So. I’m here.

I’ve stared at the little blinking cursor for a couple of days and I’m not sure what to say.  So I guess I’ll just type for a bit and see what comes out.  Maybe I’ll leave it up for a few days and see if it feels right before hitting publish.  I’m sure it will ramble….

I know I’m long overdue for an update.  Teagan has been very sick, he’s been through what feels like a living hell the last few months.  I cannot imagine anything worse than watching our child suffer.  While I’m not ready to go into specifics or exactly what Teagan is dealing with, it has been a long road filled with ER trips, specialists, a stay at Children’s Hospital, MRI’s, EEG’s, bloodwork test after bloodwork test, evaluations and just a never ending schedule of appointments, sometimes 4-5 a week.  He’s been a very sick little boy and we’ve seen things we’d never thought we’d see, we’ve tried to comfort him and love him and help him any way that we can.  It has been challenging, we’ve felt success and we’ve felt failures.  We’ve felt guilt and anger and frustration and grace and hope and fear and everything in between.  I would give anything for all of this to just go away, to wake up and start fresh.  Anything.  Anything to have him back just the way he was before.

I will be honest, it is taking a toll on all of us.  Emotionally, physically, financially.  Ty and Taryn have been brave and scared and understanding and patient and impatient.  We are tired and stressed and it feels like we ride a constant roller coaster of ups and downs and making decisions and opening our minds to things we never thought we’d face.  We’re having to discover a new level of communication in our marriage and with our children.  We’re having to create patience.  We’ve had to compromise more than we ever thought we would.  We’ve heard some scary words come into our home and the mere presence of them made us go numb.  Thankfully, we’ve ruled many out and have kicked them to the curb.  We are being forced to open ourselves up to a different way of living and we are being forced to give up many things and rethink everything from medicine to how we live and what we are able to expose him to and the list just goes on and on.  And it is overwhelming to face those things and changes all at once when all you want more than anything is for your little one to be well.  His health would take a hard fall and we’d come up swinging for him, even when the doctors told us to go home and wait it out.  We won’t be complacent.  We won’t stand back and watch him deteriorate.  Doing nothing is not who we are.  It’s not what we do.  That was never an option and it never will be.

We looked up and summer was gone and school is starting.  The last summer with Taryn at home and we feel we’ve missed it, even though we were right here.  So much has happened this summer, our girl turned 5 while Teagan was in the hospital, we prayed and prayed that one of Teagan’s good days would fall on the day of her birthday party, and it did and we celebrated together as a family.  We put on our smiles for her and we took that day.  Ty found a love for football and working out, we sent him on a trip to my mom’s house just so that we could see him  be happy and give him a break.  It’s been a tough summer for him as he’s old enough to understand.  The rest of us gave up our vacations, our plans for a new puppy and I turned away some amazing work opportunities, so that we could do everything possible to help Teagan be well and handle the daily challenges thrown his way.  We’d do anything for him to be well but we are also mourning the loss of a sense of normalcy around here.  There have been good days when his symptoms are less pronounced and he walks and talks normally, laughs, plays and runs and we just soak it all up.  And there have been dark days when he doesn’t that we never want to remember or see again.  We read and researched and asked questions and stayed up all night to talk it all out and find the best course of action.  We asked clients and friends and family for patience and prayers.  And we hit our knees.  We prayed.  A lot.  For guidance for those caring for him and most of all, good health and a full recovery for a little guy.  We pray for patience and understanding and strength to be all that each of our children need us to be.  I believe there is purpose in everything and have struggled with that. “Why this”?  “Why him?”  “Why now?”  God, why are you putting us here, what do you want us to do with this?  There was a time that we thought hurricane katrina would be the hardest thing our family would ever go through.  How silly that seems now, there seems to be no worse hell than watching your child suffer.  There are those so much worse off than him, and we have to realize, we are no different than those families, bad things can happen to us too.  And we live with that fear.  We have been judged, quietly and loudly, by doctors and friends and strangers and old ladies standing behind us in line at the store.  Our lives began to be something we hardly recognized. Will he fully recover?  Will our lives go back to normal?  We do not know what the future holds for him just yet or where he will land when all the dust settles, but we have some improvements and we have some hope.  And that is something we are holding on to.

