personal project \\ six people twelve times \\ 07.10

July is going to be pretty hard to talk about, seeing as how I can hardly remember what happened now. What day is it again?

It was the coldest July we have had in southern California in 100 years. I am not complaining.

We took a vacation, but we didn’t go very far. (This photo was taken on the ground of the Orange County fair, after all of us took a turn in a photo booth.) I remember reading in a magazine years ago, about a great way to save money while going on vacation. The people in the article – they called it a “Staycation” and spent time at home and in their city acting like tourists. It was the perfect fit for us homebodies who live in an area full of things to do. We thought it would be perfect for Mckenna, who doesn’t like flying or traveling. And it forced us to get out and do the things we have always said we would do. Like rent a boat, see a play in Balboa Park, go to the local water park, spend a day in Mission Beach, take the kids to a concert, do a food crawl at the OC Fair…

All in all the week we spent together was full of good memories, but it really brought to the forefront something else that is hard to talk about. Mckenna. I don’t often talk about how hard it is to parent a child like her. I choose to focus on the good things, and each good thing is such a celebration that it is easy not to tell the whole truth about our life with her.

But…

Mckenna doesn’t like doing things. Mckenna doesn’t like to be in, what are to her, stressful out of the norm situations. Like vacations. Mckenna would be happiest alone in our house, with no noise except for the noise she creates. With full control of what she wants to eat and when, what she wants to do and when, and the remote control. Her natural tendencies lean toward an isolated hermit in the middle of nowhere. With a Target for dollar stop shopping. That is always empty, except for one cashier and her. Because of this, Mckenna tends to impede on the sense of ease and fun during a vacation, and what really became clear to me on this one is that we need help. What really became clear to me on this one is that my burning desire to have my family unit always together, may be actually tearing us apart.

Now that the younger three have surpassed her emotionally, we are in this impossible place. Parents to a child like Mckenna, but also parents to three typical children like Drew, Nathan, and Anna. They both need us equally as desperately. And as I stare, slightly stubbornly, down the barrel of parenting an adult with special needs, and the rest of my life, I start panicking. I don’t know what this is supposed to look like. I don’t know if I can do this. I certainly know I don’t want to be doing it alone anymore. It isn’t fair to the rest of them. I focus so much of my mothering time and energy on Mckenna, and the rest of them are so easy in comparison, that they get the last bits of me. The tired worn down please just make this easy for me bits of me. I don’t want that for them. Yet, I don’t know how to make a safe place for all of them, while giving each of them what they need. I have thought for so long that I can handle this. That I can be this mother to all of them. That I can make Mckenna happy or healed all while giving the others everything they need. And I can’t. I am feeling my limits crash into me all the while fighting them.

The confusing thing with Mckenna is that there are moments of astonishing peace and joy for her, like when she sat at the front of the boat like a mermaid statue and smiled for an hour as the ocean splashed her face and the boat bobbed in the water, or when we walked out of the Train concert and she said she loved concerts and the next one she wanted to go to was Alicia Keys. Those are the moments that hold me over through the bad ones and make me sane, but they also tease me into believing that she can have MORE moments like that, if only I try harder. If only I give more. If only I fix her.

And I can’t. She is not “fix-able”. Whatever good moments she has, are most likely nothing to do with me. Just like whatever bad moments she has, are most likely nothing to do with me. They just are. They just exist for whatever reason the synapses in her brain allow them to exist in that moment. She is unexplainable and impossible to solve. Mckenna is not free. She is locked up and hidden from me most of her days and most of her life. Those moments that I cling to are few and far between, and yet I kill myself everyday to try and get more of them.

What I saw on our staycation broke my heart. I saw the five us of, wanting desperately to have the kind of time “normal” families can have, time to be free, and failing. And in that failing, feeling completely broken down in moments when she was broken down. And guilty for feeling that way. The flow of the vacation stops and everyone has to stop being who they are, to fit into the box Mckenna needs in order to function and feel less stressed. We are good at it. They are better – they have been doing it all of their lives. I saw my other three children sick to death of people staring at us, the curious public the unintended paparazzi of our outings. Usually our outings are broken up – we spend a lot of time at home in between recuperating. But with several days outside linked together, the staring and the issues involved became overwhelming. Everyone stares. Not just children. Adults, groups of people, will whisper and point and think I don’t notice. I just want to be invisible. For me, getting stared at is especially hard. I think Anna hates it almost as much as me. Mckenna is the only one who doesn’t notice. She thankfully doesn’t have to feel that pain, but the rest of us do.

