Tuesday, July 31, 2012

Tired but grateful

Justin and I just walked in from taking our oldest to the ED. He was diagnosed with Bells palsy or 7th nerve palsy which is what we expected. Jaden has not had as much function as he should with his right cheek. We noticed it Sunday morning, when he would smile he was only doing half a smile. Initially I did what every mother of the year does and I thought nothing of it. Then as the day went on Justin and I grew more concerned but not overly. We talked to Jaden and he said he hasn't been chewing on that side of his mouth because he felt like he had a big divot in his tooth and he didn't want to get a cavity in it. :-) My reaction was possibly his cheek muscle had lost a little function because of his non chewing so we told him to work on getting those muscles back in shape. Long story short it wasn't getting any better and tonight about 8pm we called our pediatrician and they said that we should take him into the ED. Knowing that we are really close to our out of pocket maximum with our insurance we decided that it would be a no brainer to take him in and get things started as soon as we could.
Today is Jaces birthday so we hurried and sang happy birthday then we left the boys with my brother to dish up the cake. Jaden took a package of Jaces new legos that Jace was more than happy to let Jaden put together, and that kept him pretty busy the whole time. Our wait in the waiting room was fairly short, we only had time to watch half of a butterfly swimming race for the olympics. Interesting side note, we watched the olympics while our second Jaxon was in the hospital as a baby. For those who don't know we were given a 99% chance that he would NOT survive the first night after his heart surgery by an attending physician. We were in the room with his surgeon, who was just there monitoring him, we were all watching rowing when Dr. Hawkins said that Jaxon was going to be ok. Anyho the nurses and doctor were great. The doctor came in and really did a great evaluation of Jaden's symptoms. He was concerned that Jaden was so young. I looked up another stat that we are so good at reaching and it is less than 13 in every 100000 people under 13 years get bells palsy. He then went to go call Primaries to see what route to take. When he came back he said that he was going to put Jaden on a high dose of steroid and an anti viral to try to help reverse the droopy effects quicker. All they had were pills and Jaden did a GREAT job on three of them. The last one was quite large and we crushed it and put it in some pudding. We are happy that he has a good prognosis and that it is likely that he will regain all his function of that side of his face. We love our Jaden buddy!
While we were waiting for the doctor Justin looked at me and told me he was tired. We are both so tired of this emotional roller coaster we are going through. Then as we were talking Justin said "and we don't even have it bad" He was right!! We may just be exhausted of the day to day things but we are really well off in everything. We are continually blessed every day and thank our Father in Heaven every day for the chance that we have to spend time together with our children. Please excuse any grammical errors. It is late!

Friday, July 27, 2012

Stitching love

Yesterday my mom and I started cutting and sewing Joys quilts. I wanted to make two quilts for a couple reasons. I wanted her to have something super soft and filled with love to be wrapped in while she was here and also after she was gone. But I wanted to keep the one I held her in and remember what the one she was buried in looked like. So I decided to make two quilts exactly the same. My mom did all the cutting and I did  all the sewing with the exception of sewing all the blocks together on the first one and a few other things on the second one. My friend Mandy and I were going to go to the temple together and I also had primary visits that I told my friend Abby (our primary president) I would do with her. So I didn't have time to help my mom get them all the way finished. It was a fun day filled with lots of chatting and laughing. We missed my grandma who was supposed to be there but was sick. When she called we all had a good laugh. All in all it was a very successful day sewing for me since I have never actually sewn a quilt and we were able to get both of them done. I also found I have a love for a nice sewing machine. Don't get me wrong, I love my machine and more than that I love that I got one for Christmas from my parents right after I was married. So I have pretty much always had a machine. But it was really fun getting to sew on my moms machine that I remember her having when I was little. The quilt will not have any batting and the back with be a white minky with a cute paisly print on it. I took it to my sweet friend Leisha Farnsworth to get quilted and I am excited to post pictures in a couple weeks after it is done getting quilted. 
Thanks mom for a great day and helping me not cry too much. 

