a bipolar daughter and the family who loves her

Not Going to Camp

2013-05-21T19:08:00.002-04:00

Caroline took the news about her not going to the camp in Canada really well. She was relieved actually. Between the knee surgery and her need for sleep, she was worried that things would go wrong. We have come up with an alternate plan, which involves the beach, which she is very happy about. So even though we are losing some money, the peace of mind we have now is worth it.

This is the last week of school. She is being exempted from her English and Biology final exams. She has only a big history project to turn in, and a few English assignments and she is done. I am feeling myself relaxing already. Like a huge weight has been lifted from my shoulders now that school is almost done. Still don't know what we are doing next year. We need some time to think and pray about it.

The Big "Where Should She Go to School" Decision, Again

2013-05-10T13:28:00.000-04:00

Once again, we are not sure where Caroline should go to school next year. The big public high school hasn't been that great, even with a well-followed IEP. She is begging me to home school her, but I don't know that I want to. The other options are the online high school for this district, an alternative school around the corner, or a private, smaller school, likely Christian. Just praying for direction and wisdom. This is one of the hardest parts of raising a bp kid, the whole educational aspect. Nothing seems to be a perfect fit, and sometimes not even a good fit. I want to do what is best for her academically and socially, but I want it to be best for me too.

Another Crisis, Another Day

2013-05-09T12:20:00.003-04:00

This kid is amazingly accident prone! Two weeks ago she did something to her knee in lacrosse practice, resulting in severe pain and a trip to the ER. She was given Norco, and a heavy duty knee brace and we waited to get in with the orthopedic doc. Got the MRI, saw the doc and he says that she nearly dislocated her knee cap, and in doing so, broke off a piece of cartilage under her knee cap, which then moved into her knee joint, causing the severe pain. She has to have it removed to avoid further damage to her joint. So she has surgery scheduled May 17th. In the meantime, she has been home from school while on the narcotic pain meds, and receiving home bound tutoring again, which she hates. School ends May 24th, and once again she is behind. She went back to school this morning because the is OK without the heavy duty pain meds and can get by on Tylenol.

In the midst of this, we have decided not to let her go to the camp in Canada in three weeks that she has been looking forward to all year. There are just too many risks, especially with her knee, so soon after surgery. And we realized that in order to get to the camp, she has to be up all night on a red-eye flight, changing planes in the middle of the night, and then transferring to a bus in the middle of the night to connect to a ferry. Going without sleep is a sure recipe for mania. That would be a horrible start to a week of camp. She is going to hate us. But we just can't let her do this. We are going to come up with an alternate vacation, maybe to a beach. This year has been such a bummer. If I could afford to take her to Hawaii, I would, seriously. She deserves it.

Feeling Like a Failure

2013-04-10T14:15:00.000-04:00

Do you ever feel like a failure as a mom? I am struggling with those feelings this week. I have been sick for 10 days, and sick enough that I have spent a lot of time in bed, doing nothing, or sitting in front of the T.V. doing nothing. The house is a mess, the laundry backed up, the fridge was beginning to stink, my papers had exploded everywhere in the kitchen because I started a project and then got sick and couldn't finish. My kids are frustrated with the mess, even though they help to create it, but my husband is a gem. I am so glad the kids do their own laundry. At least that isn't my responsibility. And I did get Caroline to thoroughly clean her room this weekend, which was huge as her room looked like a bomb had gone off in it.

But I think my struggle is deeper than the chaos of the last 10 days. I sense a lot of disappointment from my younger two, over a lot of things. Some of it is false expectations that they need to get over, some is legitimate over having a bipolar sister who takes so much attention, but some of it is disappointment with me as their mom. I haven't always kept my promises. I have made promises I never should have made. I have been too harsh at times, and not strict enough at others. I really wished for the perfect home life for my kids. And of course perfection is a myth, but I find myself still longing for something I can't have.

I am thankful that I know God is faithful, when we are faithless. I know the truth, it is just that sometimes my feelings loom larger. I just want to be over being sick, and I want to get through the paperwork involved in buying this house we are renting, oh, and doing our taxes, and getting organized enough before school gets out May 28th that the summer won't feel so overwhelming.

At least Caroline is stable. I have to say that every day to remind myself of all the blessings that come out of that one thing.

