Letter from Her Camp Counselor

I had to post this letter because years ago I never thought that praise like this for my daughter could ever be possible.  So I am printing this to give you hope, that with the right medications, the right psychiatrist, the right psychologist, the right school environment, the right therapies, a supportive family, and lots of prayer, your child can be, for the most part, the kid you always knew they were, apart from a disorder that isn't their fault.  Never give up finding answers for your child!  Stability is possible, a "normal" is possible.  Here is the note we received this week:

"To the Parents of Caroline,

Hello, my name is 'Emily' (I changed her name) and I had the pleasure of being Caroline's camp counselor this week....(we) thoroughly enjoyed having Caroline in cabin 11 this week!

Caroline was a great asset to our cabin this week.  She is very respectful and knows wrong from right.  Caroline was never rude to anyone at camp, she is truly a polite, nice and caring girl.  Caroline always had great insight during our devotions.  Whether we were discussing friendship, honesty, unity, respect, faith, etc., Caroline always shared what it meant to her and every so often we would get a story or two from Caroline.  This is just part of what Caroline added to our cabin.  She brought everyone together and made sure never to exclude anyone....We thoroughly enjoyed Caroline's company this week in Cabin 11, she was such a pleasure to be around.  We would like to wish her the best of luck for the future and hope to see her next summer!

Yours truly,

'"Emily'"

You can only imagine how proud we were to get this kind of report and how humbled we are by God's faithfulness to our family in spite of all we have been through together trying to help Caroline have a "normal" life in spite of early onset bipolar disorder.  I pray that one day you too can receive this kind of report about your child, that others can see what you see in your precious child beneath the veil of the disorder.

Do You Have "Soft" Bipolar?

If you are ever wondering whether or not your symptoms of depression, anxiety, irritability and impulsiveness, seasonal affective disorder, and severe PMS are more than just regular depression, SAD, PMS or ADHD, you need to read this book:  Why am I Still Depressed? Recognizing and Managing the Ups and Downs of Bipolar II and Soft Bipolar Disorder, by Dr. Jim Phelps.  This is a must read if you have gone from antidepressant to antidepressant and never feel that great anyway.

Post Camp Letdown

Camp was amazing for Caroline.  She came home with a million stories and had a blast at this highly structured YMCA camp.  Now the letdown has happened and we are all experiencing it along with her.  She wishes she could have stayed for two or three weeks, and I wish she could have too, but the end of camp will come anyway, and then you are back in your regular environment after what likely felt like heaven.  Yeah, she has been in a perpetually bad mood ever since.  Great.  Now I want to school to get here fast, even though I know it will be back to homework nightmares again with her and Mae.

But we do want her to go to this same camp for an extended period of time next summer so we will start planning now, provided she is stable of course.

My husband's temporary job with the Navy is supposed to end this Friday, but he may be getting a medical hold to extend his orders another six months to a year.  We won't know until the end of this week or the beginning of the next.  Lots of paperwork and people in authority to make decisions.  If he isn't extended, then we are back to finding a job in the civilian world, oh joy.  If he is, then we have more time to figure out the next step after he is done with the Navy.  This whole process has been so draining for both of us.  I know my husband is really stressed out that we don't know even what the very near future holds.  God is leading the way, we are trusting in His good plan.

A Postcard from Camp

Thankfully, Caroline seems to be doing really well at the YMCA camp.  Today we received a postcard which said, "I have made a really great friend her name is 'Kim' and she's my new best friend; we're like sisters right now. :) Oh, and this is the most epic camp ever! I'm having such a blast and I've never had so much fun in my life!!! :) Everyone here is so nice and friendly....I love it here!!"  So with only one more full day ahead tomorrow, in record heat, we are thinking she is going to be just fine.  I did check with the Health Center to make sure she was getting all of her meds on time and they said everything was going great, she wasn't missing doses, and that a few other girls in her cabin took meds too.  She seemed quite happy to them.  So maybe this will be an annual camp for her.  There is a three week session, but we shall see.  This is enough for right now.

The heat here is unbelievable.  I had a migraine all day from just watering my outside plants this morning.  Stay cool!

Neuro Psych Appointment

Well, I actually really like the neuropsychologist that Caroline saw on Friday.  He did some tests and said that they showed the same results that were of concern to the sports medicine doc, so we will go back for about three hours of testing in a week or so.  I am not too concerned because the areas she is scoring low on are the same areas she has always scored low on: processing speed and working memory.  I don't think the concussion has anything to do with these scores.  But it is good to have another look at her brain and the way it works since it has been two years since she has had comprehensive testing done.

