Saturday, May 29, 2010

Looking Back...

Tonight, I found myself looking through old photo albums of when my boys were just babies at ages 1, 3 and 5 years. I don’t know what it was, but I became overwhelmed with sadness and began crying, you know the kind of cry, when you don’t look so pretty and tissues aren’t enough.

I feel cheated tonight. Those photos brought back so many precious memories. Back then my son didn’t struggle with any mental disorders, he was a young kiddo exploring the world, maybe a little strong willed, but a sweet boy untouched by the pain he’s suffered today. There’s a look of hope and optimism in his eyes that every child should have. As I look at photos of his younger brothers, there’s so much innocence. I feel like we lost something that was suppose to be ours.

Looking at these images I can feel my old self again. I remember the feelings I had as a young mom, my hopes of where we were headed and the dreams I had anticpated. I had no idea that I was going to experience so much pain in motherhood. I never imagined that I would see my children suffer so much. I know life never turns out like you think it will and we’re never prepared for what lies ahead. I also realize that others have suffered so much more, but I wish I could whisper into the ears of my past and tell that young mom in those photos to suck up every moment of joy. To drink it all in and cherish every giggle, smile and sweet moment because my boys will grow up so fast and it will be much harder than I ever imagined. Today, I wish I can look at my boys without the painful memories of what we’ve experienced, I wish I can erase all the hurt my boys have felt and feel that sweet joy I once had as a young mother, just one more day, I want that feeling of hope back.

As painful as these photos are, they’re a good reminder of how time is passing by. I don’t have time to waste, I need to grab all the joy in each day I now have. In fact, I’m dying to wake my boys up and give them hugs and kisses (don’t worry, I’ll let them sleep), but I’m looking forward to tomorrow, because right now I’m screaming at myself to embrace a little of what my “old self” had, that sweet optimism that everything is going to be more than alright.

Friday, May 28, 2010

Great News!

I’m so excited to share that we just got our son’s second urine test back and it appears normal. If you missed the previous post, my son had a urine test last week that showed an unwanted presence of protein in his urine which the specialist thought may be due to his mood stabilizer. This was disappointing for us because we were having such great success with Trileptal and didn’t want to change his meds again.

So I’m happy to share we can now dismiss the first test and continue with the current medication. I haven’t been this excited about a cup of pee since my pregnancy tests, I think I’ll do my happy dance now with a big ol’ smile on my face! Happy friday everyone!

Monday, May 24, 2010

Most Wonderful Time of the Year?

I remember summer vacation being so exciting, it was filled with family fun, the smell of tanning lotion and lazy days that seemed to last forever. But that’s a child’s perspective, as a parent it looks a whole lot different. In fact, one of my favorite commercials is the Staples back to school commercial where the parents are happily buying school supplies for their kids, while singing the song “It’s the most wonderful time of year”. It still cracks me up today, so I’ve included the link below if you want to see it.

If you’re like most parents raising a child with a mood disorder, the whole warm and fuzzy feeling about summer vacation is long gone. Instead I’m feeling a little nervous as my boys count down their final days of school. Last year, at the beginning of summer, my son struggled with all the transitions. He became extremely impulsive and went into a violent rage, losing his best friend who witnessed the whole thing. From there, our summer was a battlefield with land mines exploding everywhere.

Now that he’s on a mood stabilizer, I feel much more confident, but I’m still concerned about him being bored. Boredom has always been a trigger for him, in the past he would bite someone just to start a fight for “entertainment”. So last year, I created a very heavy schedule to keep him busy. We were at the library, the parks and hours at the pool. I created structured craft times and lead adventure nature walks. Then, to mix it up, we went on field trips to the local grocery store, pizza place, fire department and police station. We also enrolled him in a one week science day camp and his Grandma created an awesome “Cousin’s Camp” filled with fun activities. But this year, my son doesn’t want to go to any science camps, leaving all those hours in my lap. And to be honest, I’m feel so tired these days, the thought of all that running around, trying to stay two steps ahead is just draining to me and summer hasn’t even started yet. I already know that the therapist will be instructing me to “keep him busy” and “wear him out”, much easier said then done. I think I’m just feeling run down from this past year and all we’ve been through, I think I’m the one that needs a summer vacation, can you relate?

So can you share any ideas on what you’ll be doing this summer to keep the peace?

