My experience of tragedy, trials, and triumphs!
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Saturday, September 20, 2014

Our Sensory Processing Sleep Solutions...

I have two sons with special needs.  Jordy is 12 and has autism, anxiety, and OCD as well as severe Sensory Processing Disorder.  Cam is 6 years old and has 22q11.2 Deletion Syndrome, PVNH, EDS, and several medical problems related to all 3 of those diagnosis'.
One of the biggest issues parents of special needs children deal with is sleeping.  A lot of kids continue to keep their parents up all night the same as an infant does for years.  I am fortunate in that my kids don't usually keep me up all night, but we have our own set of problems.  This summer we had an experience with Cam that made me realize how dangerous sleep can be.

A lot of kids with special needs have sensory issues.  When they struggle with several it is diagnosed as Sensory Processing Disorder.  Basically all the things that affect our senses is processed differently for them.  Some are seekers, and some are avoiders.  Jordy has mostly seeking tendencies, but also has a few avoiding issues as well.  He craves intense foods and flavors because of the lack of input he receives through his mouth.  He will often chew on things when he is anxious.  His favorite food is onions...and has been since he was about 1 year old.  He has been known to add onions to Lucky Charms cereal! It was one of his first signs that something was a little different than the average kid.

Cam is more of an avoider.  Loud noises and sounds really bother him and he will cry until the sounds are gone.  Going to sporting events, plays, amusement parks or even movies are literally painful for him.  I was able to buy some headphones for him so he is able to enjoy life.  It has made a HUGE difference.  I remember the first time he used ear plugs.

I started to avoid taking Cam to places I knew would be too loud for him.  It had been about a year since I had taken him somewhere that was loud so I kind of forgot what a problem it is.  We went to a BYU football game and as soon as we got there I regretted it.  He was SO excited to go, but the stadium was so overwhelming.  The roar of the crowd and the unexpected canons going off put him over the edge.  He buried his head in my lap covering his ears and cried.  I felt awful.  How could I forget that he wouldn't be able to tolerate the sound?!  It was all I could do to not start crying with him.  I convinced him to go into the bathroom with me so we could regroup for a minute.  I spent some time calming him down and telling him how sorry I was that I forgot it would be too loud for him.  I told him that we could walk around to all the stores in the stadium and look for some earplugs.  As I was having this conversation a nice lady was listening in.  She offered me a pack of earplugs she kept in her purse.  She saved the day for me and for Cam.  We got them put in and headed out to find our seats.  When we got out there and the crowd started going crazy Cam looked over at me and got the biggest smile on his face.  He said, "It doesn't hurt!".  He stood up the rest of the game cheering, singing, and laughing the entire time.  It was adorable.  The first thing I did the next day was buy some headphones.  His life is so much more fun!

The list of both of the boys sensory issues is long!  It could (and should) fill a separate blogpost!

Sensory issues can impact a person's life more than any of us realize until we are the ones dealing with it.  The book, The Out-of-Sync Child is really great for figuring out whether or not your child is dealing with sensory issues.  It was a game changer for us and was what really helped us get on the right path for getting Jordy diagnosed with Autism.  As a parent that deals with sensory kids you start to look for anything you can that will help you child function in a world that is too overwhelming.  When Jordy was chewing everything to pieces in school I offered to send bubble gum with him.  I wondered how the teacher would react, because bubble gum is against the rules.  "YES! Send bubble gum!" was her reply.  When Jordy had the urge to chew on things he chewed gum instead.  It worked!  A simple solution to a huge problem.

Sensory issues can often cause problems for sleeping as well.  Cam and Jordy both tend to cover their entire bodies when they sleep including their heads.  I will often go and uncover both of them during the night, but they will immediately cover their heads again.  I haven't worried too much about it assuming they are both filling some sensory need that they have.  This summer however my perspective changed.

