in. She was going to have a fairy cupcake cake. I even picked out the outfit I was going to have monogrammed for her to wear- it was soo cute. 2010 was suppose to bring first tooth, first crawls, first steps. 2010 was suppose to be the year our little girl got to meet her uncle Ben and uncle Jonathan for the first time. 2010 was suppose to bring her first plane ride to Disneyland and her second plane ride to Washington. Yesterday wasn't a good day in our house. I couldn't get my mind off our baby no matter what I did. I cleaned, I took a long bath, I took a walk, I tried to get on the computer, I cooked- everything made me think of Kenzie and the fact it was a new year and in this year she wouldn't exist anywhere other than in my heart. I finally decided to read- I dove into this book- It was one of those books I felt like I was in the middle of its reality instead of my own. I finished it.

I guess I should also mention the other thing that has been weighing on my mind so heavily. On new years eve- Makenzies neurologist from PCMC called me. Her test results came back a little early- her test results for SMARD. It was positive.

I haven't been able to really understand my own feelings on it. One hand it brought some peace because we now have a title for what our little girl had. On the other hand- our life really, really has forever changed. Makenzie had 2 different mutations. Ryan and I both carry the gene. SMARD is genetic. If we were to have any other children it would be a 1 in 4 chance that any other child would have this disease. After talking about the results with her doctor she explained to us the option we have if we were wanting to have another child, pre-implantation genetics diagnosis. This would mean they would take some sperm and egg's and pick the ones that don't have a mutation and implant them back in me. However this is still not a 100% guarantee that the child wouldn't have SMARD, it just lessens the odds and it would also cost somewhere between $15,000 - $25,000. Aside from the money, Ryan and I are not sure if we could risk any chance of having another child with this horrible disease. To watch another child go through what our Kenzie had to go through. Should we take a gamble on another life? The devastation we have with Makenzie is so unbearable, we know we couldn't do it again.
So we don't know if this means we will never have another child? So many unanswered questions are running through our minds. We are scared, angry and feel paralyzed at this time. Not only have we lost our daughter but we cant have the peace of mind that we could at some point have another child whenever we want. We keep hearing- you have time, you can wait as long as you need before thinking of another child. So our problem, more than anything we wanted to be parents. We started our family for a reason. No we are not thinking of having a child now but its hard not to think about the future. Our would completely changed in the short time we had Makenzie. She made us better people and she brought more happiness and joy than we have ever imagined. We want that again. Right now- we just want Makenzie. Someday maybe- we hope to give her a brother or sister, we just don't know how.

I'm frustrated that everyday still feels like it was just yesterday that Makenzie passed away.


Robin said...

I am sorry that new year was so hard for you. I cannot image what it must feel like or how badly you are hurting. I love your idea of the fairy party so cute! I think that you should do that for your next b-day!! :o) I would be there wings and all. I miss you guys a lot I read all the time that you are getting out and doing things and that is really good. You heart will heal with time. And although you are not thinking about another baby at this moment. I feel like your concerns and worries are valid ones. Maybe you guys could have someone else have the baby for you? I love you both and wish you the very best!!!

Tisha and Mark said...

Your blog is always so open and honest and I really appreciate it. It is so refreshing to hear someone pour out their emotions so unadulterated- I admire you. I hope the New Year brings you peace, joy and happiness. You are always in my thoughts and prayers.

Anonymous said...

Ditto what Tisha said, 100%. You rock!

Emma said...

I am so sorry 2010 didn't start off in any way like you hoped, pictured or imagined. I am also sorry you have more decisions to make when it comes to your family. My friend who lost her little girl in April is pregnant again now, and they had testing done at about 11 weeks and the baby does not have SMA, they also had 2 little ones before their SMA if you did decide to go that route there IS hope. I know you will weight all the options, when you are ready (it might be months, it might be years, that is all on your and Ryan's time) but you will find the best option for you, whether that be having one of your own, or adopting, or surrogacy-I know you will be led to the right path. You are both incredible parents, both amazingly selfless and I know would be amazing parents to any child. Right now it will all be about Kenzie, and although it seems like it should be getting easier, that part takes will get there.
I think your bday party idea for Kenzie is beautiful, and would still be a wonderful way to celebrate her special day. I know you feel like 2010 in some ways 'leaves her behind' but it doesn' carry her, her strength, her memory forward. She has already, as you have, touched so many lives and I know with you in her corner, telling your story she will continue too. Thank you for sharing your story, yourself...I hope you find it healing in some way as I know you are helpnig others heal in so many ways as well. Thinking of you, Em

Anonymous said...

Kendra, I have been hesitant to write something before now. I don't think I could be as honest as you have been during this time in your life. Maybe that is why i feel compelled to let you know that you have truly changed my life. I always felt that i have been a good mother, no doubt have made mistakes and done things i regret, but i believe that we become the people we are meant to be because of the experiences we go through. Because of you, i celebrate the simplest of moments with my children. I spend more time with them even if it is only in silence & i don't let a day go by without letting them know how much i love them. You are an amazing woman. I think of you every day & hope that time will make your heart ache less for your little sweet pea! Thank you for sharing your life and your incredible journey with everyone.