One of the reasons I fight my limits is because unless we are all together, I feel like we are not experiencing things to the fullest. If Mckenna stays home, I feel weird, off kilter, and guilty. I know that even if there are three hours of hell, she may have one second of bliss in whatever we are doing, and how can I deny her that? This is how we have ALWAYS operated. “Ohana means family – nobody gets left behind!” It is an idea Jeff and I have always had – and our family has flourished in it a lot of the time. But things are changing. Like I said – the other three have surpassed her emotionally. A lot of families have that, with older children and maybe a surprise younger sibling. But it isn’t like having a younger sibling who is a toddler. Because Kenna will never grow out of this. I don’t want them to grow up resenting us, or her, for what we did when we thought it was what needed to be done.

And so I am here, trying to figure out the best way possible to go forward for our family. Thinking of Mckenna. Of Drew, Nate, and Anna. Thinking of Jeff and I. How can we make this new time in our lives work in the way it has worked in the past? Maybe that means getting daily in home help. Maybe that means bringing an aide along with us to care for Mckenna so that we can focus more on the other three. Maybe that means leaving her at home while we do the things “normal” families get to do, with no one staring at us, and not having to mold into her¬† box, just getting to be free of the locked up parts of her brain for awhile. I know for certain, it means dropping a lot of the preconceived notions I have had for her life and ours.

I am scared. I am uncertain. I am tired. I have cried a lot this month. I wish more than anything for my family to be able to be together, all the time. But what I want even more is for each of them to get exactly what they need from me.

And yet, there are so many reasons for us to be at ease, and happy, and there is a sweet escape in that. We are in love, so in love. We have this great big family. They mean everything to us. We like who they are. It is summertime, and we have no major responsibilities. We get to take them to basketball camp and surf camp and horse camp. We get to watch them explore the ocean in a boat, their chins hardly poking out above life jackets. We get moments of extreme lucidity from Mckenna, where she asks us how to smile. We get to hold hands and scream out songs we sing together in our car, outside at a live concert with twinkling lights and cell phones held up in the sky. We get to nudge to the front of the crowd to show Anna the newborn piglets and listen to her squeal just like them. We get to stay up late in our hotel room, and have a midnight dinner at Denny’s. We get to enjoy possibly one of the last summer’s that Drew will really want to spend time with us instead of his friends. We get to watch him spread his wings. We get to float on our backs in the pool, while holding hands with Nathan, staring up at the clouds. We get to cuddle him at night, because he asks every single night for one of us to cuddle him. We get to plant strawberry plants together in wooden containers in the backyard.

We get to simmer in the life we have made for ourselves, with all the good and bad.

We are the only ones who fully understand what it is like to live with Mckenna. We have each other to lean on. And most of the time, that is enough.

xo

Tara

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247 Comments

  1. I have nothing to add to the already beautiful and encouraging comments, but I just wanted to send some (cyber) hugs, and tell you that my first reaction to your post was how lucky your kids are to have a mom who so obviously has their concerns and feelings at the forefront of who she is.

  2. I have no answers, I have not commented here before, but this post has me in tears, and I want you to know I send you peaceful good wishes. Parenting and those decisions we make…if only there was a sign that said this way will result in the least amount of required future therapy …:) we can only do the best we can with the moment we have. Your honesty touched me deeply, and I will continue to hold you and your family in my thoughts for a long time to come. You are wiser than you may sometimes feel.

  3. As a Mom, in a newly blended family of 6, the youngest of whom is special needs… I bawled through this whole entry. We are still figuring it out too, and it is HARD.

    Thank you for writing this. I am struggling with needing help as well… Thank you, Tara.