I was volunteering at a youth group camp for our church.  My mom had agreed to keep my kids for me while I was gone.  The kids are always excited about having a sleepover at Grandma's house.  Jordy was on the couch and Jacob and Cam were sleeping on the floor with some big blankets that Grandma laid out for them.  In the middle of the night my mom woke up to a strange noise.  She described it as one of the scariest things she had ever heard.  She wasn't sure if it was an animal outside, she couldn't imagine what could be making such an awful noise.  She went to check on the kids just in case.  What she found was even scarier than the noise.  Cam had wrapped himself tightly in the big blankets.  He had actually mummified himself.  He was not getting any oxygen and the sound she was hearing was his body retching for air.  The scariest thing...it didn't wake him up.  He is a deep sleeper and suffers from sleep apnea.  The lack of oxygen didn't wake him up, but did cause his body to react as he tried to breathe.  My mom rushed to untangle him from the blankets that were wrapped so tightly around his face and body.  Cam never woke up through the entire ordeal.  When I called my mom the next day to thank her for watching the kids she told me the story.  It was so scary to think about what might have happened if my mom hadn't heard him.  I was just sick to my stomach trying to come up with ideas that would literally save Cam's life during the night. I immediately began to research blankets for special needs kids.  There was not a lot of options or help.  I came up with the idea of crocheting a blanket with a giant hook and a double crochet knot so there would be big holes in it for him to breathe through.  We headed to the fabric store to pick out a soft yarn that was a color he liked (orange...I hate orange) and I began making the blanket.  I sat next to the pool in 100 degree weather crocheting my life saving "blankie".  It worked as far as covering his head and allowing him to still breathe.  There was a small problem though.  Cam didn't stay warm under it and he started going around the house finding other blankets to cover up with at night.

A few months before Cam had his sleeping scare I had been looking for really cute bedding for my 3 year old little girls room.  I came across a new company called Beddy's that was doing a kick starter campaign for their new zipper bedding designed for kids to be able to make their "bed with ease"--Beddy's.  It was an idea stemming from a mom not being able to make her kids bunk beds (we have this issue as well, it's just at the bottom of my issue list;).  I had ordered one of the comforters for my daughters bed because it was darling and just what I was looking for.  I had to wait awhile for the order to come in though since it was a kick starter campaign.  As I was trying to figure out what to do for Cam I remembered the zipper bedding.  I looked through the options and figured it was worth a shot.  Bedding that he would not be able to wrap around him because it is literally zipped to the sheets...it was the best option I had seen.  The bedding was not made for kids with special needs.  It is a great idea, really functional, and super cute.  That was what the company was aiming for.  What they ended up with though for me and my family is a product that offers me a good nights rest knowing that Cam is SAFE and WARM in his bed sleeping.  We have had the bedding for almost 2 weeks now and it is a huge hit!  I also got one for Jordy hoping that it would also help his sensory sleep issues.  I have a weighted blanket for Jordy, but it doesn't cover his entire body so his feet are usually left uncovered and cold.  They both LOVE their new Beddy's.  They also can both make their own beds now, which is awesome and has helped build up their self-esteem.  We have already had one bed wetting experience and also Cam woke up with blood coming out of his ear one morning and they have washed great and the stains came out easily!  They are super soft and comfy and my other kids were asking for their own Beddy's the next day.  I'm not sure how many other families with sensory kids would benefit from this bedding...but it has really helped us!

My son and the son of this mom inventor (Betsy) had played ball for a couple weeks together and we had become Facebook friends.  This is how I found the kick starter campaign in the first place.  I gave her a call to tell her how amazing it has been for us and she said she had many other customers with special needs kids emailing her with similar stories.  I have never endorsed a product through my blog, and I have not received any money from the owner's of Beddy's.  I just know that a few months ago I was stressing to the max imagining Cam suffocating in his sleep, and I looked for personal experiences through the internet to help me.  My hope is that if anyone is struggling with the same issues I was, they will see this and be able to rest a little easier!

I asked Betsy if she would mind if I talked about how awesome Beddy's is in a blogpost.  Her response was awesome and truly shows her character.  She has offered a special discount code to use at check out for all my readers!  It is a savings of $30 off the purchase price and they are donating $5 to the Dempster Family Fund which funds research for 22q11.2 DS every time the code is used!  I think this is awesome and I'm so grateful that she is offering it!  The code will be good for orders through the end of November 2014.

Use code Beddysfor22q at checkout.


Check out how soft that inside layer is!


 I never claimed to be a professional;)


 The perfect combination for our different sensory needs!!


 Jordy uses his weighted sensory blanket over his Beddy's now!


This bedding is just darling!

Thanks Betsy, Angie and Beddy's for making my nights and mornings a lot better!

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Friday, July 25, 2014

Celebrating 18 Years of Marriage, Even in Death...

18 years ago I married the man of my dreams.  I was 18 years old and living the life I had planned on since I was a little girl.  Jake and I were so in love.  We were married and sealed for time and all eternity in the Salt Lake LDS Temple.  It never occurred to me that I was too young to get married and start a family.  It felt natural and right.  I wanted to spend my entire life with Jake and wanted it to start as soon as possible.

