My experience of tragedy, trials, and triumphs!
If you're new here start by reading the "My name is Julie" post first!!!

Popular Posts

Friday, January 31, 2014

Who's the Boss? Our experience in talking back to OCD...

I had seen signs of OCD in a couple of my kids very early on.  Nothing to extreme, but little hints of it were there.  They didn't like the "silky" way their hands felt after eating greasy chips, or wouldn't pick things up with their hands if they were dirty.  The first time it really knocked the wind out of me was when Josh was 4 years old.  He came running inside to tell me that he had made a picture with chalk for me outside on the sidewalk.  I stepped out my front door to see the picture my son was so proud to show me, but found a heartbreaking reality instead.  I saw a picture drawn with two stick figures holding hands, a Mom and her son.  But that wasn't had a big circle around it and then a big "X" to cross it out.  As I walked down the 30 foot walkway in front of our home I saw the exact same picture drawn over and over, all with a big circle around them and then crossed out. At the end of the sidewalk remained a picture exactly the same as all the others, but it wasn't crossed out.  Josh said to me in his 4 yr old voice, "The other pictures weren't good enough for you, but now there's no more sidewalk, so I like this one."  I took him in my arms and told him how much I loved all the pictures he drew for me, and quickly wiped away my tears before he could see them.   Josh was 3 when his Dad died and he had really struggled with it.  We had been working on therapy, but this was the first moment that I realized we may have a serious problem.

When Josh was in Second grade however, I became a big fan of OCD.  My therapist had told me that a person with OCD will always struggle with different OCD tendencies so if it surfaced in a healthy behavior it was ok to just go with it, unless it became detrimental.  If it is a positive thing for the child then don't worry too much about fixing it.  Well,  Josh became obsessed with a reading challenge at school that the principal gave.  He wanted every child to read 100 hours during the school year.  When Josh started 2nd grade he was a little below grade level.  His OCD took hold of this challenge and I let it go.  He began reading an hour or more every night.  He would ask me to pause his minutes if he needed a bathroom break or a drink.  He was determined to be the first kid in school to finish.  He ended up being the second kid in school to finish and was done with his 100 hours by November.  He told Grandpa one weekend that he couldn't come visit because he needed to read 7 hours over the weekend.  My Dad called and said he was concerned I was expecting too much out of him and that no 2nd grader should have to read that much over a weekend.  I explained that he had the next 6 months to read those 7 hours and it was Josh's deadline...not mine.  After he finished the challenge the next time they tested his reading level he was at a 6th grade reading level.  He is in 8th grade now and continues to test off the charts in reading.  It took him from the bottom of the class to the top.  Thanks to his hard work...and OCD.

Josh won a writing contest a few months after the reading challenge!

The last year however, OCD became my worst enemy.  Jordy, my autistic son struggles with a lot of things.  One of them being severe anxiety and OCD.  He has had a fear since he could talk that the police would come and take him.  He would panic when he heard sirens that they must be coming for him.  He would be fearful that he was breaking laws constantly.  It was something we had dealt with his entire life, so I got very used to telling him that, "Police never take children.  They are here to help us and protect us and if he was lost they would help him find me, but never take him away from me."  It was routine conversation.  Well, in November of 2012 there was an increase in his asking again.  He also started repetitively praying and repenting throughout the day.  It became frequent enough I went in to the school to ask the teacher if he was praying at school as well.  She responded with "To be perfectly honest, I haven't noticed we have had so many problems with "Johnny" (not his real name) this week it has taken all of my focus."  I asked what kind of problems and her response felt like I had been kicked in the stomach.  "Well, he has been so out of control that we have had to have the police come and remove him from the classroom twice.  He was attacking other children and the staff as well."  I couldn't believe it.  During that week I probably told Jordy 100 times that, "Police never take children".  He couldn't communicate what he had been seeing at school that week.  So the trust that Jordy once had in me was gone.  *Police DO take children, they actually come into your classroom and take you away and put handcuffs on you!  So Mom is either lying to me or she is just dumb!* 

