Dear Christina,

You obviously can’t talk. I read your June 8 blog. I have OCD, so I am fighting the urge to continually, frantically call you. I will stop now. I am sorry. Just so sorry. For the little boy, for the littler boy, for Joe, and for you. Sorry doesn’t help though. It doesn’t put a band-aid on anything. You know a major change needs to be made, but you need someone to tell you that it is ok. Or even, what the hell to do.

I called you the day before the biopsy, because I would be at my mom’s and I thought I might need a drink with someone afterwards (I was right.) Then I proceeded to leave my phone in the minivan (we drove the blue car) and missed your call back. I didn’t want to bother you. Little did I know I would proceed to call you seven times because my worry shifted from Afina to you. I guess it helps to worry about sometone other than the elephant in the room for a while. Al ended up meeting Jon and I that night, at the last-minute (after AI stopped crying.) Her date stood her up again. SO it worked out-LOL!

When you first called, you were checking on Afina-right? I will just briefly tell you that I am in la la land as well. I can hardly breath. She seems fine. Except for the nightly stomach pain. She plays catch outside with dad and sis. She plays the piano almost constantly; she says it is the only time she feels relaxed. But, nevertheless, at the biopsy, they found something “surprising.” I love surprises-not. They weren’t even checking her stomach, but there, as clear as day, is a perfect, not-so-small, cut. Probably ulcers. She is nine. nNd as we speak I am yelling at her. So helpful of me. I suck. We are considering a raw foods diet with only fruits and vegetable. I am going out to buy the food dehydrator and the food processor today. There is so much more, and I am so depressed. But I will spare you. I can only imagine how you are feeling right now. I just wanted to fill you in on why I have been extra spazzy.

I don’t know what it is for you, but for me this is it: Two things (among others) #1: when is it going to fucking stop?!   Everytime the phone rings it is a new diagnosis. We are exhausted and confused and scared. #2 I am in mourning too. It is a death of her normalcy. I have been saying that sentence for days now. Everything I tried for, to make my children as normal as I wasn’t, is over. It will never happen. I married a teacher, moved them to the suburbs, shaved my underarms, signed them up for dance class, and became the girl scout leader. But children who eat only celery and apples, get biopsies every five minutes, have asthma, OCD, and a bazillion other issues are just not “normal”–whatever the heck that means!

I am tired of fighting, being angry, scared, mean, crazy, nasty, depressed, pathetic, weak. I am angry on behalf of myself, my children, YOU, your children, and all other parents and children who are angry ,confused, and sad.

I am sure none of that helped you in any way. So I will just add: Somehow, someday, everything will be “ok.” It f-ing has to be. It’s just gotta.

Love, Katrina-weena 🙂

Dear Christina, (quick note)

such drama. I feel better now. We just talked. Thank you. My feelings are so fickle. I will try to write the letters AGAIN now. I am still tired. Thank you for telling me what’s going on with you. That’s awful and not right. We will talk on Friday. Can’t wait. (did I say that already?) 🙂

love, kat

Dear Christina,

This tiredness, this weakness, this “melancholy,” that I have been fighting. It is now fully here, and it is now called depression. I wept on and off all morning, about Lorraine and the sudden jolt of reality that has apparently come over me, but I was fine once the girls were up and about and we were going about our day. I can’t send them on the bus anymore because of issues with the ignorant bus driver, so I drove them in. As we were pulling up to the drop off, Luvee was panicking because her class was already going in. I kept telling them to “just get out.” They never listen to me. Then I pulled the car forward some more. This time they decided to listen. Afi was in the door when I pulled up and got smashed by the weight of the door. She is fine. She will have a bruise on her arm but she was fine. She was bawling, however. I am a horrible mom. And now the kids get to see Afi cry yet again, even though this time it is legitimate. I am officially depressed, son longer fighting it. Not only do I suck, but now I am feeling sorry for myself and blogging about it. Every joint in my body is weak. It si in my joints.  I can’t even type any longer. I feel the waves of tiredness floating over me. I have to finish the letter, and touch up some paintings. I need to do the letters. Jon said they need to be done now, before school lets out, not next year. I drove home crying hysterically. The people in cars saw me, especially when I got into my own neighborhood. That is how I started Afi’s morning; by smashing her. I will lay down now.