Caroline is going to camp TOMORROW.   Yay! The YMCA Camp Silverbeach accepted her, in spite of her long med list and the recent concussion.  So we went shopping today for various items for  camp, and she is very excited.   I wrote a short letter giving the camp staff a heads up about her triggers, etc.  Hopefully, all will go well and she will have a great time and there will be no "incidents."  The only big concern we have is that she get enough sleep every night.  Sleep is a huge factor for bipolar kids and teens and lack of it can greatly affect their moods.  So we are sending along her melatonin, Rozerem and Benadryl and hope that she can sleep in spite of the hard camp mattresses and noisy roommates.  Maybe she will be so worn out by all of the activities that this won't be an issue.  Anyway, I am looking forward to the break and I know that she is longing to have the kind of summer camp experiences her three sisters get to enjoy.

Giving Both of Us a Break

The straw that broke that camels back came today when Caroline and I got into a major fight.  We were both ugly to each other and I realized afterwards that I need a break from her and she needs a break from me and probably her sisters.  So we are sending her to a sleep away camp next week.  Even though it is a financial strain for us,  at this point, my own sanity depends on it.  Being a caregiver 24/7 for a teenager with bipolar disorder is exhausting, and honestly, I am completely depleted.  So we are digging into our savings and sending her.  She is very excited about this.  So am I.  Hopefully she will come back without another concussion!

Boredom

I am now counting the days until school starts.  I can't seem to come up with enough for Caroline to do.  She is BORED and with the concussion, she is limited in what she can do.  She is too young to get a job, and too old for most camps.  And we can't afford the camps we want to send her too, like Summit in Pennsylvania for bipolar kids and kids with other special needs (next year, please!)  I felt desperate today to find SOMETHING constructive for her to do that wouldn't break the bank.  She made a lacrosse poster but that only took up about 1 hour in the day.  Sigh.  I wish August held something great for her to look forward too, but by then all the lacrosse camps are done.  Argh! I need a break here!

A Surprise Letter from Caroline

I just had to post this letter to remind myself that all in all, Caroline is doing remarkably well considering all she faces.  She left this for me to find this morning taped to the coffee maker:

"Dear Mommy,

I just want you to know what an amazing, beautiful, awesome, outstanding, incredible and irreplaceable, wonderful mom you are to me and my sisters. God truly created a masterpiece when He made you.

Just know that I love you in every part of my being and I'm amazed everyday at at how you push on through the toughest of times.  Through my emotional outbursts, Mae's whining and all the other drama we put out on a regular basis.

How you manage to do all that and look your gorgeous self while doing it is a huge mystery to me.

Please know that I pray for you every single day and I someday wish to me like you.  I'm blessed straight from God to have you as a mother that's for sure.

'Dear God, please bless, encourage, and positively motivate my precious Mommy who I love so very dearly.  Give her peace in this crazy life that can be so incredibly difficult at times.  Jesus give her guidance and de-stress her day-to-day in life because i know it would be so very helpful in her life right now.  Thank you.

In Jesus' name,
Amen.'

With love and constant prayer,

Caroline

or Your C.C."

No I didn't make this up.  She really wrote that.  After a week of me blowing up at her because I was struggling with depression.  That is how she is in the depth of her heart, a sweet kid who really loves us and knows we try our best to love her and help her even when we seem "mean."  God is faithful and has done marvelous things in her life and in ours.

Concussion Still Lingering?

We had an appointment with a sports medicine doc yesterday who specializes in concussions.  He gave Caroline a neurological test and she didn't do so great on it, quite poorly on two sections.  The doc expressed concern about these results and also concern about how many psych meds she is taking.  Most doctors who are not psychiatrists express alarm about how many meds Caroline takes, but what they don't understand at first glance is that A. we didn't start her out on all of these meds at once, and B. that this med combination took YEARS at which to arrive after much trial and error and residential treatment, and
C.  she is the most "normal" she has ever been on this combination of meds and can actually do things she couldn't do before like stay in school and learn, play a team sport, write a novel, attempt friendships.  I always cringe when I have to go through a meeting with a non-psych doc because trying to convince them she needs all of these meds can be a chore.  I find myself feeling defensive and going into "I will show you that I am a smart, capable, intelligent, caring parent who has done her research" mode which probably comes across as a little bit showy.  I want to intimidate when I feel intimated.

