How long is never?

This is a long over due post most likely, but I have been thinking about it for awhile. I guess it always comes up, as we get ready for Tara's birthday. A kiledescope of emotions comes about. Its been nearly 4 years since Tara was born, then a week after her 4th birthday, it will be 4 years since my life was forever changed. Since my "world" was shattered, and my life, and my normal that I knew before was never to be again. I live now in my new normal. Its not a bad normal, but a different normal. I often (not as much as I used to) get the question "what is Tara's health like now?" Well, the skinny...It has not changed. Her heart function is exactlly the same as it was the day we left the hospital 3 mos. after she got sick. Tara however has "learned" how to deal with her heart, and the common cold doesn't *always* send her to the hospital anymore. I then get the transplant question, or the surgary question. You see, those are the questions that are not easy to answer. Even if you have the same faith as me, its a hard question to answer. Sometimes people don't understand that I KNOW God is going to heal her. He doesn't make promises he can't keep. He told me that he would heal her, and I will take that to the bank, every day. In Deuteronomy 31:8 it says: "God is striding ahead of you he is right there with you; he wont let you down, he wont leave you. Dont be intimidated, don't worry." he wont leave me. Ever. Never. The kids were playing the other day, and I overheard a conversation about the word never, and Jake told Tara: "Never is a really long time, huh mom." I of course said yes, but then that question came to me later in my quiet time. How long is never. Is it 100 years? 10 Years? Or is it just the 4 years that my sweet girl has been with us? No, in actuallity Never is NOT a long time. Its doesn't end. Websters even says: Not ever: at no time; not in any degree; not under any condition. Not under any condition will my God ever leave me, he is right there ahead of me, striding ahead. Have you ever walked on the sand from your car down to the water, and when you walk its hard, sand is never easy to walk in, I always like to find other "footsteps" to walk in, it makes it easier to walk in the sand when someones "strides" ahead of me. God does that in my life, all of it. So when do I feel like he wont take care of Tara? Never.

Whopping Cough

Its been a really hard week...really hard. Jim left Sunday, 6 days ago now. It does not get easier kissing my husband goodbye at the airport no matter how many times I do it. It still sucks. A lot. However my tears were quickly turned into super powers as by Monday night I had 2 kids sick. Tori with the stomach flu (better now), and Tara with the "unknown". Low O2 sats, fever, just funk. I knew something was brewing. By Wednesday fever still there, and a cough had come with it, my nights were getting longer. Last night was epic. Not in a good way. It was a bad night, bad like I have never had to experience at home with my sweet girl. Tears, and coughing spats that would dip her O2 into the high 70's that would last for 1/2 at least. When she would finally "break" from the spat, tears would fall, and she would ask to go to the "egg doctors" (Huntington Memorial is the egg doctors, she always asks them to make her eggs there, and they do.) I want to keep her home, I so want to keep her home, because in the day time, she is good, well better. Yesterday she was diagnosed with Whopping Cough. A vaccine prevented disease. While she has had the vaccine, she is immuno-compromised so still got it. While I have always been "pro vaccine" since Tara I have been even more. Frankly it pisses me off. Tara got whopping cough from someone who was not vaccinated. If you choose to put your child's life at danger, so be it, your choice. HOWEVER, when you then put my child's life in danger, it gets personal. So parents who choose not to vaccinate, this is for you. Until you see your child laying in the hospital fighting for their life, you may never get it. I don't necessarily want you to vaccinate for your kids, I want you to vaccinate for my child. My child who had nothing to do with your stupidity. In the long run, most likely it will never be your child who fights for their life from getting a preventable disease. Most likely it will be a immono- compormised child who did nothing to you, yet you choose to put THEIR life on the line. How dare you.
PS any anonymous comments will be deleted. You are welcome to express your opinion, but if you have one, have the guts to put your name, after all, I did.