So, why am I not blogging?  I also have reservations about airing out his weakest point in life for the world to see, I want to be respectful of him during this time.  Secondly, we now know the pediatricians responsible for Teagan’s care since birth made many mistakes from very early on in Teagan’s life.  They missed and messed up some big stuff that was right there in front of them.  They failed him.  His old pediatricians know who I am and what I do and I feel strongly that they have lost the right to know how he is doing.  And third, as quickly as I report he is doing better and things are improving, the rug gets pulled out from under him and I just can’t explain it all over and over again each day.  It’s hard enough to live it once.  We are proud of him, we are not ashamed of what he is going through and we will help him through whatever comes his way so that he can be the best that he can be.

We are so thankful of all the help and wonderful people life has brought to us during this time, my clients and mommy friends who have continuously fed us over the last two months and provided childcare for the older kids and brought cards and goodies that made Teagan and the other kids smile.  Our family who is always so supportive.  Our friends that have shown up when it really mattered, we are so thankful for them.  Wonderful photographer friends who sent us help and a housekeeper and even a drive-by hug.

Especially Marti.  Marti is a blog reader and an OT and has been Teagan’s biggest advocate, refusing to give up on him, showing up and going above and beyond every single day to help us get him well.  She is clear and thoughtful and intentional and persistent and thankfully, very stubborn.  All good possibilities have originated with her and we simply cannot imagine going through all this without her at Teagan’s side.  I cry when I start to think about where he would be without her, I can’t let my mind go there.  He sees her and he smiles, he knows she’s good people.

I’ll be back to blogging about our everyday lives eventually, I know that I will, I’m just not there yet.  I miss this place, I miss it so much.  I miss the normalcy that it brings.  I miss my camera and connecting with my clients and seeing beautiful moments.  I miss photographing my family and documenting our day to day.  It’s something I’ve been struggling with, because looking through the lens I see the illness, the sadness and the reality of a life I hardly recognize.  As they say, the camera doesn’t lie.  I finally took Taryn, my toughest subject and challenge, out for a few photos of just her because I needed to see for myself if I could find something beautiful and meaningful through that lens again.  I needed to know for myself and for my work and for my clients and my career.  And thankfully, I did find something beautiful.  She offered me grace and something so much more beautiful than just a photograph.

So, I will be here, as it is time for me to try and return to work, although on a very limited basis for August.  I will still be scarce as our days are determined by Teagan’s health and needs, which seem to change daily, or even hourly.  We hope the good days will last longer and the bad ones will taper off.  In the meantime, I will talk more about client work and catch up on some sessions.  Our personal life may just have to be the big white elephant around here for awhile.  I’m ok with that, if it means I get to be here more.  I hope you are too.

2010-08-14T23:20:10-05:00August 14th, 2010|My Family, Uncategorized|

picture this

TEAGAN UPDATE:  As of this morning, he is 100% better.  No signs of the tic and he’s back to his normal self.  I’m still in shock and feeling so thankful it was something so easy….because my heart aches knowing how bad it could have been.  Sometimes it is after the fact that it sinks in and your heart hurts, which is crazy, because we are thankful, but the fear of what could have been sinks in after the adrenaline is gone and that is where we are now.  Shocked, grateful for his angel Kelly who lives thousands of miles away, and just amazed at the fast turnaround with the right diet placed before him.  I will come back this week and talk some more about what we have learned and changed because I’ve gotten a ton of emails about it and it is easier to post here than to reply to each one coming from comments/email/facebook,etc.  And can I just say this again…..BLOGGING ROCKS!

Back to our previously scheduled blog post:

Alli brought Taryn & Lily to school one day last week.  When I told Taryn that Alli would be picking her up and taking her to school that day, she leaned in close, got very serious and said “…but will Lily be in the car?”  HA!  Yes!  To which she replied “ok good, then I’ll go”….but the waiting for them to get here part was pure and complete torture.  All 3 minutes of it.