Check it out! The most wonderful time of year commercial:

Friday, May 21, 2010

Holding My Breath

Things have been going really great! Not perfect, but great. Our son still has some anxiety and can be overcome with anger, but his response is much better. He’s shown numerous times a new ability to control himself, which is major progress! Even my younger son asked this week if the doctors figured out what was wrong with his brother and if his anger problem was all gone now. Wow, if that isn’t proof that Trileptal (our mood stabilizer) is working, I don’t know what is.

But unfortunately, we’re praying that things will continue. This week I took my son to see his kidney specialist to do his annual check up on his kidneys. When he was a baby he was diagnosed with kidney reflux, a condition where the “door” from the kidney to the bladder doesn’t close properly, allowing urine to flow back into his kidney. During an infection, one of his kidneys was damaged. Since then, he meets with the specialist to make sure his scarred kidney is still growing and functioning correctly.

Well, this week at his annual exam, our doctor discovered that he has protein in his urine. He believes it may be a side effect from the Trileptal he’s taking, it may be causing the filters within his kidney to malfunction. So our first step is to do another urine test. If the results confirm the protein, then our son will need to have a kidney biopsy done to further investigate the cause.

Right now we’re still at the first step, waiting for the urine test results and still remaining optimistic that this is just a fluke. As the doctor said, “You don’t need to worry yet.”

But I have to admit, my husband and I are disappointed, we just want our son to have a break, not yet another thing for him to go through. But in the meantime, I’m not going to worry, just holding my breath.

Thursday, May 13, 2010

Mean Kids Suck!

Today, my son went to school with a happy smile, a skip in his step and an excitement about showing all his classmates his new eye glasses. But when I picked him up, all joy was stolen. He was teased by his peers and was told he looked stupid, weird and dumb. Ouch!

After getting him home, hugging him and wiping away his tears I tried my best to encourage him and bring a smile back to his face. But he wasn’t the same anymore, his spirit was crushed and no words his mother said was going to change that.

It’s tough enough facing your peers as a kid, but for my son, with all his anxiety issues, it’s so much harder. I think he’s so brave for facing these kids, knowing that there’s a tornado of bad feelings inside his gut. These moments are so hard for me, I want to rescue him from all those mean kids. I want to protect him from the world’s harm since he suffers enough inside his head.

To be honest, I worry about what these moments may do to him. Will he someday get to a place where he can’t recover and no longer wants to live? I would normally never think about these things, but after what we’ve already been through, I know that anything is possible. As much as he rages and behaves violently, I know deep down he’s a fragile little boy.

Tonight my son is no longer wearing his new glasses and I feel angry. My Mama claws are out!

Monday, May 10, 2010

There is Love...

Mother’s Day was a treat this year. My husband spoiled me and my kids blessed me with their handmade gifts—which are my favorite. But one gift that I received from my middle child (my 7 year old who doesn’t have a mood disorder) made my heart smile. It was one of those classroom projects, with painted handprints and all. On the back, my son filled out a questionnaire of the top 10 reasons why he loves his mom. I cherished all of his cute answers, but the last answer stuck with me. It said:

“I love my Mom because she works so hard at helping my brother.”

Reading those words gave me such joy. Even though there’s been so much chaos in our home, my children still see the love. My greatest commitment as a parent, that I swore to myself during my first pregnancy, was that my kids would feel loved above all else. Now, I had no idea then what road laid ahead and raising a child with a mood disorder has left me wondering at times if they see the love. I wonder if during the rages when we’re trying to regain control of our oldest son, if our younger children see this as fights? Do they understand where our hearts are as we hold our screaming son during a rage? I know my boys are young, so it’s hard to tell what they think of all this, but I smiled as I read this mother’s day card because it reassures me that there is love, and he sees it.

Friday, May 7, 2010

Bipolar Episode

Last night, my husband and I watched Bipolar Mysteries: Families in Crisis on The Discovery Health Channel. Our initial thoughts... these kids act just like our son.

Throughout the episode I was looking for any information that may help me understand what’s going on with my own son. But I feel just as confused this morning as I did prior to this episode. For one reason, the episode focused mainly on rages and not all the other symptoms that make up this illness. So for a parent searching for answers, I feel like I’m still looking for insight. If I based my son’s diagnosis on what this show aired, then I can conclude that my son is bipolar, but you see, it isn’t that simple. The American Psychiatric Association is proposing a new diagnosis called Temper Dysregulation Disorder. This new disease will not be used for labeling kids until 2013, when the new version of Diagnostic and Statistical Manual of Mental Disorder (DSM-V) is released [1]. I’ll be explaining this more in a future post, but for now, my son shows all the anger symptoms seen in Temper Dysregulation Disorder, but he also has many more symptoms and a family history of bipolar, leaving the doctors with a “let’s wait and see” approach to diagnosis. So for me, I wish the show touched on all the symptoms that these kids are suffering from, but I do realize that it’s just a tv show and it would take a series to portray bipolar disease in its entirety.

