4 years ago today

4 years ago today my life was forever changed. 4 years ago today I was watching my daughter struggling to survive. 4 years ago today a comforting nurse told me to get my family to say goodbye to my daughter, my baby. 4 years ago today I handed my baby completely over to God. 4 years ago today started a journey I wish on no one. 4 years ago today I learned what Cardiomyopothy was. 4 Years ago today I learned to trust in God. 4 years ago today I went into battle. 4 years ago today my new normal started.

Today, I still struggle with the "what ifs". Today every "hello" is precious. Today when she calls me mama my heart beams with pride. Today she makes me laugh. Today, I look in her eyes, and can't help but see Gods hand. Today I see her play. Today I see her with her peers. Today she reminds me of my battle I went through. Today I know that she is worth it.

Today and every day I get on my knees and thank God for choosing me to be her mom. Its an honor and a privilege.

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.

Heart mumbo jumbo and why I can't sleep.

Its nearly 12:30 am. I can't sleep. I am exhausted, but yet when my head hit the pillow about an hour and a half ago (right after the Bachlorette...my obsession!) my mind began to race. I wont go into all of it, but the short story is: Jim and I have gotten an attorney for Tara. She needs additional medical insurance, and we have tried every option. I consulted with a friend who has dealt with special needs kids for way longer then I have, and this is the route she needed to go as well. Its different. I can't say I fully understand everything, and every time I think of it, it makes me mad. We applied to get health insurance thru the ADA with medi-caid or medi-cal. We were turned down. Turns out that if you make over a certain amount of money every year, you can't have a child with disabilities. Well, as it turns out, you can. The state just chooses not to recognize you. Frustrating to say the least. So, needless to say, this is the only route we found. She needs continual health care. And with Jim being self employed, and us having to pay for our insurance monthly on our own, and with the insurance company able to increase your rates 8% every quarter at their will...Lets just say its not getting any cheaper. Our insurance company knows we have no other option...so we have been increased. The max amount every quarter. (hmm, maybe its not the short story of it all!)
So why has this gotten me flustered tonight...well, today Jim and I had a long chat with the attorney (again...the process started about 6 months ago). They have officially decided to take our case on, and today asked for detailed attempts of the first 72 hours before her birth, her birth, and the first 24 hours after she got sick. Its all the emotions on the grid. 72 hours before my water had broken, but nobody believed me. I went in several times before to Labor and Delivery. They kept telling me I was peeing my pants...they said it happens often with women who just "don't know" what it feels like to have their water break...HELLOOOOOO NOT MY FIRST BABY!!! I knew. After reviewing all of the hospital records, the attorneys office now knows too. They believe me. Not because they trust me, but because they saw the hospital records. My water did break prior to delivery. The delivery that when I got to the hospital, they disregarded. Sent me to the bathroom with my husband to pee in a cup. I was in pain. Transitional labor. FYI it hurts. Just a few hours before I was sent home saying my water had not broken, my contractions were braxton hicks, and that I still had 3 weeks before my delivery would happen, they told me I was not dilated at all. The day before in the doctors office I was at 4 cm dilated. I didn't know you could re-gress with that kind of stuff? As it turns out you can't. But yet