Dear Christina,

How did you remember that whole post from your acupuncturist? Wow, you are good. Or, did you write it down immediately in that little notebook you carry around in your purse? 🙂 I never have the guts to give pep talks like that about marriage, it would sound too dorky coming from me. So I am glad she said it. Good words, easier said than done, but good. Can she give me a pep talk some time?

Did things go better with Joe this evening? Have you seen him? How are E-Niner and T-Bone? We are on for Friday night, if all goes well. You can fill me in then.

I am considering doing a rebellious thing. I have two confrontational letters I need to write to Afina and Luvena’s school. They are both about serious issues and I have every right to send them. They are things that have been messed up by somewhat incompetent people and need to be set right. I am always the one to take care of this. I am polite, but vocal; though still, I am quite sure, always viewed as the “crazy mom.” Sending these letters is not the rebellious thing I am considering doing. I do these things on a daily basis, not because I like confrontation or bullying others, but because it is a necessity to ensure the safety of my children and quality of their unique educational needs. The rebellious act would be NOT sending the letters. I am tired. So tired. A tired wave is floating over me, just thinking about it. I know that, in part, the wave is coming from my feelings about Lorraine, and even you. The here and now, about school tests, and busses, seems so mundane in comparison. My eyes look heavy, it is a bitter-sweet melancholy that came over me in bed last night, when thoughts about the  letters were over taken by thoughts of Lorraine, and her strength.

The thing is, I have written, and rewritten drafts and drafts of the more serious letter; regarding MAP testing and Afi’s 504 plan, but I just can’t make it “light” enough. They will think I am attacking them no matter what; so why bother?  I am sick of fighting. I have been fighting dysfunctional systems for years now. I just can’t bring myself to set us up for the counter attack again. They were negligent in getting Afina’s make-up MAP testing finished with her, all three testing periods this year. We hate these stupid tests, but it needs to be done. This cannot happen again next year. The worst part is, they blamed it on Afina’s stomach issues (RIGHT IN FRONT OF HER) and the fact that she takes so long to take the tests (4 hours, the principal said.) In the end, she did the math test in 1:36 and scored a 248 (the equivalent of a gifted 6th grader; she is nine) and the reading in 1:07 and scored a 224. Take that!

So, we are totally justified in calling them out on their poor treatment of  our daughter, the fact that they added more anxiety to a child who has OCD about tests, that they did not take ANY accountability for their poor time management skills and unprofessionalism. Also, they basically told me they can’t a child who is both gifted and has medical concerns. BTW, What are they going to do with a child with these scores? We asked her how she cut her testing time in half and added 20 points to her math scores. She said it was her new glasses. “I can see now, mom.” So, it wasn’t her OCD like they thought. So, we are justified, and even obligated to make sure this circus doesn’t continue next year for our daughter. But I just can’t do it , Christina. It is just more of the same, and I am tired.

But I will do it, right now.

Oh, also, I have decided to enter a show, for the first time in four years. The work is done, but the slides and forms are not. All of this BS pushes everything back. It is all due on Monday. We will see if it happens.  Oh, and eye doctor for Afi tomorrow; “white” on the sides of her eyes-is that normal? I think I know the answer. 🙂

Let me know the plan for Friday! So excited. 🙂

Love,

Katrina

PS-Sorry my writing is so poor, I am tired. Have you picked up on the theme yet? I hope YOU are not so tired, Christina. See you soon. 🙂

Dear Katrina,

I had an appointment with my acupuncturist today. She said:

Marriage is when you realize you have nothing left to give, and then dig deeper to find the compassion you need to continue. Marriage isn’t what happens when things are going well, it’s what happens when things get hard.

I’m holding onto that thought for the day. It helped me a lot.

Dear Katrina,

I wish I could write to you about my marriage. We had a major blow-out last night, and things aren’t good. I don’t know what else I can say that wouldn’t one day get me in trouble. What are you doing Friday night?

