by Sarah | Aug 14, 2009 | All About Erik, All About Molly, Autism, Fatherhood Fridays
See Part 1 by clicking HERE
I never knew or met anyone who looked like me. Someone who shared certain traits. The connection was so amazing. I could look into her eyes and see myself, no longer alone. She was very special to me, in a way that most people would find hard to understand. I found redemption for past failures and a bright future was suddenly ahead of me.
Around 3-4 months old, Riley started crying after she ate. At first, we just thought it was indigestion, it would pass. But it didn’t. The crying soon turned into screaming, her muscles were tensed, and she was unable to be soothed.
A trip to the doctor soon turned into multiple trips, with fluoroscopes, tests, poking and prodding at my/our little girl. We were told that it was a simple diagnosis, silent acid reflux and it could be corrected easily with medication and close monitoring. That was okay, but she suffered for around three months in terrible pain and anguish, unable eat without it hurting her.
As she was getting better and able to eat without painful consequences, I started to notice that she was just not….right. She was now very quiet, withdrawn, never smiled, and physically she was wasted. Her doctor appointments were indicating no weight or height gains, even having lost weight at times. Her hair was lifeless and dull, eyes were glassy most of the time, and her only method of communication was crying in distress. She was drawing herself into a shell that neither my wife nor I could penetrate.
All of this time I was in complete panic mode. I finally had what I had been needing all of my life and she was slowly, painfully wasting away. Babies are supposed to be chubby and full, but she was bones and flesh. My wife and I supported each other as best we could, but I anguished terribly inside. I wondered if I didn’t get help for her soon enough, or if I failed to see the signs and in turn failed her.
I can’t explain how it feels to be so alone in the world, not really connected to anything. How many people take for granted that they have mother’s eyes, their fathers’ hands, that little half smile that started at the corner of their mouth just like their grandfathers in their youth. I had none of those things until Riley was born. Now I was in danger of losing that. Many sleepless nights, staring at the wall. What was to become of her, and me?
I know how selfish it sounds that my happiness was linked to hers, but that’s the way it was. For a while, we didn’t really know for sure that she was gonna make it. We met with other doctors, and then a geneticist. The geneticist was really able to help us with our fears and concerns. We didn’t like all of the answers, but he was honest and straightforward.
We bulked up her milk rations and worked constantly to improve her state of mind. One of her issues was revealed to be an oral aversion. She didn’t want food, she wouldn’t talk, and she would not let anyone look at her teeth which by this time were causing her some discomfort as they do all babies. But she never showed us or told us if something hurt, if she was happy, if she didn’t like something, nada. Zip. Nothing. The scariest for me part was not knowing if she was really in there or if she was gone forever. She looked like a little zombie most days. My heart ached and weighed three tons.
After several months, the added nutrients began to work, her hair started growing again, and had shine & luster to it. Her little body started to fill in just a bit, she would still be a skinny child given her parents, but we were okay with that. Anything but the bones that cast shadows. She was still withdrawn most of the time, but we began to see signs of life. She began to show interest in things outside of herself.
She could complete ten of the wooden type puzzles with letters, numbers, and shapes, at one time.
Amazing.
She didn’t so much play with her toys as she did organize them with razor sharp straightness. She walked at just under a year, which we felt was pretty good considering her delays. She walked on her tiptoes a lot, my wife thought she would become a dancer. She became frightened at loud sounds like motorcycles, hot rod cars, loud bangs or crashes, and would often cover her ears. She did like for the tv to be louder, so it basically drowned out other noise. It was difficult to get her attention; sometimes it seemed as if she were somewhere else. But we were slowly getting her back. I thanked whatever higher power that heard our pleas. I also began to relax, uncoil, and enjoy her.
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I am very grateful today is Fatherhood Friday and that Archie had stepped up with a post because I’m sick as a dog, and so are the girls. I will try to be back tomorrow – if not in time for my Weekly Winners – but there are no guarantees. I feel like death, just ask Archie.
by Sarah | Aug 13, 2009 | All About Kennedy
We are a full sick house today. It started last week with me having an upper respiratory infection. Just as I got better, Riley got the sniffles. Then yesterday I got them again. Runny nose, head congestion, a full blown head cold.