  4. This is such a touching post tara. I am overwhelmed with emotion for you and your family. I am praying that you find the answers you are searching for for everyone in your family. I hope that soon everyone will be as complete and happy as they can be. Know that I will be thinking of you and your family and wishing for the best for each of you.

  5. I’m not a mum and don’t have any idea what its like raising a special needs child…but I think there’s a beauty in embracing the uncertainty and messiness of the moment. Sure you dont know what the hell to do right now, but its ok…sending the prayers out to the universe like you’ve done does this amazing thing of bringing the universe to you. You’ve allowed yourself vulnerability and touched a lot of people by your words here…to me that’s pretty damn beautiful.

    You’ll get through this. Lots of Love to you. :)

  6. I opened this post and was like: No way, those are the CUTEST and most clever photo strips I’ve ever seen! And then I read your words posted below and my heart overflowed with love and compassion for you and your beautiful family. I can’t fathom what your daily lives and routine are like, but I know that you love each other to the very core of yourselves and that that will never change. I’m sad that you get stared at in public by ignorant passers by. I’m sad that you only get tiny moments with McKenna, but happy that you do get some. Try not to beat yourself up and feel guilty when/if she doesn’t come along with you on some of your family outings. You’ll always have her right there with you in all of your hearts. Blessings to each and every one of you. Thank you for sharing so much of yourself. You are a beautiful example. XO

  7. Oh Tara! I wish I could send a hug over the internet. What a touching post, thank you so much for sharing. Even though I just recently met you at my session, I know that you are a wonderful person and mother. Your children are so loved, you can see it in their eyes in every pic you post. Be strong and follow your heart. As your children grow and change I’m sure your approach will have to change as well but I am sure it will always be in the same loving atmosphere you have created, just in different ways.

  8. Hey Tara, words feel so inadequate after such a heartfelt post, so I’m just popping in to send you big hugs and to echo what everyone else here says: you are great parents to a wonderful bunch of kids, and every day you do your best by them. I’m glad Katie (I think?!) posted about what it’s like to be a sibling of a SN child – it gives you food for thought. And I don’t think you should feel guilty for sometimes leaving McKenna at home with someone you/she love and trust so that she can have quiet time and your other 3 can have trips that she doesn’t feel comfortable on. I certainly would never even think of judging you, m’kay? Take care x

  9. I’ve not commented here before, and just recently came upon this blog. I taught children with special needs for eleven years before succumbing to burnout, unfortunately. But, I can certainly say that you are one of the best supportive, nurturing mothers of a child with special needs that I’ve come across! Let me assure you that it is “okay” to have your family time without the presence of Mckenna. I know it must pull at heartstrings, but you are wise in realizing the needs of your entire family as your children mature. Mckenna will always be special and she will always feel your love. Be gentle with yourself. Blessings to your family.

  10. You are such an intentional parent. A caring, thoughtful, this-is-my-purpose-so-I’d-better-get-it-right parent. You see there needs to be a change, a rebalancing, and you act. Even if it’s hard. It’s the kind of parent I’m trying to be. Posts like this go on my mental parenting bulletin board. You have created such a beautiful web of support within your children for them to rely on. You have each other to lean on, they have each other. Sending good thoughts out there for you.

  11. beautifully and bravely stated. i’ve been reflecting a bit on this subject lately as well…as our 9 yo (ASD) gets older, it is becoming more apparent that we can’t move along as if nothing is special and out of the ordinary about our famly outings anymore. ;)

  12. Tara – what can I say that hasn’t been said? So raw, so beautiful, so honest. I don’t know you, but read your blog faithfully and have been along on the journey. I offer you my thoughts, hugs and best wishes, woefully inadequate, but nevertheless heartfelt. Hang in there – you’ve got a fabulous family!

  13. hey tara. wishing with all my heart that you receive the help that you need as a mother. i know we all are different, but when i can’t seem to find the answers on my own…the best place to find them is on my knees. love you.