they sent me home. But with the kind words of "oh, honey you will know when you are really in labor". Yet just a few hours later I was again in that same hospital delivering my daughter in the quiet bathroom with my husband catching my daughter over the toilet. My precious daughter. My 4th child. My 2nd girl. The baby we would call Tara. Tara was born with a perfect heart. Whole and complete in every way. My husband after catching her looking up at me with fear in his eyes saying "honey, I know it hurts, but I am going to need to to pull that help cord behind you so we can get some help in here". The next part was such a blur. My husband took complete and total control over the situation. When the nurse finally arrived she was flustered. She only had 1 hemostat. After talking to herself for quite awhile, my husband finally took charge yet again and said "clamp the baby" She looked at him stunned, then figured out she was the L&D charge nurse and decided she should oh I don't know...do something. She told me to hold my cord. When my husband walked me out of the bathroom several minutes later as we walked by the nurse me still holding the cord her words still ring in my head. "Now make sure you hold your cord up or you will bleed to death". Geez...thanks lady.
then fast forward a week. To the day I will never get out of my mind. The day when my life was forever changed. To September 14th, 2007. The day I was told to say goodbye to my daughter. The day when my worst fears were coming up. When in my dark moments I wondered if they even made caskets that small to fit a newborn. How to have a funeral for a newborn. Who comes. Not all of our friends had met her yet. Her Grandma had not even met her yet, she had not gotten to smell her beautiful newborn smell, to see her piercing blue eyes, or the chubs around her neck. To kiss to most wonderful cheeks you had ever seen. How do you plan a funeral for the most beautiful girl who the world, or all of your family and friends had not gotten a chance to know. How do you tell her adoring brothers and proud sister that she would not come home again? We didn't have to. God stepped in. He told me that very day. It was clear as anything I have ever heard. "She will live". It was not an easy road. Its still isn't an easy road. We walk thru it everyday. Everyday when I give her medication in the morning and at night, I am reminded. When I hook her up to her monitor when I kiss her goodnight and tuck her in. When I tell her how special she is. When I tell her that God is the strength of her heart. (Psalm 73:26 the verse I hung to for over 3 months in the PICU). When I go and give her (and her brothers and sister too) one last kiss before I go to bed, and sit back and adore she sweet cheeks, her chub neck, and her pale/blue skin. When I am in bed asleep, and her monitor goes off letting me know something is wrong with her heart, and I race down the hall half asleep, but getting more awake with every beep I hear not knowing what is happening. Adrenaline kicks in. Its hard to go back to sleep after that much adrenaline has gone thru your system. Yet on a regular, if not daily basis, its my new normal.
You see, this is what gets brought up even more on the days when I am asked to re-live that day. All the moments I can barely remember, yet will never forget. Tonight I write. Not write for you, but for me. To capture some of these moments and feelings. Feelings again that I will never forget. For this, I am bitter sweet. Because, when I re-visit these feelings of despair, anguish, and fear, I can sit back and remember how big my God is, and how he loves me so. For tonight when I tucked my miracle into bed and I told her that God was the strength of her heart, and her portion forever. She said it with me. "Gobs my hawt, an my porpin foweber". Yes baby He is. He is mine as well baby, He is mine as well.