Today the part I always always fear happened.
Angel was congested when waking up. And unlike Riley and I – she was coughing.
We have been blessed (and damn lucky) that Angel has not yet suffered any serious illnesses since her CF diagnosis 2 years ago. That doesn’t stop the fear that grips you with every illness.
How fast this cold hit, the fact that she has a fever and is coughing worries me more than my own illness or Riley’s. She was fine when she went to bed last night, and this morning is not the same. Lethargy, grumpiness and a need to be on my lap all the time…it’s all causing me to worry before I should worry.
Once I knew there was a fever I did what I was supposed to. I’ve called the pulmonologist and spoken to a nurse. I’ve put her in her chest compression vest and done a run on the nebulizer. I’m waiting for word back from the doctor now.
I’m terrified of the Big One. The first time we end up so sick and in the hospital, her little lungs fighting harder than any of us to get rid of something. Every sniffle brings it back up, every cough tugs at my heart.
So in the mean time I’m in the steam room (the bathroom) trying to declog my own sinuses and the girls…because I’d like to be able to care for my baby without my own pain getting in the way.
by Sarah | Aug 10, 2009 | Photography
I took this picture yesterday and it was just too perfect not to post. I’m simply calling it “Blue”.
by Sarah | Aug 9, 2009 | Photography, Weekly Winners
Weekly Winners is the brainchild of the wonderfully Sarcastic Mom, Lotus
All photos were taken with my Canon Rebel XTi. No editing on any of them except for size.
This week was filled with visits with family, sewing for Christmas presents, storms, and a “snake bite”. Pictures in order:
1. 3 cousins all w/in 2 years of each other. It was “Serious” business, donch know?
2. The girls climbed up onto Papa’s lap of their own free will for a story – first time it’s ever happened!
3-6. Sewing projects. My fav shots of the week.
7-8. Bad storms on Tuesday. These pics are two fronts colliding to bring the second wave of massive storms.
9. My “snake bite”. Was playing with the dog and got my arm caught in the choke collar. It hurts like hell, and Archie and the girls decided it looked like a snake bite!
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by Sarah | Aug 7, 2009 | All About Erik, All About Molly, Fatherhood Fridays
No, really, they don’t. I don’t personally know any real men, but, I digress.
This is the story of how I found myself – finally – at the birth of my oldest daughter.
My early life was fraught with failures and disappointments. I never gained self esteem. As early as 1st grade I have memories of not liking myself, although I have a feeling that it was always there. I suffered from crushing depressive episodes and anxiety coupled with OCD tendencies (read: anal-retentive). I was an adopted child and although my family was always loving and caring, I felt empty, like something was missing.
And it hurt.
People mostly stayed away from me, I think they saw the storm clouds over my head. As a teen and a young adult, well….less said about that, the better. I discovered the joys of alcohol during these years, and to say I even wouldn’t like myself is redundant because we’ve already established my self image/esteem problems.
I tried a lot of different things to fill the void, but nothing worked. Broken relationships and marriages, ruining friendships, alienating family, etc. I was always hopeful in the back of mind that I could find peace someday, even though externally I wasn’t positive about it.
Cut to 2004. My marriage was doing well, we had our bumps but who doesn’t? We had halfheartedly tried to have a child, but nothing happened. We were content with our small family. I might have been a bit uneasy, but I was learning to live with certain things. In September of that year, my wife had not been feeling….right. She tried a pregnancy test on a whim. Surprisingly, it came up positive. We were going to have a baby!
I felt that I was ready, but still nervous. My mind raced with the thought of being a father..
Was I ready? Would my child like me? Who would they look like? How am I gonna afford to pay for this? It was a long wait for the baby to arrive.
I was in for the whole delivery scenario, but it made me extremely anxious. Finally, the baby came. After the nurses cleaned her up a bit, I got to hold her. She was tiny. She was red and wrinkly. She was crying non-stop. She was beautiful. I thought it warm in the room and I was sweating. I wasn’t sweating, I was crying.