We tried to recover the situation, by explaining why they needed to take Johnny, and that they didn't take him to jail.  They just took him to help him calm down and he is still with his family.  Part of the problem was Jordy identified with Johnny.  They went to speech and resource together and had some similar problems.  *What if I am bad like Johnny?*  Johnny was hitting and kicking the women staff members.  *What if I hit or kick a girl, I could go to jail, and then I won't live with Heavenly Father.* 

By February OCD had won.  Jordy's usual techniques of asking me if he was going to jail would no longer soothe his fear of police.  He began asking EVERY girl, or women he saw, "Did I kick you? Did I hit you?" even if he wasn't even near them.  He asked strangers in the grocery store, every visitor that came to our house, everyone at church, every little girl at school, every teacher and staff member at school.  He prayed immediately after asking his questions.  So that is how we lived until we could get into therapy.  He asked his questions, and then prayed,  ALL DAY long, EVERYDAY.

In the first few weeks while waiting I tried to use some of the techniques they use in helping autism behaviors, and that only made it worse.  He began asking if he was holding up his middle finger.  He stopped using his hands and kept them straight and stiff to be sure that he didn't hold up his middle finger.  He added that to his routine questions, "Did I hit you, did I kick you, did I hold up my middle finger, did I say a bad word?"  Those were the only words he used for 3 months.  When he was in the middle of a baseball game he would take his hat off while on second base in between plays and pray.  He would step out of the batter box in between pitches, take off his helmet and pray.  He paced back and forth during class mumbling prayers to himself and asking the other kids his repeated questions.  We took a 5 hour road trip during this time and Jordy literally asked his questions every minute.  The longest time he sat silently was maybe 30 seconds, and when he took those small breaks it was to repent...just in case.  When Jordy was in a situation that he couldn't ask his questions he would have to pray constantly.  He would sit during an hour long church meeting and pray.  He would finish a prayer look up and look around and then he would pray again, the entire service.  He struggled to eat and drink because he didn't want to put up his middle finger.  I remember him trying to get a drink from his cup using his wrists to pick it up and bring it to his mouth.  He didn't want to wave hello to people or write in class because of the fear that his middle finger would flip someone off.  It was completely debilitating in all aspects of his life. It CONSUMED him.

High functioning Autism can be referred to as an "invisible disability" at times.  People don't know right away that there is something affecting your child.  This has it's pro's and con's.  Well, Jordy's invisible disability was no longer invisible.  Everyone that came in contact knew immediately that he was a little boy that was struggling.  The only word I could use to describe what he was going through was SUFFERING.  I can't count the amount of tears I shed over watching him suffer.  He needed therapy, and help fast, and yet it took weeks, even a few months to get into a therapist that could help him start to heal.
This is how he held his hands all the time:(
When you start therapy for OCD this bad it is a very slow and delicate process.  If you push too hard, too fast it can back fire and make the OCD much worse.  With the correct therapy techniques we started making some progress.  Our therapist was awesome, she helped Jordy realize that it was "OCD bossing him around" and he didn't have to listen to it.  We came up with tools for him to use and key words I could say in response to his unending questions.  We made visuals for him to tape to his desk at school so that his aide, or the kids around him could remind him to use his tools when he starting asking them.  It was a group effort for all our family, friends, church members, and the staff at the school.  I will never forget the day that Jordy talked with our Bishop at church.  Jordy came out of his office with a huge smile on his face.  "Look Mom, he gave me a shiny rock and it says REMEMBER on it.  The Bishop told me that every time I think I need to repent he said I can remember that Bishop Peterson said I don't have to repent all the time."  I started bawling and couldn't even get the words out to thank him properly.  When I told our therapist the story, she started to cry as well.

Watching Jordy suffer with OCD was one of the hardest things I have ever had to deal with as a Mother.  It broke my heart everyday.  I remember the first time we drove home from baseball practice and he went the entire 5 minutes without asking me his questions.  Even better was that he told me about all the things they did in practice that day.  I remember thinking, 'this is the first conversation I have had with him in 3 months'.  It felt like a miracle.  We spent several months doing intense therapy for him.  They even considered putting him in a day program for an option, because he was struggling so much at school.  The school Psychologist said it was the worst case of OCD he had ever seen a child deal with.  Therapy started working and Jordy slowly began to boss back OCD.  We went from 2 therapy appointments a week down to one, and eventually every other week.  It was a process that took us over a year.  As we were driving to his last therapy appointment a couple weeks ago he said to me, "Mom, it just feels so good that I don't feel like I have to repent all the time anymore".  Jordy's therapist gave him a certificate to celebrate his hard work at taking control of his life back.  She is also ready for that call if we need her again.