Crutches and Bear

Today was a big day. Big. Huge. Hence why I am still up at 1 am. Ok, maybe not (I am just a night owl). But none the less. A big day. I have moved Tara to her own room SEVERAL times before. However I have always kept the crib in my room (we had 2). Just in case. In case she is sick, in case she is just off, just in case. However for the majority of her last nearly 3 years of life she has been in my room (lets just say she has either been in my room or the hospital!). Well, about a month ago I moved her. To a big girl bed. Its not a crib. In her own room. She loves it. She likes sleeping in there. She was excited to be in there. Last week I got an email from a friend. She said someone was looking for a crib for a house for battered women. A women came in and had a baby. I didn't even think twice and told them I had one. They came and picked it up today. Today I have a large empty spot in my room. Next to my bed. Where my baby has slept since she has been home from the hospital. Today, my crutch was taken. My If she is sick she will be closer to me spot. It will be filled with a fake tree (its a big room, it needs a tree). I no longer have a bed in my room for my baby. My crutch is gone.
This sweet little bear has been on her crib since my sweet little girl came home from the hospital. Sweet isn't it. This bear has significance to me. Maybe not to Tara (she did pose with it though!) When Tara was VERY sick one of Jim's friends came to visit us at the hospital. His name is Chris. She was in Huntington Hospital for maybe a week. My baby was 2 weeks old (she was a week old when she was admitted to Huntington Hospital). My baby that nobody really got to know when she was healthy. My baby that I was so proud of, her beauty, and even though it was hard to see her like that (with tubes, lines, swollen etc), she was beautiful to me. She was my beautiful girl, that I wanted to show off, but people who came to see us weren't really coming to see her. They were coming to see us. To make sure "we" were ok. I understand, and am sooooo grateful for everyone who came to bring us meals and love on us. We did need it. Looking back I think it was a type of beauty that only a mother can love. Tubes and lines don't scream beautiful baby. FYI. :)
When Chris came that day he brought us the bear. Wrapped up super cute (thinking his wife has something to do with it!) with a card. The card that said "Congratulations on your new baby" Love Chris (and family who I am leaving out for privacy...I didn't tell him I was going to blog about it! Its only fair!) Chris does not know what that card, and this sweet little bear meant to me. Someone was coming to see her, admire her beauty, and congratulate us on our new baby. Chris came, brought us a meal (Mexican I think?) and a present for our little girl to love on.

She may not hug and kiss it every day, but every night as I went to sleep seeing her crib in my room, and the sweet little bear attached reminds me of the day when friends came. Came and loved on my girl, congratulated us on her beauty, and meant more to me that day then he ever realized.

So tonight I go to sleep without her crib in my room with the sweet little pink bear attached to it staring at me as I drift of to sleep. Thank you Chris. Thank you for lifting my spirits that day nearly 3 years ago. You made me feel normal. That I had a normal baby, that my normal baby was beautiful.

PS. The bear is now attached to her big girl bed. To someday remind her. Remind her of her beauty and that people cared.

Why I am convinced I need a seperate "label" for hospitals.