daddy daughter

I know I talk about Justin a lot and everything he does to hold me together. He is such a fantastic spouse a wonderful father and he is solid in the gospel. I notice that people tend to always ask how I am doing and not Justin. I think there are many reasons for that, the biggest one being is that my body is the one changing to house this sweet baby. Justin is a typical guy and really does well emotionally with everything. It is still hard for him though and in a lot of different ways. The stress of all the funeral preparations the pregnant wife (which is enough all on its own he he), the four boys that need his attention, paying for everything, not taking any vacation time so he can save it all to take care of me after, a huge test in August for another certificate, living in a old house that needs constant attention and a lawn mower that doesn't like to run and decided it doesn't need a back wheel...silly thing. And so much more that he carries on his shoulders everyday, but never complains. He is such a great example to me of service and love. I know the hardest part for him is not being able to really get to know her like I do. I cannot wait until I get to see her in his arms. I know his heart will just melt holding his daughter and she will love her daddy. I am so glad he will get to hold her first, he is always there to take our children as soon as the nurses are done so he can bring them to me, those first few seconds watching him with her will be irreplaceable. She will have his heart forever. 
He always talks about how this experience with Joy will continue to bring us closer as a family and closer to our Savior. It is a wonderful experience watching the love of your life grow closer to the Savior. We get to have a very sweet and tender experience having such a special perfect little girl join our eternal family, and have a wonderful opportunity to teach our boys what is really important here on earth so that we may live in a way that we can see her again. I love having her near. At night and in the morning we can always count on her to put on a good little show. I could lay there and feel her move all day. I kinda joke, I don't know maybe I will really do it, to Justin about just wanting to lay down and take in every movement the day before our c-section. I love life more now than I ever could. I have a spouse that truly loves me, children that are the most wonderful things in the world, I am closer to my Savior and Father in Heaven and I have a family that is all together here on earth and eternally bound together.   

Wednesday, July 25, 2012


My sweet cousin told be about a friend who has a blog called Wink from Heaven. Their little boy was born with hydranencephaly and I believe the only difference is that he had his skull and Joy will not. He also had an eyelid that was permanently fused so he was always winking. He is a beautiful baby!.As afraid of constantly crying as I am I usually don't seek out blogs on my own so it was very sweet to have this one shared with me. Their little boy lived I think almost 8 years and this sweet mom just talks about what a miracle he was every day and shares such a sweet and strong testimony and you can feel how much she deeply loved her sweet little boy. It was so touching to read her words and think "I feel just like that" and she explains her feelings so well. It is hard for me to write down my emotions and I would always rather write about happy stuff. I feel a lot like Marjorie Hinckley where she says "you can either laugh or cry. I prefer to laugh, crying gives me a headache." I am constantly trying to find the good in our situation and I try to keep a smile on my face. Just knowing how special she must be to her Heavenly Father and how special she is to us is enough to give me a smile. But sometimes I just need to cry and feel sad that I will have such a short time with her here on earth. And feel sad that my boys don't to kiss on her sweet little cheeks every day because I know they would. One of the things that this little boys sweet mom said was "I never thought I would hang a family picture without my whole family in it." I think that sums up my heartache. I am almost 30 weeks which I am so grateful I have made it to. But it also means we have known for 14 weeks and only have 6 weeks left with her. The other day someone asked Justin if we had overcome the crying phase and were able to live life normally. I don't know that we will ever overcome the crying phase, it will get easier and the time will help but she will always be there and I will always miss her. I also know life won't be the normal that it was before when we were planning on having a healthy baby in the fall. We have changed so much and become closer as a family and closer to our Heavenly Father. We are different people. We will find a new "normal" and be, even more-so, full of joy.
Now that I feel so much better being sad and crying for a while, bring on tomorrow. I know it is going to be a beautiful day!  

Monday, July 23, 2012

Baby cry

I heard a newborn baby really cry tonight and it got me a little emotional. Funny because I have heard my newborn niece cry a little (she is a quiet little thing) and it didn't even phase me. I started feeling sad for myself that I might not even get to hear my baby Joy cry. I put it behind me and tried not to think.
Tonight when I was winding down for the night the instance again occurred in my mind, but this time I felt an overwhelming feeling of gratitude that I have been blessed to hear four of my own beautiful children cry. I have been so blessed to be their mother and devote my life to raising them. We have many dear friends who have waited or are still waiting longer than we ever would want to wait to hear their own babies cry. I definitely do not know the silent pain and anguish they have or are experiencing and now more than ever my heart aches for them. 
If I don't get the chance to hear my sweet Joy cry I can surely remember how blessed I am to have already had the chance to hear my babies cry.  