  14. Tara-
    I cried and cried reading this. I forced our family helper and my husband read this post. It deeply touched all of us. Last year we adopted my nephew who has severe emotional, behavioiral and mental issues. It has been a constant struggle to help him and continue to raise our other three healthy children. We are currently driving home from the crappiest vacation ever. It’s like our son is allergic to happiness. His fits and tantrums occur any time one of the other 6 of us are happy. It becomes all about how he isn’t happy. He is eleven and by no means a hopeless lost cause as many have told us. But he has for ever changed what our family looks like, what a vacation can be, what we get to do. I cringe at the thought of leaving him behind. But every fun thing we do is ruined the fact that it doesn’t work for him. I love him. I love each of my children. It breaks my heart to have my family opened up to others’s inspection of what they think we do wrong for or with him. Reading your post brought tears of joy and sadness for me and for our families. Thank you for sharing the real picture of your family. It shines a ray of hope and understanding on the real picture of my family. It heals me to know that I am not alone in my joys and burdens of loving and caring for all my children.

  15. Tara, I hope you will make it to the end of all your comments to read this one. Thank you for your honesty, and opening your heart to all of us. I have a couple sibling one older & one younger that are mildly retarded. Both are high functioning but still there are many challenges we’ve gone thru together. Your children will be blessed because of the love you and your husband have for your family.. and will be incredible people because of the special relationship they will have with their sister.
    You do need help. You need the support of great people in similar situations to help you figure out what you can do for your family. There are also great services to help your daughter excel to her fullest… whatever that may be. We have been working closely with the Harbor Regional Center with my brother & sister. My nephew, who is autistic also has benefitted from working with them.
    Please check out my friend’s blog. She, like you, is incredible! Her son has a rare disease that affects him daily.

    presleyfam.blogspot.com

    More than anything, you’ve gotta know you aren’t alone! I love your blog because I love your work. I love the way you love your family & i feel the same commitment and passion about my own. I wanted to comment because I feel your pain. I hope this help.

  16. I’ve been following you since before Anna was born, first on two peas, now here. And fortunate enough to meet you when you took beautiful photos of Tess when she was a baby. I have no advice, just good thoughts and prayers and admiration for the love that is so clearly in your family, and all the effort you put into it. There are no easy decisions.

  17. you are fantastic parents. it’s okay to have help, so the whole family can spread their wings. nate, drew and anna will grow up with a deepened sense of compassion and understanding for others in this world.

  18. My oldest of three has autism. He is younger than M, only 4, but he has some of the same issues. (I don’t like that phrase, but you know what I mean.) He receives in-home behavioral therapy called ABA five days, 20 hours a week. It is teaching him how to live in our world while recognizing his exceptions and his gifts. It helps him, his siblings, our entire family. Insurance covers it. Something to consider.

  19. Tara, you have moved me beyond words. And if you knew me, you would realize what a tremendous feat that is. ;0) There is little I can offer that has not already been eloquently said here. Yet, I still felt compelled to reinforce two key points. 1) “Fair does not mean ‘everyone gets the same treatment’; what it really means is ‘everyone gets what he or she needs’.” — Richard Lavoie and 2) As a mother of three, and a 12 year teacher of children who have special needs I know nothing if not this — when I make decisions with my heart, they are usually the right ones. I’m sure you are no different. Dear girl, you have given every reader a special gift by posting with such honesty and courage. Thank you for being you. Sending you warm fuzzy hugs of support from Canada. xo

  20. Oh Tara, my heart goes out to you in this time of need. You are human to feel all those feelings. You will figure all this out and follow your heart. Sending prayers to you and your family!

  21. Tara I’m so glad you turned the key and opened this locked door in your heart. By doing so I hope it has helped free some fears and doubts you’ve been feeling and hiding so well….what an emotion you stirred along with a wealth of knowledge and support to get the help you’ve needed for so long.I hope all these kind and loving thoughts your way help you gain strength to move forward to do what is best for you and your family.I am so proud of you.