Dear Christina

First of all, now I feel like I am infiltrating YOUR  journal, since you already have regular readers. It feels funny, but not in a bad way. I am glad to be writing to you. I haven’t known what to say. And it’s not because I have nothing to say; there is just too much. Good, funny, scary, pathetic, etc. First of all, I need to tell you that JR and I had quite a comical converstion about the “troll” thing this morning. Since you are well aware of my extreme lack of connection to technology, pop cultural, and computer lingo, I am sure you can imagine how it went: “Christina has a troll bothering her. She said it was a troll! They are attacking her blog. I think it is an unnatractive person of small stature; maybe even someone we know.” Talk about the “troll” and how I thought it was funny that you used that word went on for a quite a while, until JR finally gained morning conciousness and decided to tune into his wife’s constant blabber. It was pretty funny. Yes, now I know what that word means. He explained it to me with a huge smirk on his face. Good to laugh in the morning.

I had one of those “sigh” looks on my face while reading your comments about the hiding of a mentally ill person in your extended family. I had the same look on my face while reading about your in-laws facial reactions to your very real accounts of your immediate family’s day-to-day life. I know we have talked about this before, in different ways, but it is all about walking around in your own little closet and whether or not you are able to “pass,” and whether you even want to “pass,” for “normal,” I mean. The fact that your in laws may not have even know fully about E-Niner’s struggles is of course NOT funny, but it almost made me smirk for the following reason.

My mother-in-law is a kind, wonderful woman (I am lucky) and we talk at least once a week. If we haven’t talked for over ten days or so, she will call just to “check in.” Anyway, almost everytime we talk, I will say something like “Did JR tell you that Afina got her test results back?” She will say “Oh yes, he told me that yesterday.”  “Ok, so you know that her Eosinophilic Esophagitis has not healed and they are going to do biopsies every six weeks for a while now? And oh, by the way, they removed three more foods from her diet to bring the number to a whopping 14 foods removed.” Her response “no, no, and no.” But we have been going through this for a while, JR hiding his own mental health issues from them, and me illuminating them. Not to defend Joe, but maybe this is just how men are! Or maybe, it is just partly that. The other part may be that our husbands just don’t see the picture clearly, or they don’t want other to see it. JR sees it, I know, he is just hiding it. I think Joe is hiding it from both himself and others-am I right?

The truth is though, the one thing I do hide a little more, from my in-laws and from my own family, are Afina’s struggles with OCD, anxiety, hearing voices, fits of rage, and depression. You helped me with that realization, about yourself. And actually, I don’t even dare talk about her Celiac Disease, EE., and food inolerances to my own family. Keep it all light and funny, right? I will talk about THAT to my in laws, but not my own family. That reminds me of what you were saying; you will talk about these things to your close friends, and even blog about it on the internet, but when it comes to family, it is all done a bit more subtly.

And honestly, JR’s parents didn’t even believe me about HIS  issues for quite a while. Until, his mother finally admitted that there had been TWO members of her family who had lived most of their lives in mental institutions, became old women, and died there. The thing is, Christina, these little tidbits of information are nice to know when you are planning your family. All these secrets cover up genetics. Nice to know who you may be birthing.