After just 4 months of marriage I found out that we were expecting our first baby.  I was only 19 when Jax was born...almost 20.  Jake often teased me that I added to the teen pregnancy statistics for Utah.  We started our family quickly and added to it in the same manner.  I never thought twice about it.  We prayed continually about following God's will in our lives and tried hard to do what was right. We loved our kids and wanted a big family.

When Jake died after 7 1/2 years of marriage, and 2 weeks after the conception of our 4th baby it was clear.  We never felt like we were in a rush, but we were.  We had a lot of life to live in a very short time.  We had 8 years and 3 days from our first date to our last day on earth.  We needed to establish a loving marriage, and a stable foundation for our family.  We also needed to bring 4 souls into this world.  I know with all my heart that Jacob Jr. was the last thing Jake needed to accomplish in this life.  When that was done, so was he.  His mission on earth was fulfilled and he was called back home to start a new mission.  We were left here to pick up the pieces and figure out how to continue living with out the love of our lives.  This was not part of my plan...but it was the life we were meant to live.

At first thought it breaks my heart that we only celebrated 7 anniversaries together.  It makes me sad that our time together was so short.  After serious reflection I realize that we have celebrated 18 years together.  Our relationship has continued to grow.  My love for him has grown as I know his love for me has as well.  Jake has been in my heart now for half of my lifetime.  He has loved me and filled my soul with his love.  I have loved him, cared for him, grieved for him, remembered him, and thanked God for him everyday.  Our bodies may have only experienced 8 years together, but our minds, hearts, and souls have known each other for far longer than that.

I am so grateful for everyday I had with Jake.  The blessing of eternal life and eternal families is our greatest blessing.  I know Jake has watched over us for all these years and will continue to.  I am so grateful for that and for the knowledge the gospel of Jesus Christ gives us.

Today squeeze your spouse a little tighter and tell them how much you love them.  Appreciate the days you have together, because you never know if it might be the last.

Happy Anniversary Jake!  I will always love you!













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Wednesday, July 23, 2014

Beauty Revived...

A few months ago I was contacted by one of my very first girls that I served while in the Young Women's program for our church down in Castle Dale.  She has remained one of my favorites over the years.  Michelle was always bubbly and happy.  She would come over to my house for visits, and would even come by after she moved away to college.  Michelle's last visit in Castle Dale was the Sunday before Jake died.

When Michelle contacted me she told me about a new project she was starting.  I am Beauty Revived.  It is a website designed to highlight true beauty in girls and women.  Michelle is a photographer and had the brilliant idea of getting photographers to donate a session to worthy women.  Michelle would then highlight their stories and photo session on her website.  At this point she has over 30 photographers that have joined her and they have selected 50 women from Utah.  She hopes this will catch on with other states and many more photographers.  If you are a photographer that would like to participate you can find details here!

Michelle is an amazing person and I wasn't surprised at all when she told me of her grand plan.  I know she will continue to do marvelous things in her life.  Michelle was sweet enough to pick me as her Beauty Revived Model.  (This will be the only time my name is associated with model!!;)  Doing the photo shoot was fairly awkward for me, but I was really humbled by the opportunity.

So far there have been several women already featured.  Head over to Beauty Revived to check out all the different women!  There are some seriously awe-inspiring stories on there!  Also, Michelle's story was picked up by a local news station.  She was on KSL 5 last night at 6:30 and will be doing another spot today at 12:30.

Thanks Michelle for being a shining example to the world, by showing how much good there is to find all around us!  I am so proud of you for all you are doing, and you will always be one of my girls...no matter how old you are!



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Thursday, July 10, 2014

Finally a Princess...

For 15 years of motherhood I was STARVED for a baby girl.  Growing up we had a lot of girls and it gave me a false sense that everyone had girls.  I do remember sitting in a church meeting when I was a teenager and there was a woman that had just given birth to her 5th girl.  I had this thought, "At least it isn't 5 boys...that would be terrible!"

Well, having 5 or 9 boys isn't terrible at all.  But it does leaving a girly girl craving pink, dresses, bows, braids, dollies, and all things girly pretty bad!  I found out "Lil' Sis" was a girl on the 15 year anniversary of Jake and I's first date.  It was also just a couple weeks after we received Cam's first dx of PVNH.  Let me tell you...retail therapy is so much better when it's pink!