Back to School, Part-Time, Holding Steady

2013-04-07T16:36:00.001-04:00

I haven't been writing because I have been sick and before that I was super crazy busy from about mid-March. Lacrosse season and soccer season are in full swing, so adding the games and practices to our crazy family schedule has put me behind in everything, including doing our taxes!

Caroline has started back to school, one period added each week. So far the results have been mixed. Some days she has gotten the migraine aura of the visual disturbances, and some days she hasn't, while wearing the special prismatic glasses. I thought this would happen. I have a feeling that we aren't going to see a miraculous "cure" or perfect solution to her sensitivity to florescent lights, or the projectors. Not sure at this point of she will finish out school at the public high school this year. We will see how this week goes. If we don't see major change, we may just have to homeschool the rest of high school. I can't even think about what to do about college yet. One bridge at a time.

She is in heaven with the lacrosse side of things. She is wearing a rugby helmet, the only one on the team who does. So far, no injuries, no collisions. She is making some amazing goals. We are so proud of her! We pray that her season continues concussion-free of course.

For those who have commented recently, please know how encouraged I am when you comment here. I do read them and sometimes I don't have time to reply like I want to. You are blessing to me and I hope this blog is a blessing to you! We are in this together!! For us it has been ten years and God has been so good to bring us stability now for the last four years or so. I believe this kind of stability can be found for your child as well, with lots of trial and error and the right help. It might take years, but I really believe if you keep pursuing and advocating, solutions can be found. Not a cure, not perfection, not even a truly"normal" child, but a much improved quality of life, for your child, and for your family.

We Missed Her First High School Varsity Game

2013-03-14T09:04:00.003-04:00

Yes, my fault. I messed up the times of the JV and Varsity games. She scored some amazing goal in the Varsity game apparently. But they put her in the JV game too so we got to watch her score several goals. Sigh. One day I will get it right!

Paralysis

2013-03-13T15:11:00.000-04:00

I struggle a lot with feelings of total paralysis. When you live in a state of constant crisis, not much else gets done. I ask, "Am I just lazy?" But then I remember my life is so very, very abnormal. Regular motherhood is stressful and overwhelming at times, no matter how rewarding. Being a constant caregiver magnifies everything by a hundred. I don't start projects because I know I won't be able to finish them. Today was a perfect example. I could have done so much, but Caroline's needs got in the way. I know it won't always be like this. It is what it is. My third child ask me why I am so tired all the time. Well, I chalk it up to the emotional strain and the lack of consistent exercise, and whatever else. Oh, and being 45. Oh, and the antidepressants that I have to take or else I end up in a ball on the floor. So I am soporific but sane. But today is a beautiful day, quiet and sunny. So at least I can enjoy this day that God has made. And I am.

What is My Responsibility? What is hers

2013-03-11T15:53:00.002-04:00

I have a feeling I need to stop hovering. I am hovering over Caroline constantly: "Have you done this, have you done that, when is this due, don't forget to include this in your paper..." etc, ad nauseum. I am so stressed out over whether or not she will be able to keep her grades up enough to play lacrosse that my stomach hurts. I just don't want to deal with the fall out if she ends up sitting on the bench for the season. The end of the quarter is officially the 15th. I think we will have some wiggle room next week as far as turning stuff in. But I can't even breathe today. Having a hard time letting go of her, of my desire to make sure everything is done, done correctly, turned in within a reasonable amount of time. This is exhausting. Makes you just want to crawl in bed and pull the covers up over your head until school gets out for the summer. I can't believe we have two more years of this. I would love to think she won't need us to hover over her after the end of this semester, but I can't imagine her doing this on her own. She misses the fine details of big assignments. I don't know how she is going to handle college at this point.

And as we are looking to buy a house this summer, we are realizing we have to deeply lower our expectations of what we can afford now that he is in full time ministry. I am having a hard time with this because I certainly don't want another fixer-upper. We have had enough of that . Raising Caroline is stressful enough. We don't have the energy to deal with an old house that needs a lot of remodeling and repairs. Ugh! You would hope that something in our lives would be easy!

Went to the gym to try to de-stress and it didn't help. Drove around looking at houses and that really didn't help as everything I liked was way out of our price range. Came home to my messy house and that didn't help. I need Jesus today.

Birthday Surprise!