Who's the Boss?  Jordy is the Boss!!!

OCD is so debilitating at times, and yet can be a powerful tool in people's lives as well.  I am grateful that I have more awareness of when OCD is trying to "boss" my kids around and more tools to help them boss it back!

*These are just my experiences, and I know that everyone has a different view of things.  I am not a therapist, just a Mom that is doing her best to navigate through my children's struggles and triumphs.

**Follow me on my Facebook page!

Friday, January 10, 2014

My name is Julie...

My name is Julie and I married my first true love.

When I was 18 years old, in January 1996, I went on a first date with Jake Jorgensen, the man I would marry, and the love of my life.  We fell in love instantly and had a great life.  In the first 7 years of our marriage we experienced many ups and downs.  We had 3 young boys who were all sweet and amazing.  We moved several times, but built our dream house in 2002.  Jake ran a cattle ranch that he loved, and I lived my dream as a stay at home mom.  Jake worked as a mechanic in a coal mine in addition to the ranch to make that possible.  We also experienced a devastating miscarriage, the loss of Jake’s job a few different times, and a health scare with our 4 year old that had him in the hospital for over a week with Kawasaki’s disease.  

We truly loved each other and made it through all the ups and downs together.

In January 2004, I found myself over-scheduled and stressed- never saying no to anyone or anything.  Jake was our wards Young Mens President and I was the Primary President (church leadership).  Additionally, I was the PTA Vice-president, volunteering at the school to read with the kids, room mother, teaching a tumbling class for little boys, and oh yeah, being a wife and mother.  

On Thursday January 22, I called my Mom to complain about all my problems and at the end of the conversation she said, “I hope your weekend gets better.”  My response, “I don’t know how it could get worse!”.  

That night my husband left for work at 9:00 at night.  He worked graveyards at a coal mine in Price, Ut.  As he walked out the door, I called him back to give me a kiss goodbye.  We shared a passionate kiss in the middle of the stair case and I gave him my usual goodbye, “I love you, have a good night, and make sure you come home to me in the morning :).”

Around midnight there was a knock on my door.  

My best friend, my former bishop (released the week before), and our new bishop and his wife were standing on my porch.  I thought for a second they were coming to get me to go help someone in our ward.  They asked if they could come in...(no this isn’t happening to me, don’t let them in).  I must have let them in though, and they made me sit down. (Don’t say it, don’t listen, make them leave)  I hear my old Bishop say, “There’s been an accident at the mine and... (this isn’t happening, this is not my life!!!)  and Jake didn’t make it”Now my thoughts became screams as I sobbed uncontrollably.  “No!  Where is he?  Take me to him right now!  There has to be a chance!  He has to be ok!  I know he is alive!  Just take me to him and he’ll be alive.  PLEASE PLEASE take me to him!”  They didn’t have any details or know where he was... they just knew he was dead.  

My name is Julie and I am a widow.

I spent the night sobbing, waiting for my family to make the 2 hour drive to get to me. Then spent the next day sitting my 6, 3, and 1 year old sons on my lap, telling them their daddy died, and that he was never coming home.  I then went and picked out a casket for my amazing, adoring husband.  And OH YEAH, I took the pregnancy test I had bought the day before with such hope and excitement in my heart.

The test was POSITIVE. 

In the midst of the most horrible event I could imagine, I had a MIRACLE. This baby was a BLESSING. It was a piece of my sweet Jake still living inside of me. That little baby saved me.

There I was... 26 years old, a pregnant widow, and a single mom of soon-to-be 4 sons. 