Tara Bennett said...

Oh, Kendra, I'm sorry the new year has been hard for you so far. I just want to give you a big hug.

I'm glad you were able to get a definitive diagnosis, although I certainly wish that this diagnosis did not exist for Kenzie, you or anyone.

I do have some very good friends who had a 1 in 4 chance of passing on a condition. Theirs was nowhere near as severe as SMARD, but still scary and unwanted (Cystic Fibrosis). They did the exact process that you explained, and they were able to have two beautiful and healthy babies (twins), a boy and a girl.

I know it's still a gamble, and I'm certainly not trying to tell you what to do. I just want you to hear some positive possibilites when it seems like most of what you've heard and been put through lately has been negative.

We love you so much and truly do pray for you every single day. Oby and I would like to get together. We were wondering if you'd like a snowmobiling trip to the cabin? Or just dinner sometime? Chloe misses you and wants to give you a big hug and kiss. I feel much the same. Oby's going to give Ryan a call sometime soon.

Love you.

Unknown said...

I just came across your blog. My heart aches for you! Thank you for being vulnerable and sharing your story. Your daughter is so beautiful! May the Lord carry you when you are weak!

Anonymous said...

I am so sorry for your loss and how hard this next year is going to be. I just want you to be positive and know that if you look at things from another view your next baby would have a 3 in 4 chance of NOT having SMARD. I know you have always told me you wanted children and you were wonderful to Kezie and I dont want you to give up. I love you ...Kam....PS call me if you ever want to talk

Esther said...

I've been wondering about Makenzie's condition and if it was genetic or not. I know your future children won't replace the gap in your hearts created by Makenzie's absence, but I do pray you can be parents some day when you feel it's the right timing again. It would seem scary that SMARD is genetic, but hopeful that they can choose eggs/sperm that don't have the mutation. Zeke's birthmom got married, and had a son with her husband, and he was born with a genetic disorder too. I want to let her know about that procedure of filtering out the genes prone to the disorder. Thanks for writing about it.
I'm so sorry everyday is just as hard as the last, and it's not getting easier for you. I imagine that it will take quite a while before it gets a little better. You've gone through the hardest challenge I can think of. We are praying for you.

Alerie said...

Kendra I am so sorry that the new year was so hard for you. I am so sorry that your hopes and dreams of what you thought this year would be like are gone. Just know that even though Makenzie is not physically living in 2010, that she is living through you and Ryan and everyone that loves her. She touched so many people's lives and she will never be forgotten. Her memory and story will be remembered forever.

I am so sorry that not only are you having to go through what you are going through, but now you have many questions and decisions on your hand. I know it is hard not to, but don't worry about that right now (unless you want to). Take the time you need to take care of yourself. When you are ready you can come back to it and just pray about it. With the help of God, you and Ryan will know what is best for you.

Thank you for being so open about everything and allowing all of us to read. I pray for you daily. Much love to you!!

starnes family said...

Although I'm glad you're happy to know....I understand now what knowing means. Such a hard situation to be in. I'll pray you will soon feel good about the future.

Anonymous said...

I'm so sorry for your loss. I had some dear friends that were faced with the same issues after they lost a little boy. Because of the cost involved with adoption, genetic screening etc. They opted to use a sperm donor that had the same features as her husband. Although the child isn't biologically his, it is thier child together. Perhaps this will give you another option.

Anonymous said...

After one year of both you and your husband being on this energetic healing program, you will have healed every inherited genetic 'frequencies' back 7 generations, so they can no longer become active in yourselves, and more importantly, any future children. If you wait to conceive a child until then (one year), then all future children will have no more 'inherited imbalance frequencies' (found in Spirit before it actualizes in the physical body) to become active. They will be healthy. They will still have to 'deal' with all the 'acquired imbalances' like viruses and bacterial, environmental etc. but your child's ability to heal anything and everything will be 100 out of 100! A Mother's Dream Come True. And I am a Mother. You are given this information because you are ready for it, God meant for it to be available to all in this day and this age of humanity. Whether or not you are ready to research or try this program--is your free choice. Thank You, Kendra for healing others through your blog. Yes, healing. A Healer reminds others what it is they need to heal, then others focus on healing themselves. It is now time to learn how deep healing can go, so that once you heal the deepest 'genetic imbalances' you can have the peace of mind in knowing that you will have future perfectly healthy children, if you wish.

www.stephenlewis .org

FROGGITY! said...

it is a good thing that you can finally have some peace in knowing what you are and were up against. i know it doesn't make things easier per se, but perhaps information can give more clarity for the future. i am sure that in time you'll know what to do.

i pray many blessings for you in 2010! sending love and prayers.

Anonymous said...

So sorry you are hurting so bad, it is a hard place to be. Hi I'm Michele White a friend of Jody Riggs, I have 3 sons my oldest and youngest have SMA type one. Our oldest past away March 06, and our yongest is alive at this time. Our middle son is SMA free. It is difficult to decide again to try but go by what you feel. We know another family that has adopted and are very happy.


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