2013-03-09T08:59:00.001-05:00

Caroline's lacrosse coach surprised her with cupcakes and a spontaneous chorus of Happy Birthday from her teammates at the end of practice yesterday. Yes, so nice! Thank you, Lord, for another affirmation of your love. Made Caroline's day, probably her whole year actually.

Milepost 17

2013-03-08T17:24:00.003-05:00

She turned 17 yesterday. I consider every year that she is here with us a miracle. Or even every year without a hospitalization. We have been dealing with this diagnosis for ten years. So many teens her age with early onset bipolar disorder are not half as stable as she is. We are thankful to God for her, for great doctors and psychologists, for medicines that weren't around 20 years ago, for our caring family and friends. I know she is too!

Slowly Getting Better

2013-03-01T13:00:00.004-05:00

Oh, I am so glad for this blog! I am so glad that I have a place to vent without judgement! I have to be careful what I say on Facebook. And sometimes I can't even pick up the phone to call someone to talk because it is just too hard. I know you know what I mean if you deal with this kind of heartache every day. You just don't want to talk about it because there is too much to say.

The concussion doc cleared her for gradual return to play. Yes, praise God! But I couldn't even rejoice over this yesterday because I have been holding my breath for so long that I still can barely breathe. I just felt numb. I think the only close analogy is if your child is suffering from a life threatening illness (which she is actually) and a doctor comes in and says that their blood count looks good, for now. A little dramatic, but when you have a child who suffers every day, and has so little that is positive in their lives, and that one thing might be taken away, you as a parent cling to that hope as well. Could it be an idol, something that has too tight of a grip on us? Yes, I know that it could. Life is more than a sport, I agree wholeheartedly. Far more. But I have a sick child. With no friends. And major academic struggles. She needs this.

The IEP head, again the most amazing gem in the world, has told Caroline's teachers to not count her missing assignments as part of her grades right now, so that her ability to qualify to play lacrosse isn't jeopardized. Yes, she is an angel. God has put her in our lives. Just want to cry.

We will try to put Caroline back in school next week for just an hour or so at a time, to see if these glasses counteract the fluorescent light sensitivity I know I said we were leaning toward just homeschooling her, but we decided that we need to give it one last try. She needs to be able to deal with fluorescent light at some point because life is full of it everywhere.

Thank you for praying. I felt it.

Megan

Anguish

2013-02-27T10:30:00.001-05:00

I don't know what to say except that this is a really dark, dark time for Caroline. She had a full blown breakdown last night, sobbing and raging for a long time, crying out, "Why me!?" over and over again. Heartbreaking. The prospect of losing what is dearest to her, either from poor grades from so much missed school, or from denial by the doctors, is killing her. I regret not homeschooling her this year. I feel a lot of guilt over what I could have done that may have changed the course of this year. I am bewildered by the silence of God. Please pray for her not to lose hope or faith that God is good, that He loves her, that He will not always seemingly hide His face. I was reading the Psalms last night, struck by how many times the writers cried out to God in anguish, asking how long they would suffer, how long God would stay silent. I want her to experience the God of all comfort.

Sorrow

2013-02-24T17:48:00.000-05:00

We are having a down day here. Caroline told us she feels fat, ugly, and friendless. Her one new friend apparently is into the wrong stuff, so she doesn't want to hang out with her. We tell her she is beautiful and wonderful. I don't think she believes us. I am hoping she will go to the FCA meeting this week (Fellowship of Christian Athletes.) She needs some new friends, fast.

Prismatic Glasses

2013-02-21T20:45:00.000-05:00

So we ordered these prismatic and tinted glasses today, which the vision doc said should help with the fluorescent light issues. They will arrive in a week, and then we need to test her out under fluorescent lights. I would love to see her back in school personally. She goes back to the concussion doc next week to determine if she can play lacrosse or not, based on the report from the vision doc. I am praying he clears her. She has so little in her life that is positive and encouraging and affirming. God you know what is best, but we are really praying for a yes.

For Real??

2013-02-20T12:30:00.001-05:00

And to add to the absurdity of our lives here, I took Caroline on a nice, calm, trail ride at a stables about 2 hours away. I made her wear a helmet, of course. But what could happen on a leisurely trail ride? Nothing, until her horse saw the barn at the end of the trek and decided to bolt. Guess who got thrown off her horse? Yep, my kid. No one else, just my kid. The one with the concussions. Sometimes I wonder why God allows certain events to happen. I mean, why didn't I get thrown off my horse which also decided to gallop to the barn? Or the other riders whose horses followed suit? She ended up with a very bruised hip. Thank God it does not appear she hit her head at all. But, for real??

