Archive for the ‘Uncategorized’ Category

Making Your Heart Sing   1 comment

My husband and my oldest have a lot in common. Yeah, yeah, they share genes. And they look a lot alike. Similar build (long and skinny), similar coloring. It is, however, beyond skin deep for them.

They have a passion to create, they can spend hours with paints and pencils, paper and a head-full of ideas.

They also LOVE a neat house. While all of the above things are integral to who they are, to understand them on a deeper level you need to know that they are neat freaks. Yep.

And they are stuck with the three of us who, ahem, don’t have that “problem.”

Before you pity them too much, we have collectively reached a new level of neatness and organization in our home. Why? What has brought about this earth shattering change? We had a Realtor come over. As we explore what we need as a family, freedom and independence for Fawn has come up repeatedly. So, we are prayerfully (as in HELP!!! Oh, please HELP!!) considering selling our home to find one that presents less challenges, has a bedroom for each little girl, an office, space to entertain, and a price we can afford. Ha! Did I mention we are idealists?

So, all of this to say, my husband and my oldest? Their little hearts are a-singing! Our home is neat!

Posted January 11, 2011 by comomma in family, Uncategorized

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Wandering   1 comment

So, I left you all Jess wondering what happened next, right? We had no answers other than the fact that my daughter was overly dramatic and depressed and generally making all of this stuff up so that more people would pay attention to her. Whew.

While I did internet searches on horrible diseases, and took her to a chiropractor, a woman, a dance mom, emailed me to ask how Fawn was doing. You see, she was an OT and had watched her fall to the floor like a rag doll at the dance studio and knew something was really wrong. When she heard the above “answer,” she emailed a children’s hospital and a pediatric specialist to get their opinions. These were both out of state and completely unknown to me. And what, pray tell, did these strangers from two different states have to say? Well, they said that they had each had a patient with similar symptoms and they were eventually diagnosed with POTS. I had a diagnosis within two days of this dance mom emailing me, now I just needed to have some doctors agree with me!

 

Did I mention how awesome our pediatrician is? No, really, she is. I called ten minutes before the office closed and left a message. She called me 15 minutes after the office closed and said something along the lines of “I just looked this up on the internet, I think we have a diagnosis! I am going to make some calls tomorrow to see if I can find a doctor who can help.” Really.

 

Now at this point I have to say something else. I don’t believe in accidents and stunning coincidences. I believe this was GOD. He caused a mom who didn’t know me well to care and to reach out and to find some answers. And a doctor to believe me. And the next day? Our pediatrician made two phone calls, and the second one was a doctor who not only knew about POTS, but “collected” patients. And so, next evening (when she was not actually working at the office, but working for us) she called to tell me that she had an appointment and some interim instructions, and that this doctor also felt like POTS was the answer.

Posted January 9, 2011 by comomma in family, Uncategorized

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A Bird   Leave a comment

When I was a child I was fortunate enough to have cousins close in age, as well as friends that lived in the neighborhood of my cousins. One idyllic day we were wandering the neighborhood (this was before the lockdown that is our current society) and talking to the neighbors. One neighbor had a lovely bird. I can’t remember what kind of bird, but it must have been impressive because we stayed and talked about that amazing bird to the woman in the yard. She told us all about it. It was sitting in the tree having a wonderful time while she gardened. Well I assumed it was having a wonderful time. Perhaps it was weeping bird tears for the great sky it could only see but not fly in?

We were utterly fascinated and so excited to share! the! news! Evidently not all of us were on the same page.

We raced back to the house and proceeded to tell the story:

Childhood Friend: And the bird’s wings were pinioned, so it couldn’t fly!

Me: Yeah! And its wings were clipped so it couldn’t fly!

Cousin: What’s pinioned? Why couldn’t it fly?

Posted January 8, 2011 by comomma in Uncategorized

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Two things (maybe three)   Leave a comment

First, my husband said that my title “Spoons” was unnecessarily cryptic. I was referring to this.

 

Second, I have decided for my sanity, to nickname my girls. That way, I can refer to them more specifically. The nicknames are kid-approved and are (drum roll, please, my brilliance is underwhelming):

Fawn: 12, chronically ill with dysautonomia. Quiet, caring and a peacemaker, she is always ready to beat you play a game with you.

Robin: 10, busy and always moving, sensitive and caring, she’ll care for your child or nurse you when you are sick.

Chipmunk: 8, loud and hates to be ignored, she loves to do things as quickly as possible and loves to rush to help you.

 

Third, for posterity and my own sanity (which is questionable, I admit), I am going to chronicle Fawn’s story. I am working on it at the moment. I want to make sure I have it right, so that my girls can read it and remember, because, SOMEDAY, this will be a memory. I have to hope.

Posted January 5, 2011 by comomma in family, Uncategorized

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Not complaining   1 comment

Evidently, I have needed to get some things off of my chest. But not on real people, of course. They have responses and answers and questions.

That being said, I want to give a shout-out to Brie cheese. And to apologize to that cheese.

Dear Mr. (Ms.?) Brie,

I must apologize. You were not greeted enthusiastically in my home. I am sorry that I was the only one truly happy to see you, and the only one that will be saddened by your departure. In the meantime it has fallen upon me to spend as much time with you as possible. So you won’t be lonely, of course. Your friend Edam is coming next week and I don’t want you to be jealous of how he is treated.

Sincerely,

Definite Maybe

Posted January 4, 2011 by comomma in Uncategorized

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If I were truthful   1 comment

If I was brave enough to overwhelm people with the truth, if I was courageous enough to be (forgive me, I’m going to quote Christians) “real,” I would answer the question of how we are doing.

The truth is, my daughter rarely sleeps anymore. Her head hurts too much to let her. We’ve helped her maintain her weight, although the doctors keep harping on how skeletal she is. Last night she cried, and I cried with her, because I asked her what she wants to be when she grows up and she said she didn’t know, because she doesn’t know if she’ll be able to do anything, even college. Today her eyes are accentuated by the bruised coloring underneath them. It is getting worse and so, again, I am leaving messages for doctors.

I would tell you that she doesn’t want to do any appointments for awhile. I can’t say that I blame her, but it doesn’t stop me from wishing I could take her somewhere that she could get a solution, instead of another thing to try and hope.

If I were truthful, I would probably cry while I told you all of these things. I would look away, because I can’t stand crying in front of people and I would crumble if you touched me. But what will I really say? I’ll tell you we are the same, we are fine.

Posted January 4, 2011 by comomma in Uncategorized

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Spoons   1 comment

I have already broken one of my halfhearted resolutions. I cried for the third day in a row. Life is hard. And it isn’t fair. Not even a little bit.

February will be the one year anniversary of the downward spiral of my daughter. She isn’t dying. Her condition isn’t life threatening. I feel like I need to apologize, we are fortunate. We get to keep her (as far as anyone can) for now. Knowing all of that, life is still hard for her. Standing, walking, eating, sleeping, they were all easy for her at one time. Now they are WORK. How do you sleep when you always have a migraine? How do you eat when you are always nauseous and in pain? How do you walk when you have about two minutes before you lose your vision and hope you can sit down quickly before you fall?

When I look in my girl’s eyes, I want to tell her to hope, but instead I pray for strength. Courage. The ability to keep singing in the crap (or is that storm?).

How do we know if she is part of the 80% or the unfortunate 20%?

Posted January 4, 2011 by comomma in Uncategorized

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