BUT.

BUT.

I took this image on a recent photo shoot in Newport Beach. There is a tunnel with all of this great, inspiring graffiti and this one always stands out to me. Life is beautiful but I think this is missing something.

I see more. I feel like life is too much more to be simply classified as beautiful, like the fact that not everything is beautiful, and there is suffering. Like how lately my legs feel as heavy as bricks, like any step (literal or metaphorical) I take forward takes every ounce of effort, like I am moving through vaseline, like there is just too much to get done.

We have a lot going on in our home, an undiagnosed special needs child traversing through teenager-dom. It is not easy. Every day is a struggle for her, and thus, a struggle for us. For our typical children. Every day. I don’t talk about it very much here, it seems counter productive, like whining, and it certainly doesn’t change things. But that is our truth. We handle as best we can the meltdowns of an almost sixteen year old every day. The notion that most children leave home to make their own life somewhere around the age of eighteen is a painful, throbbing, cyst of a reminder every time I look at her. That clock is ticking. Eighteen is so very close. Yet, Mckenna won’t be able to leave. If she does, we will have to plan for it. Place her somewhere. That idea alone can paralyze my thoughts – I can hardly look at that or let that in, but it is getting easier for me. I can shine a penlight on it and gradually the penlight will become a spotlight and I will know what path to take. But, our choices are care for her at home or PLACE her somewhere else. She will NEVER be able to be responsible for herself. The responsibility of knowing we are her only care-givers FOR THE REST OF HER LIFE is incredibly sad and incredibly daunting. It’s not something you really think about when your two year old is diagnosed with something no one knows what to call. But there it is.

After posting about thinning the herd, I went directly to Facebook and culled more than half of the people I was connected to there. I didn’t have a big list like some of my friends. I think my number was just over 300, but still. I went to Twitter and did something similar. I went through my bookmarks and deleted any blog who made me feel not enough or irritable, instead of inspired or connected. Then I took about two weeks to collect my thoughts and see how it felt. A week in, I culled more people. This process was tricky because I didn’t want to hurt feelings, and dropping people on social media can and does hurt feelings. But at the same time I HAD to do it. I had to. I had to cut out some of the noise in my head. I can no longer give so much energy to it, when I have so many more real, in my face things to give my energy to. (See above.) Do I miss some of the people, of course I do. But I hope to be able to stay in touch in other ways, and I hope their hearts are soft when they think of me. However, if Facebook was the only means of keeping in touch, (which doesn’t take any real effort), than perhaps we don’t need to keep in touch. That’s all I’m saying. The process has freed me up.

(If you related to my thinning the herd post, you might also want to go read ‘How real do we want to be?‘ by Andrea Scher. This is a great blog entry and summarizes a lot of the same feelings that I had.) Hopefully I will make time to write more on this later. I want to.

Summer has ended and GONE BABY GONE are the lazy days of no routines and no obligations. School and people and carpool traffic and paperwork and rules and easily a thousand dollars out the door for four kids and all of the crap they need and blah blah blah blah blah. Not my favorite. We all go through this transition every year, and every year it is rough on me because I don’t like to accept the change. Making it more difficult this year is having four children in four different schools. Three of them start at the same time in the morning, and only one of them can walk. I can no longer get everyone ready and out the door on my own, so Jeff and I wake up together in the morning and share the responsibility. This is my silver lining. And now that we have gone through the process for a few days, I can see that this makes it easier than it has ever been. He has taken over Mckenna and breakfast, and this helps me focus so much more on what the other kids want and need. Healthy lunches, last minute signatures, personal styling, a quality connection to Mom before leaving for the day. By taking over Mckenna, Jeff has given me the gift of being able to be there for the other kids. Silver lining number two: the two of us attempt to wake up at least fifteen minutes before anyone else, to enjoy coffee and someone on the record player, and the drowsy silence of a new day together.

New, earlier school end times have cut a HUGE chunk out of my work time, and so I am getting used to that. I always work a lot in the Spring and Summer, then slow things down in the Fall while we get used to school again. I don’t like the hustle of clients getting last minute Christmas card photos anyway. But it’s another transition I must go through. Compared to the last few school years, I lost two hours a day to productive work time. I am now in the car from 1:30-3:30 picking up kids after school. (Once the kids are home I don’t work, at least at the computer.) Those two hours of empty no thinking driving time, dealing with cranky people who are often impatient and mean in the safety of their cars, makes me want to SCREAM. AT THEM. OVER AND OVER. I feel like I lose brain cells every day. Like big huge scoops of my brain are falling out my ears as I drive the same streets back and forth, back and forth. I am kind of sure that pretty soon I will be okay with our new schedule, but for now I just don’t want to do it.