Appointments, Appointments

2013-02-20T12:26:00.002-05:00

I really do think I spend my life taking her to the doctor, the psychologist, psychiatrist, orthodontist, dermatologist, physical therapists, vision therapists, tutors, labs, you name it. I love her so much, of course I want to do these things for her. But man, the lack of routine can get old. I struggle to find time to just do laundry, or organize, cook, or work out. Often when I make plans to do these things, my plans get rearranged by her needs. We do what we have to do but we all have the need for rest, for rejuvenation, and for clean underwear. I thought this year was going to be so much better putting her in public school, having the big IEP, leading to more time for myself, maybe even getting a part time job. I have come to the conclusion that until she is in college (and probably living at home) and working, my time is simply not my own. Time to give up that hope for now. There will be other years ahead.

This High School Rocks!

2013-02-02T15:39:00.001-05:00

The principal of the school was outside when we were going in for the IEP meeting yesterday and he stopped us to say how badly he felt about Caroline's problem with the fluorescent lights and that he was having his maintenance people look into lighting alternatives. Wow. Talk about a wonderful principal!

The meeting itself with the school nurse, school psychologist and the special ed head went very well and they agreed to pursue the five hours a week, home-bound tutoring. No one batted an eyelash but all were completely sympathetic and eager to do whatever it takes to help Caroline succeed. We will need to get another clearance from a doctor before she can play lacrosse. No surprise there.

I found out about something last night that might be of interest to the neurologist. Something called occipital lobe seizures, which often present as headaches and visual disturbances, brought on by things like strobe lights or fluorescent lights. Apparently, you can develop this as an adolescent. Caroline may not have this at all, but I think it is worth looking into.

We have another IEP meeting on Wednesday which will include her teachers, to bring them all on board with the new plan. Hopefully all will cooperate and get her work to her as needed.

The relief in this household now that all is set to keep her home is palpable. Everyone can relax finally. Thank you Lord for such graciousness from the school and the IEP team.

Bringing Her Home, For Now

2013-02-01T11:02:00.001-05:00

We have made the decision to bring Caroline home and either have the school provide home based tutoring or to just outright homeschool her. She is very depressed and frustrated that she can't even do more than an hour at school before the room starts spinning and she gets a horrible migraine. We are frustrated and I feel my stress level going from moderate to severe. This pattern is helping no one.

Today we have an emergency IEP meeting with the IEP staff and me, my husband and Caroline to discuss what home based instruction would look like. We have heard some mixed things about the success of home based tutoring, mainly that not every tutor is as dedicated to ensuring their student is getting all of their work from the teachers and being consistent about interfacing with the school and the student. Maybe we will give it until the end of the quarter and decide if it is working or if we need to just withdraw her and homeschool on our own.

I must say again that the Special Ed head is AMAZING and so dedicated to Caroline and to finding solutions. She even wrote her a card reminding her that God is working all of this out somehow for her good and citing Romans 8:28-29. How could we ask for a better IEP team?? But even with such a blessing, Caroline just needs to come home for now until we determine how to treat her photosensitivity to fluorescent lights. Her grades have really slipped too and now lacrosse may be in jeopardy for the spr9ing season.

She decided not to go on our church youth retreat this weekend, I think out of fear of rejection more than anything. She is so gun shy concerning relationships with other teens, and who can blame her?

One day at a time, right? I feel so much relief at the thought of not worrying about that daily phone call from school, but homeschooling will present its own challenges too.

Heartache

2013-01-25T14:08:00.001-05:00

You know that feeling when you are just so sad for your child because they can't function in the "normal" world? Or when the stresses of taking care of them combined with all the other stresses of life just get to you and feel so heavy? Today is one of those days.

The special glasses we got her made the scrolling vision worse, not better. She had to leave school early again. I don't think she has spent one full day at school since school started back up after break. She needs an education. She needs consistency. She needs to go through a day without a migraine. I need days without the dreaded phone call. Just sad today. And frustrated. And worried. And discouraged.

Tag, You're It!