No words can describe the feelings of a grieving wife whose husband was torn from her in a tragic accident.  I envied every story I heard of someone getting terminal cancer.  I imagined my car crashing into cement walls.  I wanted Jake.  I wanted to die so that I would be with him again and feel like I was alive.  The truth is when Jake died, so did I.  I felt like everything good and happy about me was drained out, and I was filled up with pain.  Everything was ripped from me, except my kids.  Our life, our dreams, and our plans no longer mattered, without him they were dead too.  How could I live without him?  How could I make plans, or have dreams ever again?  I remember sitting in a room filled with people and feeling completely alone.  The thought “Jake is dead, how is he dead, how is this my life?  This is NOT my life!” ran through my head 95% of the time. Grief is something that is dark and horrible and eventually can be sweet and peaceful.

Having my 3 boys, as well as knowing that I was pregnant, kept me from doing anything crazy.  But, my family never left me alone either.  They were there for me from the night he died and still, to this day, remain close to help and serve me.  They were a blessing and a huge reason I was able to go on.  We decided that I would buy my parents house and they would build next door to us so they could help me raise the boys.  

I had made the first plan in my future without Jake. 

Eight months after Jake died, I gave birth to my sweet Jacob Jr.

He began the healing in my heart.  He was an angel from the start and has remained one ever since.  He just turned 8 years old.  He is so much like his Daddy it is crazy.  I’m thankful everyday to my Heavenly Father for giving him to me.  He is my miracle!

To be honest the first 2 years after Jake died are a blur.  It was so hard and exhausting.  But there were so many tender mercies along the way as well.  I began making a new life for me and the kids.  We started grief therapy, and new traditions that would ensure we would always remember Jake.  Slowly, we began to accept that he wasn’t coming back.  This was our new reality.

When Jake first died, I was offended by anyone even suggesting I remarry.  I remember my mom suggesting that I start dating after it had been a year.  My response, “Should I ask the guy to bring me home in the middle of the date to breast feed the baby (3 months old) or should I just take him along and breast feed him during dinner?”.  That gave us a little bit of a laugh.  After a year or so though, I started realizing that I was so young and it would be a very long, lonely life if I stayed single.

I started dating after it had been about 2 years.  It was awful, scary, hilarious and sometimes even fun.  In April 2006 a man named Curtis asked me out and with a little divine intervention I eventually said yes.  It was hard at first but, within a short time we fell in love and I KNEW I was supposed to marry him. He had 4 sons as well, all the same ages as my kids.  I was thrilled to feel happiness again.  I was going to make plans and have dreams again!  Curtis was great about accepting Jake’s presence in our home, our lives, and my heart.  This made it easier for me to allow myself to fall in love with him.

It was amazing and romantic and perfect... until we got married and then it was all of those things, and also very, very hard.  Second marriages have so many problems that first marriages don’t have (and first marriages have plenty of problems).  I’m still not sure why I thought starting a marriage with 8 boys under 8 would be easy? ;)

It took time for me to deal with feelings of betrayal once I remarried.  I struggled feeling like I was betraying Jake, and in time I began feeling like I was betraying Curtis, as well.  Being in love with 2 men is a strange thing.  I didn’t want to hurt either one of them.  Gradually however, with the love and understanding of Curtis, and the peaceful feelings that I get from Jake, I have been able to let that go.  I can be deeply in love with both of them and that is OK.  I even feel the love that Curtis and Jake have for each other.  It might not be a typical family unit, but it’s mine and I love it.

My name is Julie and I am in love with 2 men.

Curtis and I have had years of ups and downs.  Times that I was sure I was going to leave him and times that I have never felt happier, but we work hard at our marriage and are thriving and happy... (most of the time:).  

In the first months after Jake died I read a book about grief.  In it was a line that I keep close to my heart and have tried to live by.  “You can’t choose your trials in life, but you can choose how you deal with them.  You can choose to become better or bitter.”  I have tried hard to become better.  My kids are amazing people because of what they have been through.  I feel blessed to have two men who love me and accept each other being in my heart.  I feel happiness and joy everyday.  I think of Jake everyday.  He stays in my heart and we talk about him regularly.  Everyday that I was married to Jake I prayed for his safety.  I had faith and knew that God would protect him.  At the same time, everyday I also prayed to be able to accept God’s will in my life.  I also have faith in this.  I used to think that if I had faith God would protect me from anything bad happening to me.  Now I know that if I have faith God will help me survive anything.  