  22. trust yourself…trust your instincts…know that you are doing the best you can which, at the end of the day, is all any of us can do…try to let go of the guilt a little bit every day…

  23. I hope as I write this, my thoughts get conveyed the way I mean it. I couldn’t help but think as I read your post and the comments sometimes our solutions present themselves when we do the scary things, take the risks and make decisions. Do something, choose something, like daytime help, and then see what happens. If it doesn’t work, try bringing an aide with you. If that doesn’t fit with your family, move on to the next trial. Nothing you choose will be permenant, and you may try lots things that absolutely won’t work. But eventually you will navigate this adventure, and discover what meets the needs of your family the very best. Trust yourself. You’re in tune, and you are involved. You will know when you have found the right thing.

  24. I don’t know what to say. But I will say thank you for sharing your heart. Guilt is a nasty thing, you know you are doing the best you can, try and find peace and rest in that and let that nasty ol’ guilt slip away a little each day. xo

  25. Tara, thank you for always being honest and sharing your heart with us, even about the things that aren’t easy or pretty. As a mom of a special needs child a lot of what you said resonated with me. One of my twins has Down syndrome and severe communication delays. I have the same worries that one child feels neglected and resentful. I have the same worries that if we all just try harder one child will “come around” to moving and being in the world in a way that is closer to everyone else. What I do know for sure is that one child is more empathetic, sympathetic and helpful than some kids his age and he loves his brother for who he is 100%. What I do know for sure is that one child is filled with joy at all the little things in life and he makes all of us remember to celebrate those things too. So we sing in the grocery store and run in the rain and wear a silly hat and who cares if people stare (ok, Mommy is still working on that one). I think especially because they are twins we have always operated that we do everything together, but this summer we had little forays into doing things separately and everyone seemed ok with that and happier when we did come back together again. We’re looking into respite weekends and special needs summer camp and special olympics and acting classes and karate and art and gearing ourselves up to doing different things with different kids and letting go just a little bit at a time. We’ll take it one day at a time and breathe and keep on loving them through whatever comes next. You are a wonderful mom Tara precisely because you care and think about all these things and want to do what is best for each one of your kids. They knew what they were doing when they picked you and Jeff as parents.

  26. Hi Tara, thanks for sharing. I’m so sorry this has been a rough summer but it sounds like change is in the air and that is good. You are an extraordinary Mom and so courageous to recognize your limits. I know you and your family will find your way through this. Thinking of you :)

  27. – I hear ya! My daughter, who is 10, is like a little Mother to her brother, who is 5 and has some issues of his own. I feel bad for her because she will never have that normal brother/sister relationship, but now a days – what is normal? I hear the song “Day by day” a lot in my head (my daughter is a theatre girl). When I think about whether or not he’ll have friends or ever move out of the house or get a job or get married and have kids of his own I lose myself – I have to keep thinking day by day. He’s a happy kid and right now that is enough – right now I think having a preteen girl in my house may be a bigger issue – LOL! (p.s. you’re a lucky girl – don’t forget that)…

  28. Tara-YOU are amazing. I don’t know how you do it, but you do, every day. The following poem is one of my favorites.

    A Prayer

    Refuse to fall down.
    If you cannot refuse to fall down,
    refuse to stay down.
    If you cannot refuse to stay down,
    lift your heart toward heaven,
    and like a hungry beggar,
    ask that it be filled,
    and it will be filled.
    You may be pushed down.
    You may be kept from rising.
    But no one can keep you
    from lifting your heart
    toward heaven—
    only you.
    It is in the middle of misery
    that so much becomes clear.
    The one who says nothing good
    came of this,
    is not yet listening.

    ©Copyright 1980, 2007, Dr. C.P. Estes

  29. Oh Tara, I work in special education in Australia and how I long for parents like you for our kids. You have such a wonderful love for your children, you clearly long to see each of them reach their potential but fear your ability to help them because (surprisingly) you can’t do everything. You are right that it will always be a balancing act, but from reading your blog it seems as though you are doing a fantastic job! You have persisted taking your whole family out as a group and though it’s hard you can see the little gems that occasionally come to warm your heart.

    I want to encourage you to continue to fight for unity in your family and to also fight for McKenna to be free to stay home and happy whilst the rest of you go on certain activities. Know that as the parents of your children you are able to make these decisions without feeling any judgment.

