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.