Anyway, he would not clear Caroline to return to lacrosse yet or any intense form of activity.  She can do walking and light jogging, but nothing too strenuous.  Bummer.  But until we determine if the neuro test results are just her or the concussion, we have to play it safe.  He has referred Caroline to an neuropsychologist next week to do more tests.  I will bring all of the psych-ed testing we have had done over the years to bring evidence of her lifelong struggle with working memory and processing speed, both of which are in the gutter as far as test scores go.  I am concerned this neuropsych doc is going to try to convince us to take her off some of her meds or greatly reduce them.  I know we are doing the right thing med wise based on her stability over a long period of time, but I still feel intimidated by "experts" who don't know my kid as well as I do.  We shall see.

My oldest comes home from Young Life camp this week, and I must say it has been a nice break to have even one gone from the mix.  I miss her though and look forward to her many crazy stories of camp antics and adventures.

Swimming Against the Tide

We were at the beach the other day and the waves were pretty decent, maybe 3 to 5 feet, and there was a sand bar not too far out that you could swim out too and stand up on.  Very cool.  But swimming out to the sand bar was tricky because the waves were strong enough and the distance was great enough that I kept getting pushed back even when I felt like I was moving forward.  Life feels like that a lot with a bp child.  You keep trying to move forward, you see the sandbar offering relief ahead (school starts in the fall, this other camp is coming, maybe a solid friendship is ahead, perhaps a new medication will solve the mood swings) but you keep getting smacked in the face by waves that want to pull you under.  For me the waves are as much my own poor reactions to life events with Caroline than the actual problems.  The negative things that happen because of her disorder are often not as bad as my own fearful reactions to them.  And there is the ripple effect they have on her siblings.  She is like the pebble dropped into the water, which may stir up the silt already there on the bottom, but the outward rings proceeding from that stirring keep going.  I see God as being like a surfboard, pardon the analogy, to ride the waves that inevitably keep coming.  Without the surfboard, you keep getting pulled under, but with the surfboard, the waves are not slowed, but you can actually use the board to ride the waves get where you need to go.  "All things work together for the good of those who love Him..." Romans 8:28.   Not a perfect analogy, but a good one.

Mired in the Mud

I am feeling like the psalmist who prayed that God would lift him out of the miry clay and to set his feet on the rock high above.  Truly this shall pass but the last few days have been so difficult.  I am struggling with depression in a big way.  I am yelling at my kids at the drop of a hat for no reason, possess no energy to do anything, just feeling irritable and sad about everything.  I think I need an increase in my antidepressant or something.  I made an appointment with a new psychiatrist as I am getting bad vibes about changes at our present psychiatrist's office.  This is actually not a "new" psych doc but an old one, the first one Caroline had when she was newly diagnosed.  We loved her but found her office staff to be incompetent (couldn't get emergency appointments, refills on time, etc.)  We are hoping this has changed for the better.  I need change, in so many ways.  I am longing for a new neighborhood, a new job for my husband, and a better church situation for Caroline.

We actually visited a new church today, finally, after talking about it for years.  Sometimes we can get stuck in the status quo, knowing something has to give, but lacking the will to make the changes necessary to make our lives or that of our kids better.  Stuck would definitely describe us these last few years in regards to our church.  We love our friends there and our pastoral staff, and especially our pastor's amazing preaching, but have felt that this church has never been a good fit for Caroline and thus not for us as well.  Nothing worse than fighting a Sunday morning battle every week with a kid who hates your church.  Change can be hard, very hard, but sitting in this other church today, with Caroline happy and smiling and declaring she had found her church at last, made the drive worth it.  I will do anything so that she would be drawn closer to God and develop a deeper faith in Him and His goodness toward her, and friendships at a great youth group.  Who knows, one day we may go back to our present church when Caroline is on her own and can drive herself where she feels like she fits in.  I think many of our friends will have a hard time with our decision to leave.  But we have to do what is best for our family.

On another subject, my husband's MRI came back that his tumor has not grown at all in six months, so that is good news.  But the neurologist wants Bill to stay on active duty for another year so he can follow this some more before letting him go.  My husband doesn't know if the doc's desires can be fulfilled by the Navy as far as more orders go, so this is the task at hand now, to find out if this will work at all by the end of July.  I would actually like him to continue active duty for another year because we are not in a good place financially at all with the eight months of unemployment this year. I am having panic attacks on a regular basis about finances.  We need time to catch our breath before being forced to try to find a civilian job again.  I am so weary of this season of life.  I just want to move ahead financially and for Caroline, academically, to get her going with high school at this private school and that she would succeed and maybe be able to stay there.  Enough with the ups and downs, God, I am tired!!!  I need a break!!! I feel like Job and I know Bill does too.  Too many trials, too many uncertainties, too much stress all the time.  I don't feel stronger at all, I feel beaten down and exhausted.  Kyrie Eleison.