I want to tell you two more mundane things (well, one of them is not so “mundane”) and then I will sign off. My dear, dear friend Lorraine (we were roomates through college. She is creative, wonderful, gentle, thoughtful, and brilliant, AND, she is one of the few people, other than you, who is as weird as me, and who I don’t have to explain everything I mean, as I am saying it) just returned from Brazil. She went there to see “Joa de Dios,” a healer from whom the “entities” speak through. Her breast cancer came back, and this time it was stage two mestastic. I can’t even spell that word, it is so awful. I don’t want to spell it. My mother has taught me that talking about these things charges them with energy (partly a Mexican thing.) Thus, part of the reason WE don’t talk about EE or anxiety disorders-lol! Anyway, Lorraine just came back and sent me a package two days after she retuned to the states. Yes, she is fighting the fight of her life and she sends ME and my children a package. She is doing well, her words are always beautiful; about the trip, the people there, the beautiful land, her healing process, and current deliberate seclusion back in New Mexico in order to continue the entities work to heal her. In the package, she sent a wonderful letter, a moblie of moons and stars made from agate, wooden beaded bracelets for each of the girls, and little bottles of passion flower capsules “Prescribed by the entitties” for each of my daughters. She carried photos of them all the way to Brazil and placed them in the “triangle” at Joa de dios’ healing center. (Yes, she was thinking of us, while she was there going through this.) She said the entities will be able to speak to the girls through the herbs and do their healing work. Afina got two bottles, Luvena got one. Probably because this process may take longer for Afi. We were so touched by Lorraine’s time, her words, and her care. So, this morning I opened a capsule directly onto each of toungues. I told them to pray while they were taking the herbs and I prayed for each of them as well. Afterwards, Afi said “Mami, I prayed for Lorraine and Luvee, too.” That’s what I am talking about! My wonderful, caring girls, already being touched by the huge kind act of my college friend and the “entities.” They love Lorraine, I know, and are concerned about her. But still, that one statement made my whole morning.

The other thing is this school thing. I will just post my letter to them here, later. It is just too much to re-explain and I haven’t even finished the letter yet. I do have to say though, and I know YOU know this Christina, that I really resent when people who are not doing their job correctly, make more work for me by being negligent. It is exhausting. But I am going to keep on with the positive momentum of this morning, and finish the letter. I just wrote my first real blog and I am very proud of that fact, am currently on the phone with a good friend, had a wonderful morning with my sweet children without any major outbursts, and heard from two of my dear friends, you and Lorraine. So, I am going with this good energy! Here I go! watch me! 🙂

Dear Katrina,

I’m hijacking our journal, which is getting off to a slow start anyway. Maybe this will rev the engines.

My personal online diary was infiltrated by a “troll,” somebody using a bogus e-mail address who has nothing better to do with their time than to comment on a bazillion old entries. I’m not sure what that was about, but it felt suspicious. I took my blog down for now.

Which means I need another writing outlet!! So here I am. Writing to you.

Though now that I’m here, I’m not sure what to say except that I, indeed, exist. And that’s a big thing, considering last month I didn’t know how I was going to make it from one day to the next. I was living moment by moment, literally encouraging myself to do do things: take a shower, dry your body, put on your clothes, brush your teeth. Every little activity felt like a momentous achievement.

I’m back to feeling nearly to normal. I’m feeling normal, knowing that my life is quite abnormal and imbalanced, but also knowing that one day it won’t feel like this. One day I’ll be back to feeling all-around happy and balanced, if only due to sheer will. I can will that kind of thing, right?

Today I found out that someone in my extended family has paranoid schizophrenia. All these years that person’s illness has been hidden from me. In fact, that person has only existed to me by name. I have never met that person face-to-face. Probably because that person has paranoid schizophrenia. Can you imagine that? A person related to me by blood has this devastating illness, and it has been hidden because I guess it’s embarrassing for everybody else. Obviously I’m not going into detail as to who this person is or even which side of the family they’re on. I guess generations have really changed over the years. In the case of my family member, so much was done to hide the condition; and in the case of my own child, I’m blogging about psychosis nearly all the time.

My in-laws were in town this weekend. I spoke separately to them both about E-Niner’s psychotic episodes. I think they get a lot of their information about E-Niner filtered through Joe, who hasn’t processed what’s happening to the depth I have. It’s hard to have come to this place of acceptance before Joe has, and talking about it with his parents made me feel the distance that he has yet to come. My parents — and father in particular — sees E-Niner’s condition for what it is. He has witnessed the psychotic breaks for what they are, and has encouraged us to get the help we need. In telling some anecdotes to Joe’s parents, their very minute facial reactions made me wonder how much they actually really know about what goes on in our house. I’m not sure what, if anything, Joe relays to them at all. I suppose I could also talk with them about it more, but it’s not an easy conversation: “Hey, by the way, do you want to hear about E-Niner’s psychotic breaks this week?” I mean, really. Who wants to talk about that.

