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.
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 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 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.