Here are my thoughts on the episode that aired last night as well as questions for Kristen, a parent who appeared with her son Chase in the show. Kristen has offered to answer any questions we have on this blog, so if you want to reach out to her, please leave her a comment below.

First, I want to say that I’m so thankful for these brave families. Kristen, my heart goes out to you and all the other single moms doing this on your own. Both my husband and I wondered how you survive as a single mom, it’s hard enough with the two of us. I’m so impressed with you Kristen, you’re so good with your son, you do such a great job of handling the tough moments. Your story about Chase hurting you while you were driving was just terrifying, again, you’re so brave! I think that as much as we question why this is happening to our children, I wonder if God brought these children to us because He knew we could handle it, we could love these kids unconditionally. (just my thoughts)

Watching Kristen fight to carry Chase up the stairs while he was going into a rage was an image out of my own life. I find myself on those steps many times wondering if my son is going to injury us both, it looks easier on camera than it really is! Also seeing the images of Chase running off out the front door, it made me laugh because I’ve been there more than once! I also appreciate you Kristen for sharing to the world that you give medication to your son, not to make your life as a parent easier, but to make your son well, to give him a life. People need to hear this.

It hurts to see these kids suffer, I recognize that "look" in the children’s faces when they go into these rages, it’s the same look our son has. I’m glad this episode showed how these kids are affected by their peer groups, trouble with friends and fitting in. I also appreciate the openness of these parents, sharing how they fear their kids, especially as they get bigger. I also love the statement by one father that “There’s no fixing this, only work." That is so true!

I was touched by the scene where a younger brother, Morgan, went to check on his sister, Kelsey, after a rage in her room. He asked if he could go into her room and she didn’t want him to because she was afraid if she got mad she was going to hurt him. This alone shows that this isn’t a child that’s a bully, but one that’s suffering from something that makes her rage beyond her control. These kids don’t want to hurt others, they just can’t help it. I’ve seen this with my own son. It’s this reoccurring behavior that has hurt my son’s self esteem. He thinks he’s a bad person because of how he’s hurt us in past rages, even though it’s out of his control.

I thought the doctors represented on the show were all caring and in touch with their cases. I felt that the show limited the view on bipolar to only rage issues for the most part, it would’ve been helpful for me to see more of the other symptoms since we’re still trying to determine what my son has and like many kids, it’s a lot more than just rages.

I wish it was possible to get a better view into these kids lives. For example, seeing your child rage, then want to kill themselves, even grabbing a knife, demonstrates the illness in such a way that you have to agree that it’s not a tantrum. I just think it’s hard for anyone video taping to capture how bad it really gets. In the toughest moments, a parent can’t stop to video tape, instead they’re trying to keep their child from jumping out of a window. So unfortunately, I don’t think what these kids are REALLY going through can ever be documented. But on the flip side, there are subtle moments seen in this show that show a deeper view of what’s going on. If you remember in the beginning, where Chase is throwing things around in his room, he says that he “needs someone to help him”. This is not a tantrum, he really does need help! Then there’s a very subtle clip where a girl is screaming in anger, throwing stuff around, but in a small gesture, actually “straightens” the puzzle on the table that she has ruined, then goes on to throw more stuff. This shows a piece of her, under all that rage, that hates what she’s doing, she hates that she has ruined her sibling’s puzzle. This subtly demonstrates that there’s “good” deep down in these kids when the rage takes over.

Over all, I’m glad this show aired. I’m also sad to say that this looks like our life in so many ways. Thank you Kristen, Chase and all the other families for sharing your life with us, I believe good things will come out of this.

Questions for Kristen:
The last I’ve heard, you’ve not seen the episode yet since you were in Disneyland, but based on your experience and public reaction, are you glad you participated in this show?

What are Chase's symptoms overall?

What symptoms made the doctor label him as being Bipolar?

Does he have more of the “giddy happy” mode or more of the “depressed” mode going on?

What symptoms does Chase have that has required hospitalization?

How have you dealt with the devastation of hospitalization?

Do you ever have medications help Chase, then completely stop working?

What seems to help Chase the most?

Thank you so much for opening up your life to us, you’re helping so many parents, we appreciate you!