    I love reading your blog (and seeing your amazing photos) and I look forward to more posts about how you continue to walk the tightrope of parenting 4 unique but great children!

  30. Tara,
    You know what the good news is? …we don’t have to be perfect! Thank God we do not have to be perfect! We just have to love them and use wisdom in raising them. If I can be totally honest from reading this it sounds like you have your thoughts in place…or moving into place. My husband is a psycho-therapist and he was born with really bad club feet. Which meant an entire childhood of 15 surgeries and so much time spent in recovery with braces and casts (and getting what goes along with braces and casts…the looks, stares and all of that) It meant many hours not being able to play like the “normal” kids. It meant “special” classes because he couldn’t play with the other boys. But…what it really meant was a boy who would grow into an incredible man that loves people that are hurting. I tell you this because you don’t know what amazing things the future will hold for you and the kids. You will not see the outcome of what caring people your kids will become because of life right now.

    Cherie

  31. gosh, you have a way with words… & even though i can’t relate to your situation completely, i feel your mom’s heart & i appreciate how real you are…& this: ‘it means dropping a lot of the preconceived notions I have had for her life and ours’….i can relate to that for sure…we all just want so much for them…& most of the time we don’t know how to give it to them until we ask for help (either just from friends through good talks, or the kind of in home help you’re talking about)…anyway, i just love reading your words so so much & i know you are helping so many people with them…

    ps i am totally stealing that photobooth idea…totally! (giving full tara credit, of course :) & i’m a little bit annoyed that i didn’t think of it myself…. :)

  32. Tara, I know EXACTLY what you are going through. Last September (after nine months of agonizing exploration and struggle) we moved Nathaniel into a group home nearby. I thought I was going to die. But I had reached a place where I could no longer keep everyone safe, and I wasn’t even touching trying to do my best by my other three children. Our entire lives wrapped around Nathaniel – as it should be – but the cost was becoming too high. And, I could glimpse around the corner the situation that would be too much – that would alienate us forever or put some other agency in our lives without our control.

    I don’t know what is right for your family. But the group home we found is wonderful – there focus is on giving Nathaniel power. Every hour of every day there are fresh, energy filled young people who are there for him. He gets to choose many more things than he could with us and he has much more structure. We get him for some time four days a week, but we can make choices too – like sending Jack and Alice to spend a week with their grandmother, or taking a weekend trip, or just going to Borders and having a cup of coffee.

    We just returned from a week trip to Disneyland that the group home arranged – it was a vacation with family, but there was also staff and a room for down time and choices for both Nathaniel and for us. It was amazing.

    I sat in the bus on the way home and realized that a year ago we were isolated and now Nathaniel has all these people – and he needs lots of people. I watched one staff member get in a bus drivers face because he wouldn’t let Nathaniel on a bus first – I would never have been able to do that, would have pushed Nathaniel to wait. But she was filled with clarity and passion and not at all self conscious or troubled by the pounds of emotion that fill these moments for me.

    You hit it on the head when you talked about not being able to fix McKenna – the gift these staff people give me is that they don’t want to fix Nathaniel, they want to fix the whole world so that it is ok for Nathaniel to be Nathaniel.

    Anyway, I wanted to share our experience. I know that I cannot provide everything Nathaniel needs, what I didn’t know a year ago is that there was a solution (for now) that would benefit all of us. Nathaniel has thrived in this situation – he talks more and is more calm. And, we have fallen apart and come back together as a family – we couldn’t fall apart before because we had to keep it together for Nathaniel. And, we sleep.

    Peace to you and all of your family. I’ll be sending you all my best thoughts and prayers, Susan

  33. Hi Tara…
    I felt compelled to write you a note.

    Years ago, I took a summer job. I really didn’t want to work there, but it was a job placement program through the state, so you got what you got. It was at a care facility. A care facility in Iowa, is kind of like a nursing home, but instead of it being full of just old people, it was mostly people with downs syndrome, or blind, or beginning stages of alsheimers… or like McKenna. People that could get up and take care of themselves in ways, but needed “help” with daily living. Now where I live, we have group homes, that are very similar. A group of people like McKenna, that live get up in the morning go to their job (most work in the same place) and have a life of their own – as much as they can. They participate in other activities and always have an able bodied person around just to make sure that they stay out of trouble.