People say that “time heals all wounds”.  I beg to differ.  Time doesn’t heal, if anything it makes it worse.  It’s been longer since I have seen Jake, and heard his voice.  Longer since I’ve felt the love and strength in his embrace.  But what time does, is helps us learn how to deal with it better and how to cope with our new reality.  Time give us the chance to grow into the person we were meant to be.  I said before that grief can become sweet and peaceful, and that is because of time.  To think of Jake, see pictures of him, and take time to remember him brings a sweet, peaceful feeling.

My name is Julie and I am choosing to become better.

In 2008 Curtis and I had our first child together.  I was so excited to find out what it was, obviously hoping for a girl to add to our family of 8 boys.  I have to admit that I was devastated to find out it was another boy!  It took several weeks to accept this reality.  Cameron was born in July.  He was so sweet and he had my heart from the minute I saw him.  I wouldn’t have traded him for any girl in the world.  I knew he was meant to be my son.  He helped bond our blended family into a family.  Everyone adored him.  He brought so much happiness and love to our home.

Things were looking up.  Curtis and I moved into a new home that fit our extremely large family.  Curtis was blessed to be very successful in his career so we had more than enough for our needs.  The kids were all doing great.  Cameron was a little delayed on a few things, but overall we were doing really well.  I was sure that all my trials were in the past.  We still deal with the loss of Jake daily and he remains a huge presence in our house.  But, surely my life had been so hard that I wouldn’t have anymore trials.  At least, no more big lifelong trials.  Right!?!

 In the fall of 2009 my 3rd son Jordy was really struggling to learn in school.  He had been very delayed in his toddler years but because he was only 1 when his Dad died they felt that explained his delays.  I felt like he eventually caught up by preschool.  He had a quirky personality, but that was just what made him Jordy.  When he was in first grade things started spiraling downward fast.  I was reading everything I could find and came across, The Out-Of-Sync Child.  This was a game changer for us.  It took almost 9 months to go through all the diagnosing, Doctor appointments and therapist to find out he was PDD-NOS (mildly autistic) with severe Sensory Processing Disorder, and had learning disabilities.

My name is Julie and I am a special needs Mom.

I was devastated and couldn’t believe that I was going through yet another trial.  It took several months to come to grips with my anger over it. I felt betrayed by God somehow.  Like we had an agreement that I would endure my trial with the understanding that he would prevent anything else bad from happening.  I battled depression (again), and gained weight from all the stress.  But in time, with a lot of prayer, God helped heal my heart.  Instead of feeling picked on I decided to focus on helping my son.  I found my strong personality again and became a mom with a cause.  Sometimes, moms of Autistic kids have to fight harder than other disabilities.  Maybe we are bad parents, or our kids are just bad kids that don’t listen and won’t follow directions.  There is no medical “proof” that our kids have a disability.  It’s just some Doctors opinion.  We have to fight for our kids in the school system, the medical world, in our neighborhoods, in our families, in every public place that we take our kids, and even at times in our homes with the other siblings.  Watching my son struggle with PDD is heart breaking at times and yet, he is so funny and great to be around.  He is happy almost all the time, and tries so hard.  My priorities changed from making sure I made it to the gym every morning, to making sure Jordy had his occupational therapy, speech therapy, behavior training, and tutoring lined up and taken care of each day.  I tried hard to “fix” him.  I have learned in the past couple years that instead of trying to fix him, I need to help him.  Help him reach his highest potential no matter what that is.  Help him deal with his sensory issues, by fixing his environment rather than him.  Helping his anxiety with coping techniques.  Helping him find the best ways he learns and convincing his teachers to accommodate the systems we find.  As time has gone by somethings have improved a little and some have gotten much worse.  We take each day as it comes and continue to navigate through all his struggles.  Little did I know that this experience was preparing me for even more.

My name is Julie and I will fight for my kids!