While taking the above shots, my duder, being the comedian of the house, rounded the corner in the hallway and jumped out in front of me with his best signature silly face (mouth wide open, head titled to the side), full on jazz hands and yelled “Momma!!  PICTURE THIS!!!”  HA!  He cracks me up, little stinker.

2010-06-26T18:28:57-05:00June 26th, 2010|My Family|

TS3

Excited doesn’t even begin to describe the vibe in the air at our house tonight.  We’ve waited and waited and waited some more……and today was finally the big day.  Taryn has talked about it every.single.day for months and months.  Teagan’s first movie theater experience was a success!  We laughed, we cheered, we cried, Teagan danced.  Totally worth the wait.

2010-06-21T21:41:01-05:00June 21st, 2010|My Family|

the reasons

When asked what he wanted to do today to honor him on Father’s Day, he answered that he wanted to see the kids smile.  Not that he wanted a day to himself, or for me to take the kids off for the day, or to go do something specifically for him.   He knew the new carousel at the mall would do the trick to get the kids smiling, so off we went, knowing full well the mall is not his favorite place.  And smile they did, Taryn from ear to ear and we all got a good laugh at Teagan yelling “giddy up ELVIS”, the name of his horse.  He smiled right along with him and I loved every moment of watching them.  And throughout the day we laughed more as we talked about why the sky is blue, little boys who don’t yet understand the concept of the baby monitor and little girls who question gravity.  We danced and played and read and laughed and ate lasagna.  We changed diapers and fixed sippy cups and took kids to the potty and reminded Ty to do his chores.  We cleaned and cooked and snuggled.  And while we doted on Jase and appreciated him a little more than usual, he had no desire to take the day off, all he wanted to do was enjoy the 3 reasons he gets to celebrate today in the first place.  And I fell in love with him a little more for it.

He was a daddy long before he ever “had” to be.  He wanted Ty to have the love and foundation that he was blessed to grow up with.  And once he and I were committed, he gave that to Ty, without being asked, unconditionally, unselfishly and has loved him as his own.  To get to watch him be a daddy again and then again, to the younger years of life, has been filled with endearing moments and laughter.  He’s shed the idea of being the perfect father and it has blessed our children.  He shows them his strength, and his weakness, all with unconditional love, in a way that allows them to feel safe and confident in their own imperfections as well.  To grow up thinking your parents never did anything wrong or make mistakes or that there were never really hard times or challenges and hurts or failures or changes that were really, really hard, would be like living in a pretty bubble only to have it popped when you are grown and arrive in the real world.  It is a great balancing act to create a safe, loving, thriving environment for our kids while leading by example of how to handle all the hard, real, stuff that life throws at us.  He does it with patience, and love, and a whole lot of laughter.

2010-06-20T20:51:32-05:00June 20th, 2010|My Family|

flashback friday, what I didn’t know then

2 years ago….I didn’t know….

  • he’d be a huge fan of the karate chop.
  • he’d love to dance more than anyone I know.  especially at random, odd, moments that would make everyone laugh.  especially strangers.
  • he’d be capable of full, long conversations.
  • and when said conversations are constantly interrupted by a chatty older brother, he’d get frustrated and always say “Tyyyyyy, I not even talkin’ to you, I talkin’ to Maaaaama!”.
  • that he’d love ovals and octagons.
  • that it would take so long for he and taryn to find a happy place.
  • or that it would be that much sweeter when they finally did, because the road to a mutual love for one another was so curved.
  • he’d be able to hit a ball with a bat every.single.time you throw one at him.  without a tee and without teaching him.
  • and throw a football, 10 feet away, right to you, every time, with a spin.
  • that he’d do everything possible to hula hoop like his sister, but when he couldn’t figure out, he’d pick up the hula hoop and run around in the cutest big circle with the cutest big smile that I ever would see.
  • that the ultimate insult he’d ever use at the ripe old age of two would be calling someone a “stinky head”.
  • that my heart would melt daily when after naptime story, he’d roll over, say “I wonna nuggle”, grab my hand and lay his head on my chest.
  • that an automatic spiderman toothbrush could be the biggest, most thrilling, highlight of the entire day.
  • that blankie would be his best friend.  and he’d bring blankie to me throughout the day and say “here momma, you love blankie too…” bringing the stinky thing in close for a snuggle before running off declaring ownership with an “it mine!”
  • that he’d often declare, when strapped in to his carseat/stroller/shopping cart “HELP!  I stuck!!”.  and when we tell him he isn’t stuck, he’s intentionally strapped in, he’d declare us to be wrong, he “really is stuck”.
  • that swimming goggles would be a daily fashion statement.
  • that his constantly requested foods would be raspberries and “mac – e – cheese”.
  • that he’d always be first in line at the front door ready to wave goodbye.  especially when he isn’t actually the one going anywhere.