2013-01-24T14:12:00.001-05:00

I don't know why I hadn't thought of this previously. In light of the fact that I am literally at Caroline's high school on a near daily basis either picking her up because of migraines, or dropping her off late because of migraines or whatever (lately it is a stubborn virus giving her bronchitis and sinusitis), I have had almost no unbroken time to myself to get my own stuff done at home: laundry, filing, paperwork, or even working out. Since I have a full partner in my husband, I am going to ask him to give me one day a week "off," where he is the one to deal with her and the school. He will get the phone calls or texts, and I get a full day to myself. After all, I too have a full-time job running this household. I may not get paid (wish I did!) but I need time to get it all done. Single parents who work full-time have no option but to leave work if their child is sick and needs them.

And on this note, I am seriously going to look at the option of having her do the public online high school next year. She is home so much and her education has been quite interrupted. She could still play on the lacrosse team, and she would have the accountability of having teachers to whom she would have to turn in work on a daily and weekly basis. I spend an awful lot of time driving to and from the school as it is. Maybe going to school isn't the best option for her or for me. It hasn't been the source of friends for her that she thought it would be. Her source of friends has been outside of the school. We need to pray about this, obviously.

Of course this would mean I would be home all day with her. So I wouldn't really have time to myself. But I don't now either. Maybe I won't until she goes to college. And even then we know we will be "on call." This is what it is to have a special needs kid. No real breaks. But God has used her to humble me. I needed humbling. And compassion for people who don't have it all together, like me.

Sick

2013-01-15T20:26:00.000-05:00

So the season of colds, flu, strep begins. Can I just say yuck? Missing school. More make up work. Sigh. Just when I think we are getting back on the bandwagon!

Survived the Holidays, and Then Some

2013-01-03T21:09:00.001-05:00

This new friendship between Caroline and this girl has really blossomed over the break. I just continue to pray that nothing happens to spoil this new relationship. She has been burned a lot.

The kids go back to school on Monday. I am thankful and sad at the same time. The break has been good, from Christmas Day on. I think everyone kind of relaxed after Christmas. My husband and I enjoyed a night away on New Year's to celebrate our 20th anniversary, which was back in June but which we didn't have time to celebrate because of the move. Thankfully Caroline is stable so we could go.

So I pray that your New Year will bring peace for your family, and hope, and some small victories.

Fondly, Megan

A College With One Class Every Three Weeks

2012-12-28T10:44:00.002-05:00

There is a private college in our town, a very good one, that has an interesting approach to learning. Instead of taking five or six classes a semester, you take one class at a time, lasting for three weeks. So you only have that one class to focus on at a time. Sounds ideal for kids with executive functioning issues or ADD. We would love Caroline to go here, but don't know if she will be able 1. to get in, and 2. to keep up as this is a rigorous institution. But they do have women's lacrosse, and she could live at home so we could monitor her meds and moods. We have a couple more years but we are already scoping out possibilities for college now.

Struggling to Enjoy This

2012-12-24T09:55:00.002-05:00

I am admitting I am really struggling right now. With anxiety, depression, anger and disappointment. I think that I had a lot of false expectations of what this Christmas in this new house, new town would be like. Two of my kids are really resentful that we have moved here, that they are far from the home town they grew up in, far from their friends. Nothing feels right to them. I have picked up their negative emotions and responded with anger. I want them to love living here because I love living here. I longed to lived here. I longed for positive change not only for Caroline but for myself. Now we are here and we are getting much resistance. I thought that Christmas all together here would be fun, filled with great family memories. I guess my expectations were unrealistic, at least for this first year, having only been here six months. I need prayers for peace in our home and for real joy. And for patience with my kids. And the ability to not take on their negativity.

The Christmas Crush

2012-12-22T13:19:00.001-05:00

I have a love/intense dislike relationship with Christmas. I love the spiritual part of Christmas, and I actually love to give gifts. But the hustle and bustle, the same Christmas songs played over and over ad nauseum, and the T.V. commercials designed to stir up our greediest inclinations all combine to make this season exhausting and stressful. Today my husband was supposed to take the girls aways for the day to a huge beautiful mall an hour north so I could clean, finish shopping and wrap presents but Caroline doesn't want to go. I am disappointed because I really wanted the whole house to myself, but honestly I understand why she would rather lounge than spend hours in crowded surroundings with noise and lights and people pushing. Probably not the best environment for her. So she will nap and watch T.V. and I will try to pretend I am alone. Three more days.