My wife and I had gone through the whole name thing, and we wanted something that fit with our last name, flow so to speak. I came up with the one that stuck, and it felt right. She was my pride and joy, and I had never been happier in my whole life. Finally, someone who shared flesh and blood with me. I was still uncertain at times, but it was becoming easier for me to be natural instead of forced. She slept either in the crook of my arm, or on my chest. I got her first smiles. I gradually began to realize that my emptiness was slipping away, replaced by the sweet little girl that actually was starting to resemble me.
Life was never better.
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Archie is my husband, father to my children, and as you can see a very caring one at that. He’ll be making a few guests posts – and this is just the first in the series. He’ll talk more about the “first blood relation” feeling, what it was like for him as we gradually realized something wasn’t ‘right’ with our baby girl. All from his point of view. You’ve heard mine often, I thought it would be nice to hear his as well. The posts will be probably once a week – so long as he keep them coming and you show him some love…so please comment for Archie – he’d love to hear your thoughts – and it will help bring him back!!
by Sarah | Aug 6, 2009 | Crap, Random
You thought you’d get a post from Mr. Perfect today, didn’t you? Well, you aren’t that lucky…he’s still writing. So instead you get the fun random bullets…
* I’ve been sick the past few days. I feel ‘okay’ in the morning and it starts to hit by about 1 every day. Headache, sore throat, muscle aches, grumpiness, and feeling clammy-like. After two nights of putting up with me, Archie wants me to call the doctor. I did and go in today. I’m sure I’ll be told it’s just a cold, but it’s just as well to go in w/ the sore throat and a CF babe in the house.
* Remember the Saga of the Big Toe that started in January and I thought was done in April with a big fat cortizone shot? Well, it’s not. After enough distractions and pain killers (thank you, gall bladder), I was able to ignore it for 3 months – but the pain is not gone. It gets worse when I wear my sneakers for more than an hour or two. So, I go back to the podiatrist next week. It’s a good thing I like that man with how much I despise feet….
* Today I finally got off my butt and scheduled doctor’s appointments I was supposed to a couple of months ago. My podiatrist for one, I called the OBGYN for my 2 year check (hooray for no parts, checks get farther apart) – only to find out I’d already scheduled it months ago…and I got Riley’s appt with her geneticist set again.
* I’ve been sewing like mad – well, previous to my sickliness. Trying to get Christmas presents done for the girls. It involves working my poor sewing machine to the bone, but will be worth it…if I can restrain myself from putting the clothes on the girls prior to Christmas.
* Brandon starts 6th grade on Tuesday. Tuesday! I can’t believe summer is over already…but I’m relieved in a way. We seriously need the break from each other.
* The girls old OT called today just to see how they were doing. I thought that was so sweet of her. It was good to talk to her again briefly.
* Had one of my ex’s actually act surprised and hurt that I ignored his friend request on Facebook. He sent me a message asking if I still hated him that much that I wouldn’t friend him. I didn’t bother replying – but have to say that I don’t hate him…hate is such a strong word..but really, I don’t LIKE him enough to friend him…anywhere.
* July was a great month of visiting family…and I’m sad I wasn’t able to get to Buffalo to do the same. Hopefully next year I will get there.
* Still wishing I could make it to Type A Mom. No sign of sponsorship in sight, though…so that may be another I miss again. Maybe next year.
* Have an editor actually reading my novel now. Here’s to hoping she loves it and you’ll be looking at the latest published blogger here soon 😀
That’s it for now. Hopefully soon hubs will finish his blog post for me…and yes, I’m putting this out here to help nudge him toward it 😉
I can’t explain how it feels to be so alone in the world, not really connected to anything. How many people take for granted that they have mother’s eyes, their fathers’ hands, that little half smile that started at the corner of their mouth just like their grandfathers in their youth. I had none of those things until Riley was born. Now I was in danger of losing that. Many sleepless nights, staring at the wall. What was to become of her, and me?