Thursday, July 19, 2012

Being brave

So from the very beginning of our journey with Joy I have been completely frightened about searching out information about anencephaly. I have had doctors tell me it isn't something I just search on the internet and Justin was very careful saying that when I was ready that he would show me pictures and we would work our way through. I think he is really careful because he has seen the medical pictures that he says are not very kind :) Mostly we don't know what Joy will look like, there are so many differences every baby, and no matter what she will be beautiful to us. We are hoping to have a 4d ultrasound a couple weeks before she is born to try and see how deformed (seriously I hate that word but it fits) her head is. Even still she will look a lot different but it will give us a little glimpse and we get to see her move around which is always a blessing.
About a week ago Justin found a really good website called anencephaly-info.org or something like that :-) It is a website where parents go and write their stories and post pictures of their babies. The boys totally loved it, not at first but they were really ok with it and very interested. I did ok, couldn't stop crying the whole time, but ok. I just had a hard time with the pictures that were taken after death. I hope and pray we get to have a few pictures with her before she leaves.
We didn't read many of the stories, a lot are really sad, but we did read a couple. It just hit so close to home seeing all those babies and knowing the despair their parents must have felt.
I am so grateful I get to have my baby forever! It doesn't take away the tears or heal my heart all the way, but it keeps my mind at ease and keeps my heart from aching all the time. To know that we have such a loving Father in Heaven and a perfect Savior that will keep my sweet sweet babe for me until I get to have her again gives me a feeling of utter love and devotion to Them. What an amazing plan They have laid out for us with such love.
I know They will help us get through this and I know They will never leave our side. I was so sad reading some of the stories that were just utter despair and sadness.

I know ours will be different.

My dear Joy thank you for choosing us. We love you more than we could ever express and cherish every time you kick and move around. We can't wait to meet you but we are completely happy where you are at :-) Our family is all together now

Sunday, July 15, 2012

Joy's new blog

I finally decided that I would make Joy her own blog. I have a lot of family stuff to post on our family blog and I would also like to be able to reach out to people a little better that might be going through the same thing as we are. Or have people find us who have already trod this path. So it was best to post stuff that was only hers on her blog. It will still be on our family blog as well and a lot of family posts will have Joy in them, I will backdate her previous posts and then only put the part about her on her blog. Make sense? :)
Her blog is ourjourneywithJoy.blogspot.com. Please spread the word. We would love to meet other people who have dealt with anecephaly and we would love to swap stories with them. Feel free to follow either blog just note that Joy's will be open and I will be going private again soon with our more in depth family blog. And also beware that I have a lot of posting to do! :)
We have also had a few people ask us about how to make donations and things and ask what they can do to help. I know that the best thing is your love and prayers. We have had a blessing dress, blankets, hats, booties, and a sweater made by sweet people just for her that I cannot wait to show pictures of. We are so touched for the thoughtfulness and the love we feel. It is very difficult and humbling to be on this side of giving but we are so very grateful :)
 Thanks for all of your love and support. Love you all, Breanne

Monday, July 2, 2012

A little blue

The last couple days have been harder ones for me. I don't really know why and the boys are getting pretty used to seeing me randomly tear up. They are so funny, they just kinda look at me, ask me if I am crying because of Joy and tenderly try to pretend I am not crying. I try to always focus on the positive because I am constantly being reminded how many blessings are involved and how many blessings we have. I know I am not alone in this! I know I have my Savior who is always helping me see the good. I have family that are always doing things for me, I have the best boys in the world, and I have a husband who picks up my slack. I was talking to him last night about how I feel like I just can't give 100% on anything. He was so sweet telling me all of the things I was doing really well, and every single one of those he is picking up my slack. He is always cleaning, doing dishes and putting the kids to bed. He even took pity on my poor plants that were near death. The last two Saturdays have been honey do's and he just keeps asking what he can do to help me. I know he would do anything for me and I am so grateful for that. I know we couldn't do this without all the prayers and love we feel from all our friends and family.
By the way I finally was able to go pick out all of the material for Joy's blankets and burial dress. My grandma and mom came with me, helped me pick everything out and bought everything! It was a great morning and I am so excited to start working on her dress.
I don't know what I would do if we had to handle the financial burden on our own. We have had many people that work with Justin give us money to help buy the burial plots so we can also buy one by Joys. They have also given money so that Justin can make her casket which will be so beautiful. We have so many great friends and are so blessed. I know the Lord is truly watching out for us. I feel like this is pretty random but it felt good to write it down.