 Cameron was easy from the beginning.  I teased my older kids that he was happy just to be along for the ride.  Sitting in the car seat silently accepting his fate as a passenger to their lives of football, baseball, and everything else they were involved in.  It was kind of a joke until I realized that my soon to be 2 year old sweet baby boy that never cried or caused a problem, also never really made a sound.  He had several delays along the way, but when I asked the Doctor about them I was always brushed off as the worried mom (whose husband died so she’s too paranoid).  Being told, “He is the youngest of 9 kids, he will catch up.” and “You need to stop worrying so much, he is fine, happy and healthy.  He will smile, sit, crawl, walk (the list goes on) in his own time.”  

Finally when Cameron turned 2, with almost no words or sounds they started early intervention.  With a normal hearing test we began speech therapy.  During that time I found out that I was (quite surprisingly) pregnant again.  God really knows me, and knows to give me babies when things are going to get ugly;).  I was thrilled and hoped and prayed for a daughter.  Living with 9 sons was fun...but come on, throw a girl a bone and give me a baby girl! 

 Cameron was having speech therapy weekly and after 4 months had made no progress.  They diagnosed him with speech apraxia (the inability to make your mouth say what your thinking) which lead to an MRI four days before Christmas in 2010.  The Doctor called that day with more words I never wanted to hear. “The MRI was AB-normal.”  I was crushed.  Cameron was diagnosed in the following weeks with Periventricular Nodular Heterotopia, (PVNH).  I told the Neuro he would need to write that down.  It is a brain abnormality where some of the grey brain matter doesn’t migrate out during the development process.  It interrupts good brain waves being sent out and almost always sends out misfires and causes an almost untreatable form of epilepsy. They said he may never speak and to teach him sign language in hopes his brain would make new connections to his speech center.  He would need intense speech therapy and an EEG to test for seizures.  The EEG was normal, so we continued in his speech therapy, upping it to 2 times a week. 

On January 19, 2011 the 15 year anniversary of Jake and I’s first date I found out I was pregnant with a GIRL!!  The timing was divine.  It brought a spark of happiness and excitement in a time that I was so overwhelmed and heart broken about Cameron. Finally after 14 years of longing for a daughter, my prayer was answered.

 Even with this joyous news, my focus stayed on Cam.  Luckily I learned sign language in high school so I began teaching Cam.  He loved it and in a short time was signing so many words.  I eventually taught him to pray in sign language.  I challenge anyone to find something as cute as a 2 yr old signing a prayer!  After months of signing and therapy he slowly began to say a few words and finally put 2 words together, “ball in”.  With that little phrase we worked on for months, something clicked, and by the time he was 3 he was putting 3 and 4 words together.  Hearing my little guy say “love you mama” brought unimaginable joy to me.

 In July, Curtis and I welcomed to our family our baby girl.  Decorating her nursery, and buying her clothes brought so much happiness in a tough time.  But, holding her in my arms was priceless.  My heart was so full, and our family was complete.

My name is Julie and I FINALLY have a daughter!!!

I was thrilled with Cameron’s progress but something still wasn’t right.  Cameron seemed sick all the time.  He was tired and sluggish.  He would sleep for hours and hours during the day and 12 hours at night.  He had rashes all the time all over his body.  He was having issues that didn’t add up to being just PVNH.  He started declining in Sept. of 2011 to the point of me demanding an appt. with a Cardiologist.  I can’t explain it, but I just knew something was wrong and I had to fix it fast!  They found nothing.  The feeling only got worse.  After years of being ignored by my pediatrician I finally got a new Doctor in November of 2011.  She researched PVNH and decided we should be scheduled with a genetic specialist.  Usually it takes months to be seen but we were a “high priority case” because we already had our first diagnosis.  They scheduled an appt. just 3 weeks away.  Unfortunately, the next week Curtis was informed that his great successful job had an expiration date.  He had about a year left before he would need to find another job.  This was a shock and quite devastating, but we were so grateful for the year we would have so that our insurance would see us through solving Cam’s puzzle.