    I read your frustration in your post, but I observed something. You assumed that McKenna is missing out on moments of “bliss” when she’s not with you. It sounds to me, like her ultimate bliss would being WITHOUT having a house full of “intruders” once in a while.

    It’s ok to be apart sometimes, if it is what makes for a more happy and healthy family in the long run. So yes, what I am suggesting is that a vacation without McKenna is ok. Trust me, she’s happier too. It doesn’t mean that you’re abandoning her, it doesn’t mean that you don’t love her. It means that you WANT her to be happy too! If someone makes you feel guilty about that (yourself included dear) then that person is wrong, and their vote doesn’t count.

    I’m not suggesting that you never do anything as a family again, just for every 1 as a full group, you have 2-3 as a smaller group.

    And someday, when McKenna is a full sized grown up, I hope that she gets an opportunity to be out in the world – the best world that she can have for herself – with a place to live, and co-workers, and a sense of accomplishment. Parents don’t sign on for 65 years of raising a child…. I don’t think you have to sign on for that either, and it doesn’t make you any less of a person. There are millions of people living in these situations now, and they are doing well. Please don’t feel guilt because *you* need peace too.

    All above was said with a warm voice and a smile – please don’t take it in any other way.

    *hugs*

  34. tara- i almost never coment, but i love your blog. my heart is hurting for you right now, but i can tell you one thing… if you listen to your heart it will tell you the right answer for you, your beautiful family and for Mckenna. you are such an inspiration to so many of us. hang in there.

  35. Your blog touches me over and over and you do not even know me. I cannot say more than is already said as the best parenting lessons just come from living in the moment that you are in. My parenting skills continually evolve from raising a stepchild, a healthy child and a child that has a severe medical condition. And now a grandchild in another blended family. This was in my email tonight and you mentioned that you saw Train this summer. McKenna may like watching this. I just love, love, love that Daryl Hall gives a free concert every month. I have watched from the beginning and often go back to watch my favorite shows. http://www.livefromdarylshouse.com/index.php?page=ep33 God Bless.

  36. beautifully written–and a testament to what a beautiful, thoughtful, loving, understanding, fun and patient mother you are. ALL of your children are so blessed to call you “mom”.

  37. Tara-You are pulling at my heartstrings!! Thank you for sharing that! I remember when McKenna was just a toddler. You and Jeff were trying to get her diagnosed and trying to get help for her. You FOUGHT for her in a way that I’d never seen a parent fight and that has always stayed with me. Parents need to fight for their children’s happiness and well being. Even though we haven’t seen eachother in YEARS, the years that we were in eachothers lives on a DAILY basis were some of the most memorable learning experiences of my life! I learned so much about being a mother in those years and it was because of you! YOU taught me SOOOOO much about what TRUE LOVE really means! What UNCONDITIONAL LOVE really is. Because the way you were with McKenna was just that! TRUE, UNCONDITIONAL LOVE! We all know that being a parent means you have to have that kind of love, but you did it in such a seemingly effortless, real way. I don’t know if there are words to describe it really. You have to see it. Have to FEEL it by watching you with your kids! And because I have seen you with your kids, first hand (a long time ago, mind you :-) I have FELT it, and my life has been blessed. I have shared your story with many friends who have faced similar challenges with their children. You have inspired them and me with how you treat McKenna, how you love her and how you always want what’s best for her. And you are the same way with your other kids. This post prooves it! You want what’s best for all of them. I’m so sorry you are struggling and in turmoil. I can’t say that I know what you are going through, but what I can say is that I know you well enough to know that whatever you decide to do will be a decision 100% based on the LOVE you have for ALL of your babies! You are still fighting for your kids, just like you did 10 years ago. The only difference is that now your fight has changed from fighting for happiness and well being of 1 child to fighting for the happiness and well being of 4. You are amazing and I know you will figure this out! Much LOVE and PRAYERS coming your way! Love you! -Mar

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