Friday, October 12, 2012

My Name is JULIE (part 2)


*This is part 2 of Julie's story. If you missed the first one, read it here*

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.  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 4 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 is extremely high in the first year, and a lot of 22q 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 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 “normal” 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. 

























**Julie will be reading your comments, so you may comment directly to her! Remember the point of this series is to love, support and grow.

22 comments:

  1. Julie, in the photo of your family, you look like you are surrounded by love. Thanks for sharing your amazing story.

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  2. All I have to say is... Let god keep his blessings over you :)

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  3. All I can say is, wow! Thank you for sharing your story.

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  4. Julie, your story is amazing. Heartbreaking and heartwarming at the same time! Your positive attitude and refusal to let tough challenges in life get you down is such an inspiration. I truly believe that God doesn't give us more than we can handle - and He must know just how strong you are, because you've had to deal with a lot! Your sons are lucky to have you, as is your husband. Your big family looks like so much fun:) And I'm sure your little girl is just spoiled rotten by all her big brothers! Thanks for sharing your story.

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  5. You are very inspiring! I am especially impressed by your gratitude and positive attitude. You have a great perspective and have chosen to be there to do what needs to be done for your family instead of being consumed by your hardships. Your family is blessed to have you for a mom!

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  6. I've known Julie since before any of these major trials happened to her and she was inspiring then and is even more inspiring now. Thank you Julie for sharing.

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    1. Michelle you will always be my favorite Young Woman!!! I miss you weekly visits so much. You are so awesome!

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  7. Julie, you are truly an amazing woman. Your family is beautiful, and so is your life. It is people like you who inspire me. Thank you for sharing.

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  8. Wow, if I wasn't amazed enough from last week, I am even more amazed now. I wish I could know you in person, because just from your story, you are one of the most phenomenal people I can think of. You have such power and positivity through ALL of that! I really don't think Heavenly Father could give you anything that you couldn't handle. And not to mention you are beautiful! Thank you so much for sharing! I feel really inspired from your story.

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  9. Well done, friend. Well done. You inspire me. I cried. I felt deeply. And you still inspired me. Not that any of that matters. What really matters is what you did with what you were given. You are a shining example to me.

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  10. This is maybe the most beautiful family portrait I've ever seen (besides ours, of course :)). I love the love that is all over that canvas!

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  11. Beautiful story! Thank u for sharing your courage and strength ! U are awesome!
    P.s. jacy my old stone cliff friend ( ; I just found your blog! U are so talented with words and conveying your thoughts! Plz say hi to your parents! - Krissy Debenham (now Thomas)

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  12. Julie, Thank you for sharing your story of resilience and love.

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  13. A friend just sent me the link to this post. I have a daughter with the 22q deletion. She is one. She was born with a severe heart defect and has had 4 heart surgeries so far. She too is the joy of my life. Thank you for sharing your beautiful story!

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    1. I am going to send you an email! Thank you for reaching out. I am so sorry to hear about your little girl.

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  14. Thank you for sharing your beautiful story. I love your Quote from President Monson, it really brings me peace as I too have a son with 22Q. You are a strong and amazing woman who is truly blessed! You have helped me grow through your story and have helped me to see life and the love Our Heavenly Father more clearly. Thank You!!!!

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    1. I would love to chat with you! Thanks for reaching out. I don't know anyone with 22q kids and now I have 2 new friends. Send me an email, (I can't find yours). jjtoone@gmail.com

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  15. Julie... Thank you for taking the time to tell your story. You simply are amazing! I am a pediatric nurse and just love my special needs patients. They will always have a special place in my heart. Best of wishes for you and your sweet family.

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  16. Julie, I was given this link by my sweet friend ^^Noelle. She and I know each other through the heart mom support group we are a part of, and I too have a little boy with 22q deletion. He has Tetralogy of Fallot, also like Noelle's little girl. From the moment I started reading your post, tears streamed down my face. Our little boys personalities seem very very similar (never cried as a baby, very quiet and sweet and easy going). I would love to chat with you more!! Cameron is so darling, and I love finding other momma's who are going through the same things as me. I'd love to hear from you- my email address is aejamba@hotmaildotcom. Also, my family blog is http://annieandpaulstaten.blogspot.com/
    Hope to hear from you soon! :)

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  17. What a beautiful family and story of love! Hugs to you and best wishes for the journey you are on!

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  18. Those boys are the most beautiful sight!! You are amazing and that little splash of pink on your lap is precious too!! You inspired me tonight.. Please know that you touch lives and may The Lord continue to watch over you and your lovely family!

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