I am positive I need to adjust my attitude and focus on my purpose, I just don’t always know how to do that. This is why I have a weekly therapy call. I have a feeling my therapist will take great pleasure in helping me figure it out this week. Thinking about it, I can’t decide if she is going to tell me to grow up and be an adult and take care of my responsibilities with a good attitude because it means I am not dead, or if she will say this is a hard transition and you need to give yourself time to recuperate from Summer. Or both? This is why I talk to her once a week. She always gets me back on track. Especially during twisty times like this.

What I do know: Mckenna is alive and we are alive and for that I am grateful. If we were dead and gone we would no longer have the chance to feel the joy or the suffering in life. I don’t want to be walking dead, shuffling through my days, avoiding the pain and thus, the joy and everything in between. I want to take it all in, accept it, and be glad to have it because I am here.

I really want to be here as long as I can.

Life is beautiful but life is also full of suffering. And we are damn lucky to get both. And that is all I wanted to write underneath this graffiti in Newport Beach.

Tara

 

 

 

 

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102 Comments

  1. I deleted lots of people on Facebook and I know that has upset some people but it was dragging me down.We just need to stay true to ourselves and do what is right for ourselves and our families. So glad you have found a silver lining to your busy schedule. I make the lunches the night before to ease the craziness as I have a daughter with ASD and mornings can be a delight/disaster depending on the anxiety levels surrounding the day. Thanks for sharing

  2. Thankyou Tara for sharing REAL LIFE on your blog. For baring your soul and for making other people THINK…I am so tired of only reading about the sunshiney side of life on blogs, some of which I have now decided to abandon. I will continue to follow your journey with interest.

  3. Tara, unless people have a family member who has special caring needs then it is not for others to begin to know what life is like for them and everyone in their family caring for them.
    “Those who mind don’t matter and those who matter don’t mind.”
    That helps me get through a whole lot of situations on a whole lot of days.
    “Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.
    –Christopher Robin to Pooh”
    :) See ya.

  4. And sometimes life sucks. My husband lost his job a week before I was diagnosed with cancer, right at the beginning of summer. I have been living in a state of fear, worry and depression ever since. AND YET, over the last few months, I have felt so close to my husband- those wedding vowels keep resounding in my ears, I’ve watched my children grow, become so responsible, to understand that even though our lives are so up in the air, we have so many blessings, and we have each other. And some how, day by day, we put one foot in front of the other and keep our lives going (with minimal breakdowns from me). So maybe it should be “life is a blessing”… The one thing I try and remind them, and myself, is to see the beauty around us, to focus on the good things that happen every day, no matter how small. I hope that you can find your rhythm, try your favourite music in the car, or audio books you can listen to with the kids…. There’s nothing like negotiating selfish drivers to put a dampen on your day!

  5. I stumbled on your blog a few years back and have kept coming back because I love your photos. You have an amazing style. What has been such a pleasant surprise is your honesty….your “realness”. Life isn’t sunshine and roses…it’s hard. We all walk a hard road but no one ever wants to talk about it. Thanks for keeping it real!

  6. I think about this a lot, how life is a great thing, but about how the more people you know, the more suffering you endure. And how I have no idea what some people are walking around living with. Life is hard, and busy, and happy, and sad, thankfully I cling to a God who I believe knows all about it. Not sure how I’d get through a day otherwise. Thank you for your thoughtful post, as always, Tara. xo

  7. hellooooooooooooooooo are you out there…I want to respond but I understand with as many followers that you have, you might note ever read my comment but its just something i need to get off my chest…

    its incredibly hard. so incredibly hard. you muddle through and worry and pray every second of every day that you’ve made the right choices. some are…some arent and you beat yourself up when they arent but

    there’s soooooooo much love so much in the gift that is giving that I pray for our comfort….I pray for our strength…and I pray for their grace…

  8. I like your addendum…about suffering. You should fix that graffitti.

    I can’t say what I want to say very well, so I just want you to know that I think maybe I’m along the same path as you a little bit. Life is hard. But I’m alive.