We went to our appointment with genetics.  The doctor ordered a special blood test and a week later, this time 3 days before Christmas we were told “Cameron has a genetic disorder called 22q11.2 deletion syndrome” (also known as DiGeorge Syndrome).  This is a syndrome where part of the 22nd chromosome is deleted.  It is what caused the PVNH and explained all the other issues he was having.  In the next several weeks we learned that Cameron has 3 minor heart defects, 1 being potentially fatal that we will monitor his entire life.  He was born with only one kidney, that is smaller than the Doctor would like and has a couple issues, that will also be monitored.  Low immunity, over-all low tone, chronic fatigue, chronic rashes, and possible learning disorders.  PVNH usually causes dyslexia and 22q causes issues with numbers and problem solving, so he is taking a hit from both sides.  There is a 90% chance he will eventually develop a seizure disorder.  His most recent EEG came back normal again though:).  Cam had to have a sleep study done and they found he had sleep apnea.  We removed his adenoids and tonsils to hopefully help his chronic fatigue.  The surgery went well, but I’m sad to say the fatigue remains a big issue for him.  It is likely that he will continue to have new issues come up through out his life.

The good news?  Cam has beat the odds in many ways and his speech continues to improve.  The mortality rate for 22q kids can be high in the first year, depending on symptoms.  Also a lot of 22q and PVNH pregnancies result in miscarriage.  He is the happiest, sweetest little boy I know.  I can’t get enough of him.  I am grateful everyday that he is alive.  When Jake died I remember envying people that had trials of illness.  That sounds crazy, but death is so final.  There is no room for hope, prayer, miracles, and doing everything in your power to fix it.  This gives me perspective, knowing full well that my Cam could have died.  He could have spent his entire life in the NICU until he finally died.  He didn’t, he is alive, he is happy, sweet, and playful.  He is a miracle, and I get to have hope, and do everything in my power to fix him.  

My name is Julie and I see the miracles in my life.

 Most people would say having two special needs kids is a really hard trial.  Well, even just having one child with special needs is.  This is a true statement.  However, as a Mom of two amazing special needs kids, I realize that it’s not just MY trial.  Their special needs are their trial.  They are two of my most cherished blessings.  I have the honor of raising, loving, and helping them through all of the challenges they will have to face in their life.  They are strong and will reach their full potential, whatever that may be.  It won’t be easy for them or for me, but we will get through all of it together. Watching Cam go through several medical tests over and over kills me.  He will have a lifetime of Dr. visits and stops at the hospital. It breaks my heart for him.  I will go through all of it though, if I get to be the one he snuggles up to and kisses everyday.

I started realizing I could break under the pressure of being a widow, in a second marriage with 10 kids, not knowing what our employment situation will be or how we will get a new insurance to cover Cam or Jordy, and having two kids with special needs, on top of every other “normal” problem that most of us face everyday.  OR, I could look for every blessing, every miracle, and every ounce of help I receive from God and my loved ones.  Sometimes I have to really search and sometimes it is abundantly clear, but I can find blessings in every single day.  I focus on what I can do to improve our situation and do it.  I try not to beat myself up for not being perfect at everything.  I do the best I can and accept that as good enough.  I am thankful for all the amazing things I have in my life.  I have "typical" kids that are amazing and helpful and lift my burden everyday.  Curtis and I have grown very close as we have faced each new challenge. I may have had harder trials than most, but I could argue that I may have had more miracles than most, as well.  I love my life, I try to become better everyday, I look for the positive and don’t focus on the negative, and I choose to feel happiness everyday.  I’m not perfect in this and have plenty of room to improve.  I have times I feel down, or even days that I feel down.  The important thing is that I don’t let myself have weeks or months that I feel down.  

People often ask me how I handle so many trials.  I usually respond with something like, “I didn’t know I had any other option”.  The truth is though, the only way I can handle any of it is through the help and love of my Savior and his atoning sacrifice.  I rely heavily on the words of my beloved church leader Thomas S. Monson, “Remember, whom the Lord calls, the Lord qualifies.”  My life is a testimony of that statement.

My name is Julie and I love my crazy, tragic, stressful, difficult, wonderful life. 

Prompted by many of your messages I started a facebook page.  You can follow me or send me a private message at:
My name is Julie and I love my crazy, tragic, wonderful life.

My name is Julie post was originally posted on a blog for a My name is... series about women overcoming difficult challenges. The blog is called My Name is Jacy you can find other inspiring stories on this blog.

When I get stressed...I bake...check out my cakes!