Taras birth story (9-6-07)

For some of my new readers/bloggy friends, I thought I would share Taras birth story since its hilarious. (you know, you can laugh at these things now...)
On Wednesday the 5th I had my normal OBGYN appt. He checked me as normal as I was 37 weeks along (longer then I had kept any of my other kids, I have a very inhospitable womb!). When I say checked, I mean he was IN there, up to his elbow!!! He said I was 4 centimeters, and it would be any day. As any women knows, after they check you, you get some contractions going on, but nothing to bad. I went home, and by noon, I was leaking...stuff. I assumed my water, so I went to the hospital, got checked in by 4, got a nurse, and she said "no, you are just peeing your pants, it happens" "honey, you will know when its your water, you are not even 1 cm dialted, you have weeks to go." SUCK!! I didn't know you could re-gress on dilation....I went home, made dinner for everyone, and walked around with a make shift diaper out of towels, as I was leaking all over the place, literally!!! I gave the kids a bath, and put them into bed like any normal evening.
By 11ish I was trying to go to sleep, but the contractions were just a bit uncomfortable, so I took 2 tylenol and went to bed. At 1130 I was woken up (and woke everyone else up to) with the most uncomfortable contraction. Seriouslly, I was screaming!!! Jim who was already asleep asked if I was ok, and I said "aaah I am in labor, I need to go to the hospital NOW, I NEED DRUGS!!!!!" he said how long how you been in labor "about 10 seconds". Needless to say he wanted me to have more then 1 contraction!! By the second contraction I said "call the sitter, we are going to the hospital NOW" He called the sitter, and by this time I was screaming, banging on the wall, yelling at anyone and everyone, and anxiouslly waiting by the door for the sitter to drive the 15 minutes to my house. By about midnight I told Jim get in the car we are leaving now, I dont care if he is not here!! Needless to say he got there as we were pulling out!! Jim is the most cautious driver known to man, but I made him speed!! He was being so good at first, but it was getting really bad, I was banging on the ceiling, hitting my head on the window anything. At this point, no break between the contractions. I even told jim at one point, "I need to push"!!! As we were getting closer, I told him to call the hospital and tell them to meet us out front with drugs. They asked how long I had been in labor for, and when he told them half an hour, they didn't .....So we pulled up in record time after running every red light, and stop sign with speed. Jim ran in to get someone, and I saw the ER. I was going in, they had drugs and I was going to get them. I was screaming and hunched over "GIVE ME DRUGS!!!" "GIVE ME DRUGS" I was serious. The security guy pushed me thru to the labor side down the hall as I am sure I got stares. As I was walking down the hall I saw a nurse and said "can you give me drugs, anything, I just need drugs, please" I was crying, screaming and begging. No such luck. I get to labor and delivery, and they come get me (I was pretty loud I guess...) and the nurse is telling me to calm down, there is a long way to go. She gives me a cup and a gown, and tells me to get dressed and give her a urine sample. I am screaming for drugs, but she said no pee, no drugs. So I went to the bathroom, and tryed to give a urine sample. I was shaking so bad I couldn't hold the cup. I got Jim to come in to help me and pleaded with him "you need to hold the cup, I keep dropping it, they wont give me drugs til I give them pee". So being the great honey that he is agrees to hold the cup for me. He gets down there, puts his hands there, and without warning, at 12:06 am out pops my little girl!!!!! He catches her, and puts her on the ground, and spins her around trying to un-wrap the cord from her kneck, and pulls the little "help" cord and says calmly "we need some chucks pads and some hemostats in here"
Nurse on the other end "what for sir"
"for the baby"
"what baby"
"the baby my wife just had"
"#%$& WHAT!!!"
Lots of dropping, and words were flying around, but needless to say about 5 nurses were there in about 5 seconds.
They put 1 hemostat on the side where Tara was, and cut the cord, and I sat there on the toilet with the cord in my hand for quite awhile....Lifting it up so I didn't bleed to death. They took the baby, and did what they needed to do with her and I just sat on the toilet screaming still I needed drugs (I felt ripped off!!)
After about 20 minutes they finally come to get me and lay me down on the bed as I am still holding my cord, and I asked Jim to call my mom who was going to be there for the birth. She got there, and the nurses finally called the doctor who arrived about an hour and a half later (yes I am still holding my cord) Needless to say my mom got to see me deliver the placenta, proubably not the same excitment!!!
The doctor FINALLY gave me drugs, and I was a happy girl holding my sweet little 6lb 11oz 19 1/2 inch baby girl with red hair and blue eyes.
She was just absolutely beautiful, and perfect in every way. I counted her fingers and toes, and admired her piercing blue eyes, and her chunky cheeks (yes even at 6lbs she had cheeks on her")I thought she weighed so much more then that she just looked chubby!!
She had perfect little arms, perfect little legs, perfectly round head, and a perfect heart......
Yes, my girl was born with a perfect heart. Undamaged, perfect and whole in every way.
That story will be next week....
Baby girl,
You came into this world like crashing thunder. You supirsed us all with your fiesty little attitude even then. We knew then that we were on your timing, and things were going to be your way or the highway!!! You captured my heart with your sky blue eyes, and your fiesty red hair. You were perfect, and tiny, and I was in love. Little girl, you have been thru some much in your short time here, and I am amazed by your strength. Most people dont go thru this in their lifetime, and you have done it in 2 years, yet you still push on with your fiesty attitude. I can't imagine our family without you, as you bring in a completion that we never had. You tought me how to have patience, you showed us how to pray, You showed us how incredibly generous people and strangers are, and how family unity is so important, but most importantlly you showed us that miracles do happen. I am so proud of you baby, and I am honored that God chose me to be your mom, and its a privledge and an honor everytime you say "mama".
I love you Tara Lorraine.
Mom