  9. I love your work and your words. But, perhaps there is beauty in the suffering. This is coming from one who suffers and has suffered immensely. It is in experiencing the suffering that we have the capacity to experience equal joy. Suffering brings us closer to our loved ones and to our Maker if we let go of our limits and experience the true capacity of our human souls.

  10. I work as a counselor in a group home for young adults like McKenna. I love my job and love “my guys” very much. I’m not trying to paralyze your thoughts, but I did want you to know that there are people who work with kids/adults like McKenna and love every minute of it, including the meltdowns. Stay positive.
    -lizz

  11. I hate that I feel pushy when I feel like sharing a scripture with someone. But I do. But I’m going to anyway. This one REALLY helped me out last week. I don’t even remember where to find it – “I have chosen thee out of the furnace of thy afflictions.”

    You’re right. There is a lot of pain and suffering and life can be really daunting. I believe that these trials make us into the awesome that we are supposed to become. All of us already think so highly of you, Tara. And your Awesome is going to completely skyrocket as you traverse this new trial.

    You are going to rock this. You have what you need. We are all rooting for you!

  12. You’ve got a good heart Tara and you will figure it out, your kiddos are so lucky to have you…and can I just say YAY for Jeff for helping out in the mornings. Tell him some stranger on the internets said yay for him! I love it when dads step up.

  13. I just wanted to tell you to hang in there Tara. Im a new photography blogger and do NOT want to get sucked in at the expense of my family and I dont normally make any comments on blogs. But I do see that you are a writer and I believe thats going to see you through in a way. Tears unexpectately sprang to my eyes when I read your post. It all really hit home, having 4 kids myself. Our oldest having an extremely difficult time in the teen years and another having going through 3 years of cancer treatment treatment while our twins were newborns (everyone healthy now).

    Life is HARD. You feel how you feel! your’re not a whiner. Reach out. I wish I had. People always thought I handled it all so well. I was just dying inside and utterly exhausted. Beyond exhausted! I could type forever on this but I’m a writer and I’m on my droid and the keyboard is acting up and my settings are

  14. Hugs Tara. I hate transitioning out of summer too. The schedules, the afterschool activities and the mad dash to get there on time, snack-packing, etc etc etc. And I only have two. So big big hugs my dear. I love that quote – life’s not about avoiding the storm. it’s about learning to dance in the rain. kinda my mantra :)

  15. my NAme is Lori And I came upon your blog through my sister on law who also reads your blog… I just wanted to say how inspiring I find your blog, as a mom of a special needs child (my daughter has CP and Autism) it’s nice to read and hear about other moms going through the sane kinds of things that I go through on a daily basis! Thankyou for your honesty and posting!
    Lori Bruce

  16. Hi Tara, I don’t know you, though of course I feel like I do because I’ve followed your blog for a long time now. I wanted to tell you a few posts ago that I hope you don’t stop sharing about your life here with us. I know it takes courage to put it out there, but i really appreciate that you aren’t full of shit. It’s a rare read, your blog, and one of the only ones i take time for. I have four kids too, all a bit younger than yours, but you certainly put into words what I’ve been feeling about school. It’s interesting how the topography of our life as “stay at home” mamas changes every September. It’s never the same from year to year. And it seems like we don’t get to stay home much, really.Anyway, hope it’s a valuable one for each of you.

  17. Again, your writing touches me in a way.. I have my 16 year old who is newly on a meds
    and to this day not diagnosed with anything other than being “learning disabled”. With my three other children I often worry about the future. Sometimes it paralyzes me.

    I guess it’s all about staying strong. I am recently recovering from cancer. I am 39. My youngest is 3 and my oldest is 17.

    We must stay strong because life is so short. Why be unhappy during it? We must smile and laugh each day. We were given a special challenge is all.

    ;) I know I am just a stranger and I too follow only a few people..it’s all I can handle with my personal time.

    I cherish those few people!!! :)

  18. To echo others, thanks for sharing your life and your photos.

    As a physical therapist who has worked with special needs kids for 25 years, I have learned a lot of things from parents. One of the wisest things I think I ever learned was the idea that if you have a child/young adult that will need care for the rest of her life, perhaps it is better to start the process of looking for a “place” sooner rather than later. That way you can closely monitor how it is going, can pull them out if need be while you are still physically capable of caring for them. You can support them throughout the transition. Rather than the tragedy of caring for them your whole life, and then suddenly you are gone, or ill, and can no longer care for them. Then they are without you AND they are thrown into a whole new living situation. Obviously you are not anywhere near this point, but it helped me understand why a family I knew put their son into a residential placement while they were still in their physical prime. They did have to change placements several times to find the best fit for him, and it was not a hardship for them. He still spends weekends, holidays etc with them, but he also has his own life, separate from them, so that all does not end when they are gone.