So, last week when Tara was admitted, I realized that I did not have a "label" for just hospitals. I had one for Parks and Hospitals (funny, not sure what that was all about, but I will need to re-read that when I am not exhausted). So as of today, I will make a new label...for just hospitals. Why not...Tara after all has had LOTS of hospital trips. We also LOVE Huntington, so I might want to say something about them...I would label those "hospital". Tonight's post. I will label hospital... Why, because I spend the better part of today in the hospital.
Now, onto the story....or the saga, as life continues, and I swear my life will be on an ABC comedy show at some point.
So today around 1ish pm. As I am dealing with a sick little boy again (Jake, just can't seem to kick the virus Tara had), Elijah comes down from his room when he was "cleaning"...and we had a conversation that looked like this...:
Elijah: "hey mom, there were some bee bees in my bed last night, and I think one went into my ear."
Mean mom: "bee bees don't just go into your ear when you are sleeping, is there something else that you need to tell me?"
Elijah: "geesh mom, why don't you EVER believe me when I tell you something" (said with a total attitude, as he is 12 and knows EVERYTHING already, you know, fyi just in case you didn't know)
Mean Mom: "well, if there is something you would need to tell me, I would prefer you tell me now before I find out later".
Elijah: "mom, I told you I think it just went in there when I was sleeping"
think is now the key word that I hear, as I have heard this "saying" before when he was lying...
Mean Mom: "Elijah, I just want to remind you what happened to liars in bible times, and honey if I find out you are lying, I will not be opposed to those types of punishments."
as we walk over to my bible, as I am not totally sure what happened to liars, but I am going to find out!! (which is also why I labeled myself mean mom...)
Elijah: "fine, I stuck a bee bee in my ear"
Mean Mom: WHAT!!!
Elijah: "well, I thought I could get it out, but when I stuck my finger in my ear to get it out, I couldn't grab it."
Mean Mom: "let me see"
as we walk over to the kitchen to get my flashlight...and I see sure enough, a small green bee bee...shoved into his ear.
Mean Mom: "yes, there is a bee bee in there, call your Dad"
as at this point, I went to go to the bathroom...to wonder, and talk about my sons stupidity with God, myself, and the spider I found in the tub. Probably not the brightest move, but it worked.
So I talked to Jim. Told him how far it was shoved in there, and let him know I would be taking Elijah into the Doctors when they opened back up again at 2.
Mean Mom: "Elijah, were are going into the doctors, we are leaving in half an hour, DO NOT touch your ear. Leave it alone. The doctor will see if they can get it out. Put your hands on your head and leave them there."
Elijah: "GEEZ, I don't know why you need to treat me like a baby"
again, the spider and I had a chat....
when I was finished chatting with the spider I came out of the bathroom to find Elijah's finger IN his ear with his sister "holding" his ear out.
Mean Mom: "ELIJAH does DO NOT touch your ear mean anything to you?
Elijah: "I am not touching my ear, Tori is touching my ear, I am touching the bee bee".
I believe this is when my mind went crazy and I starting thinking of all of those stories of children being locked in basements, and me thinking how horrible those parents were, but me also wishing so desperately that at this exact moment, how I wish we had a basement.
Don't call CPS...we don't have a basement.
Needless to say, we left for the doctors early....
When they got there they looked at it. Said, "wow, that's impacted, he must have really shoved it in there" as he chuckled just a bit.
Mean Mom: "I know Kyle (there only child and 2) is cute and cuddly right now, but I just wanted to let you know, that in 10 years, this situation might not be as funny to you."
He then said "Ms. Carlson, you should get your PA (Physicians Assistant). It would save you a lot of money"
I agree...as I am fairly sure that my co-pays alone pretty much keep those office doors open. But alas, I am nice like that, (and don't have time to go to school) so I choose to clothe his child, and pay for his mortgage.
Dr: "well, do I even need to tell you whats next Ms. Carlson"
Mean Mom: "Huntington?"
Dr: "see, you should get your PA"
Mean Mom: "yup, can you also call and get a referral for an ENT just in case the ER can't get it out"
Dr: "when you get your PA I will hire you here"
Mean Mom: "no need to pay me, just give me back all my co-pays"
Dr: "well, I can't do that all upfront, might need to work here for a few years to earn them back"
$35 co-pay 4 kids...I might need to work there for life... :)
So off to Huntington...
They sent us to the "fast track" area. I was sooooo excited. I had heard of this "fast track" rumors I was convinced...or like a mirage, you see it, but can never get to it. Rumor has it, you can get in and our of the treatment area in 20 minutes...I was excited...So it was our turn, my mirage was coming true!
The nurse that Tara had last week saw me...she greeted me with a hug (thats not bad right?) she was really great last week...Vanessa. She then told the "fast track" doc..who is actually a PA (which I found funny) "treat them good, they are my friends".
so he came in the room with us...right away...no delay at all!! Looked in Elijah's ear, and said, "well, I hope I can flush it out, if not I will try to "pull" it out, and if all else fails I will suck it out".
Well, in short...He could not flush it out.
He could not pull it out.
All else failed, and he tried to suck it out.
as it turns out there was a 4th option he did not mention.
We left the ER fast track area...my mirage was gone. We were put into a "normal" room. Our 20 minutes were up. They called the ENT. Turns out she did not want to come out on a Friday night for a 12 year old with a bee bee in his ear.
We left the ER...about 2 hours after we left the fast track area.
We left the ER with a bee bee in Elijah's ear. His right ear.
We see the ENT Monday am at 9 am. I am not sure what she is going to do. There is talk about "anaesthesia" and "surgical". We got started on antibiotics today. For a few reasons. 1. not sure how clean that bee bee was... and 2. again with the talk of "surgery" and things. 3. there was a lot of other things "shoved" into his ear today... 4. the flushing most likely got water stuck behind the bee bee.
So, with the bee bee in there, he can't hear from his right ear...Great. Just another reason why he wont listen to me.