but what I really didn’t know, is how many times he’d make us smile and laugh.  he’s our chill little, happy, duder who has turned in to the family comedian.  that is no small feat in this house.  funny how I can’t remember what it was even like before he was here.  his presence and love is just that huge.

2010-06-18T22:13:43-05:00June 18th, 2010|Austin Photographer, My Family|

10

I’m not exactly sure where to start, it has been a crazy time for us.  This might be a little all over the place, but so am I right now so it fits, and its real and us.  I have to start somewhere, so here I go after one of the longest weekends ever….

1.  Let’s start with something, and someone, who makes me smile.  Every now and then I take a photo of one of my children that shows me who they are and I love it so much that I just want to hoard it and keep it all to myself.  I did that with this one for awhile.  She makes me smile so big.

2.  Yeah, back to that long weekend….Friday was the last day of school, Ty had a half day so that meant he and Taryn needed to be picked up at close to the same time.  That means I’m pretty much in car pool all.day.long.  Poor Teagan was pretty mad about being in the car all day.  We finally got home in time for naps with all 3 in tow.  About an hour into his nap Teagan had the mother of all asthma attacks.  I heard him cough once and I bolted across the house, I just knew.  I can normally see the signs that it is coming, I’ve learned his cues.  But he was asleep and away from me.  I ran to him so fast, I just knew, but by the time I got there he was flopping around on his bed like a fish out of water, wheezing, scared and closed up tight.  Thank God Ty was here with us, he grabbed the nebulizer, I grabbed his meds and we met in the middle.  My poor little man was trying so hard to breath and normally the arbuterol opens him right up, but it took a few minutes.  This was the worst one yet.  After 7 minutes or so he was still wheezing post treatment (but he could breath and was MUCH better), so I called our pedi and brought him in.  He was still wheezing when we arrived 20 minutes later but was thankfully on the tail end of a very bad attack.  To say that Jason and I are fed up with his treatment plan, or lack thereof, is an understatement.  There is no plan, there is no interest in figuring out his triggers from his doctor, they only seem to be willing to put a bandaid on it and give us more steriods.  Don’t get me started about how I’ve been begging for a pulminologist referral for a year.  And an allergist.  I finally got one for the allergist on Friday, but they still refuse to refer us to a pulminologist (our insurance requires written referrals).  We are fed up, we are going on our own as a self pay and we are finding a new pediatrician.  They have let us down in many ways, both with our children and with our health care (we all go to the same office) and it truly is time to move on.  If anyone knows of a great pediatrician in north austin that is good with asthma kids, please send them my way!