    Anyway, just thought I’d tell you that , for what it is worth. Love your blog!!

  19. Hang in there, girl! I too, have 4 kids at 4 different schools. Carpools help but there is still an awful lot of time in the car…it sucks but that’s just part of my life. I try to turn off the radio completely (when I’m by myself) or listen to something calming while I drive. The kids call it yoga music. :) I guess it is yoga music in some ways but there is something about the repetition of the chanting that is so calming. It makes me not hate other drivers so much…most days. My favorite artist is Mirabai Ceiba. You should check them out. It’s not for everyone but it really does help.

    I totally get the FB/Twitter clean up. In fact, I’m getting to the point now where I’m considering deleting family members and close friends because those are the people who should just pick up the phone and call me. It seems like we as a society are getting away from having meaningful and intimate relationships with our texting and our social media outlets. Anyway, pardon my rant. :) It helps me to know that there are like minded people out there. I hope it gives you a sense of calm and support too. :)

    xoxo

  20. Tara, don’t let the weevils get you down! You are on the right track – simplify and enjoy the small moments. I’m sending you mental warm and gentle fuzzies to help you get though your blue period. Love that you are stealing moments in the morning to hang with your husband and spin some vinyl. Stay strong mama!

  21. please keep these types of posts coming. they are raw, and real and what keep me grounded and realize, i’m not alone in my day to day battles of motherhood. so for what it’s worth, a humbled and heartfelt thank you. you’re amazing in my eyes, tara. i don’t know how you do it. peace.

  22. Life has gotten in the way and I haven’t had my dose of Tara-ism for some weeks and was bought back to some form of reality when I read your blog.
    One breath at a time and a moment at a time and soon the sun will shine.
    Lydia, your words are beautiful.
    And Tara, you are enough (hugs)

  23. (((HUGS))) What you wrote about McKenna my parents could have wrote 45 years ago. I have a special needs brother who is still living with my mom and I know she had the exact same thoughts running through her head that many years ago. The difference from then to now is that the doctors kept telling my parents that my brother would not live past his 30th birthday. He will be turning 60 next week. Now that my dad is gone and my mom is up in years, she needs to really think about placing him in a home. Even though the road had been a difficult one, I do not think that my parents would have changed a thing in the choices they made. And with living with a special needs brother, I believe it has given me more patience, tolerance and acceptance than if I did not. So you are absolutely spot on when you say, “Life is beautiful. Life is suffering. We are damn lucky to get both.” Love it!

  24. Thank you so much….for reminding me NOT to visit a certain blog….which always makes me feel like shit, in so many ways. I visited your blog on the right day. Many thanks.

  25. My husband calls me “the and girl”. Sometimes, it is because I don’t want to make choices. I want this AND that. I don’t want life to be OR. Mostly, it is because I see both sides of things. I see many aspects. Yes, indeed. There is beauty AND suffering. We do not need to have one to appreciate the other. When we have both, though, it is good to be able to see both, to appreciate both, to accept their place in life. Thank you for sharing a beautiful post, for opening your heart, for sharing your vulnerable places and your doubts and your certainties. Hugs to you.

  26. At times, when I feel as though I can’t deal with what is thrown at me, I repeat this phrase over and over…. “God brought all people, situations, and opportunities to me… To help me grow, and learn what is good for me, as a learning experience.” It says a few things… People, situations, and opportunities are brought forth to teach me… Whether it be an obvious great feeling, or a bad feeling that I have to learn to let go of to make myself a better person.. Sometimes I feel God has a sense of humor, and throws something bad at you when things are going good… Its only a test to see how strong you are…

  27. this post is exactly what i love about reading your blog…
    you were one the first blogs i read regularly
    & though i get behind sometimes i always love catching up on your beautiful, difficult, lovely, real life…
    you always make me feel inspired & connected,
    thanks for always sharing with honesty…

    ps you’ll always be in my herd,
    no matter how many times i thin it :)

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