And then I realized that I rarely talk about E-Niner’s psychosis with people outside of my immediate circle of friends. I write about it all the time, but rarely do I mention it to family…

…Maybe I’m not that far off from the previous generations after all.

:)cs

Dear Christina,

I was going to send this to you as a Facebook post, but then I realized I might actually be able to start our blog, FINALLY, with this simple question. So, here is the beginning (or totally thick middle): Would it be okay if I used your children’s likenesses in a painting I am doing? I am using my own girls (Afina and Luvena), but would also like some boys, specifically E-Niner and T-Bone. I have been working on a series of “Disclaimer Paintings” that basically deal with non-typical childhood, parenthood, and physical and mental health issues (though it could also be percieved as adults who are brought back to their childhood due to their own human weaknesses and health issues.) These sound like heavy issues, but they are covered by prettiness, sweetness, and oddness. I won’t go into too much further description, though I am sure I will eventuallly give myslef away here, anyway. I will show you them. The piece I want to include E-Niner and T-Bone in will simply be entitled “Raising Our Children.” The title sounds cheezy, I know, but the visual imagery disconnects from the title in a way that hopefully makes it not so. You know my style; not photo-realistic at all, illustrative, odd, and unfortunately slightly surrealistic. All four of our children will be balanced on top of a stack of patterned baby animals. That’s about it. Not actually THAT deep, but pretty and odd. (Have I used the word “odd” enough yet?) Oh, and their heads will be big and bulbus. Is “bulbous” a word? Oh, and I like that there will be a mix of races and ethnicities that will naturally occur due to the diversity of our children. So good. But, let me know what you think, whether it is okay or not. I also thought about doing a painting just about E-niner.

I will post the paintings on my upcoming website (which already exists but has nothing on it.) I want to make a limited edition (of each painting) of 40 Giclee prints and sell them on the website. Because of my own daughters’ health concerns, I would like to donate %15 or more of the proceeds from the prints that concern gastrointestinal issues, Celiac disease, Eosinophiloic Esophagitis, food allergies, asthma, and other childhood autoimmune diseases to some organization that funds research on childhood autoimmune diseases. Because of the bulbous heads and uncertainty, many of the pieces also concern mental health issues. This is an issue that is relevant to me due to our extensive talks, my adoration for E-niner, and Afina’s OCD. I could include E-Niner in some pieces and possibly donate a portion of the proceeds from the sale of THOSE prints to an organization that donates money to families that need respite care for their children with mental illness. We could also start an organization to raise money specifically for E-Niner to be used in whatever way you see fit. Once there at least begins to be enough money for him, the organization could grow to help parents who may be overwhelmed by medical costs and by the physical, emotional, and spiritual demands of raising a child with mental illness in a climate that often does not respect or understand childhood mental illness. Maybe I am getting carried away here, ha ha ha ha! I am selling my art pieces and prints, so children might as well benefit them; “Twice Exceptional” children, such as ours.

I haven’t written to you because I haven’t known where to start, since other people may or may not actually read this. I am tired now. My children have been flying around me hysterically while I try to write this, so I am just going to “publish” it now. I hope it is a decent beginning. 🙂

Dear Katrina,

Remember when we shared those journals back and forth in high school? That’s a dumb question. I know you remember when because we just talked about it a couple of weeks ago.

So I was thinking we could move up to the 21st century and share a blog back and forth with each other. Saves postage, hand cramps, and unwanted destruction due to fires or third-parties.

Do you want to give it a try?

If you do want to write to each other on a blog, we have a few options. We can keep it private between the two of us or we can keep it open for the whole entire world to see.

If we keep it open (which is my preference), then at least in my case, I’m going to change all the names of everyone I write about here. I’m going to use this space to be entirely honest with you, and I don’t want to feel like I have to hide things because of the internet. But I am going to go with a certain degree of anonymity. I’m okay with using my real first name, though.

So anyway, let me know what you think. I’ve been blogging for a while and I love it. I think you will, too. Look at how much you’re into facebook!

:)cs