3.  Saturday I spent the better part of the day hovering over Teagan who still wasn’t doing very well and I ended up bringing him back in to see our pedi that morning.  There was some confusion over his asthma meds (caused by me but I was wasn’t happy with their answer.  We worked that out, got him a necessary refill and talked more about the long term 2x minimum daily use of the meds he’s on (I’m not thrilled with).  I also started clearing Teagan’s room of anything that could possibly be a trigger, we really need to make some changes in his room, we’ve started and will be making more in the coming weeks.  The upholstered chair is already sold and gone, the carpet is the next to go.  That afternoon, Jase took Taryn and Ty out to the natural caverns in Georgetown.  They had a blast!  I worried about Taryn in a dark cave but I was reassured she did just fine, even when they turned out all the lights in the cave.  She even let me know she didn’t have to hold her daddy’s hand in the dark.  Daddy swears otherwise….so, if you were standing next to a 6 ft tall bald guy who tried to hold your hand in a dark cave in Georgetown, he belongs to me 😉  The best part was that T came home so exasperated and just had to tell me all about it….the cave, the bats, the gem mining and the most very best and special thing at all, “mom you won’t even believe what they had there….a giiiiiift shop!”  Love her.

4.  Sunday was spent me running around like a crazy person getting ready for Ty’s birthday.  I had finished all the shopping for gifts but hadn’t done a single thing for his birthday party, that night.  Slacker (busy) mom!  So Teagan, Taryn and I did some party planning while Jase and Ty went off to the Star Wars Concert that was Ty’s birthday gift.  They had a total blast, it was apparently nerd heaven, but I have a feeling they fit right in based on the iphone pics that landed in my inbox about every 10 minutes 😉  When they got home, the house was decked out in Star Wars party stuff, we opened gifts, had cake and a little party.  Ty dubbed it the best birthday ever!  Photos forthcoming….someday.

5.  Monday was his actual birthday and we decided to go the cheap route and take the kids on the cap metro rail that opened a few months ago.  We thought they’d enjoy the train ride and then we could pick up dinner.  We underestimated the fact that Teagan would hate having to sit in a seat without a carseat or seatbelt.  He refused to sit still and basically threw a massive fit when we wouldn’t let him have free reign.  That was on the way into Austin.  We got off, had a slight layover, got back on, Teagan was exhausted by then and cuddled up on Jason’s lap but Taryn was totally delerious and giddy to the point of loud laughter and weirdness.  It was funny for the first 15 minutes.  At least it was to me.  Let’s just say that by the time we got back to the Leander station Ty was mumbling something about never having children and bolted out to the van before our butts barely left the seats.  We made it up to him with a brownie and ice cream though at dinner and he forgave us (them).

6. Speaking of brownies and ice cream, when we stopped in at Chili’s, we told them it was Ty’s birthday.  I knew Teagan would clap and sing along at the top of his lungs because we’d been practicing (and he did), but I suggested Jase warn Taryn about what was about to happen because she has a fear of the birthday song, especially when it is loud.  I was cracking up on the inside watching them from across the table as he whispered in her ear and her eyes immediately went to the closest escape route to hide under the table.

7.  My mom is a smart, smart lady.  She sent Taryn and Teagan little gifts in Ty’s birthday box and boy it’s a good thing she did because Teagan was none too pleased that he didn’t get to open Ty’s gifts.  It’s so hard to understand at his age….I’m a little worried that birthday season is coming up around here, we have one after another.  Maybe I should hit the dollar shore and get him a handfull of little things to help ease the birthday blues for little dude.

8.  Birthdays are a lot of work and man am I exhausted from our weekend of fun.  Totally worth it all to see Ty so happy.

9.  But there is no rest for the tired.  I have sessions every day this week except for this past Monday all the way until next Tuesday.  And Taryn starts T-ball this week.  And Dr. appointments and Ty needs to go to the dentist and get his physical for football and a much needed girls night out (girls do you still have your taste buds intact after that salsa last night?!  mine are gone, at least the top layer!)…and, and, and….

10.  Ah, I saved the best for last.  Lily’s birthday card she made for Ty….I think I need to frame it.  We all laughed and giggled and laughed some more when it landed on our doorstep.  Covered in marker and pretty pink hello kitty stamps on construction paper, the inside reads:

“Dear Ty, I like you because you are so nice.  I think you are very good.  I hope you get a bike for your birthday . . . . and a castle.  Love, Lily”

Awesome.  And me too Lil, me too!  And I hope he shares!!

2010-06-09T23:08:59-05:00June 9th, 2010|My Family|
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