Having Lil' Sis in my life...well, in all of our lives has been an unexpected blessing and has brought all of us so much joy.  The boys are crazy about her and so is her daddy!  Having a daughter has completed our family.  I will Never get over it.  I still can't believe how blessed we are to have her.  Every time I buy necklaces, dresses, fingernail polish,  and girly bedding I am reminded how awesome it is that I get to do it.  Even more so, every time I do her hair, paint her nails, play princesses, sing songs, and play baby dolls I remember how blessed I am.

If I had a daughter first I don't think I would have appreciated the miracle of it.  I would have figured I would have had lots of girls.  I might have complained about doing her hair for 8:30 a.m. church or how she takes all my jewelry and gets into my shoes.  Praying for a girl for 15 years gives me great perspective, I love and appreciate every little thing she does!

Today my Lil' Sis is 3 years old.  She makes me so happy.  Here are some pictures over the last 3 years.  Making cakes is one of my therapies...so don't judge me on the appearance of being spoiled with elaborate cakes;)  To check out more of my cakes click here.

















1 yr old Cinderella Smash Cake and a Party Dress Cake!







2 yrs old Minnie Mouse Party!









3 years old princess party!




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*All the great professional pics came from my first friend (age 1) from Loulou Photography!




Tuesday, July 8, 2014

Celebrating 8 Years Together...

Eight years ago Curtis and I united our families together.

This is the first time I have celebrated an 8th anniversary.  Jake and I were married for 7 1/2 years when he was killed at work.  We had known each other for 8 years and 4 days.  Part of me wishes that I wasn't a "time keeper" always being aware of dates, lengths of time, and tracking and comparing the time that pertains to Jake's life and death.  I do accept it as part of who I am and how I grieve though.

As I have approached this 8 year milestone I knew that it was going to be a little bittersweet.  I talked with Curtis about it the other night.  I told him that I was dealing with some grief issues related to celebrating 8 years with him and I never got to do that with Jake.  I was worried his feelings may be hurt a little, but he responded so amazing.  He said, "It would be unfair to you and Jake if you did not have those feelings anymore.  It shows you still care."  Being able to voice my issues and feelings was very helpful to me.  I have been able to let that grief go, and today I am feeling just the sweet and none of the bitter.

Curtis and I have spent the last 8 years making our blended family into a family.  We will probably continue this process for several years to come.  One expert we have talked to said that it takes 22 years to fully blend a family.  Wow...that is a long time!  Some days it seems like we are sailing smoothly and other days it is still a struggle.  With all the ups and downs, the happiness we have found in our marriage and our family is more than I ever thought possible.  We have worked hard for our happiness, which makes it that much more appreciated.  (To read more about our path to happiness check out this post.)

I have had so many amazing experiences with Curtis...

We have raised 8 boys that had experienced grief related to death or divorce and helped them find paths to healing.  We have added two amazing little spirits to our family that have truly brought our family together and added more joy than we could have imagined.  We have grown as parents in patience and love and learned from the many mistakes we have made over the years.  Together we have learned how to love and parent special needs kids.  We were also blessed with our only little girl, she has added so much fun (and pink) to our family.

I have become a far better wife and person because of the lessons I have learned and the changes that I have needed to make being married to Curtis.  Watching Curtis change into more of the person that Heavenly Father intended him to be has been a blessing and a miracle.  I am so thankful that we have the light of the gospel in our lives and in our marriage.  The principle of forgiveness and trying to improve ourselves each day has strengthened our marriage.

We have traveled more than I thought I would in a lifetime in the last 8 years together.   The times we have spent alone together has been such a blessing and a very important lesson as well.  When you get married with 8 boys under 8 you HAVE to get alone time somehow.  We knew it would be important for us to go on getaways together to help build our relationship as husband and wife...without being mom and dad too.  Date nights are also vital to our relationship.  I know that when the kids move out and we find ourselves all alone that we will know each other, and love each other separate from being parents together.  In blended families the husband/wife relationship has to be the strongest bond to be able to stand the storms that come.

I am so thankful to a loving Heavenly Father that has a plan for me.  He has allowed me to find and love two amazing men in my life.  I have found happiness after I thought all hope was lost.  I have seen his goodness in giving us trials in marriage so that our happiness can be greater than we ever thought possible.

Curtis is a great husband and I love him dearly.  We have both grown so much, as we have grown into better people, we have grown closer together as a couple.  The support and love he has showed me with this blogging and speaking about our lives has been outstanding.  I truly feel so blessed to have him in my life.

Curtis,
Thanks for an amazing 8 years!  I love you so much.  Looking forward to a lifetime of memories and love with you.
Happy Anniversary!!!!






























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