To the Me of Ten Years Ago

22 May
mauramom113003

Maura and Mom 2003

You…yes you, holding that sweet baby girl in the plaid dress.  Let’s chat.

You don’t know it yet, but that sweet baby girl has a secret.  One that will slowly and not completely reveal itself over the next few years.

It’s going to break your heart.  Repeatedly.

But I promise you, it will be okay.

No.  Really.

Sure, you’ll need therapy.  And you’ll get a bottle of Prozac with that therapy.  It’ll help.  It will help you crawl out of the big cloud of overwhelmedness you will feel for a year or so. But you won’t need them forever.

That baby girl’s going to keep you up at night – literally and figuratively.  You will worry over her like no other child has made you worry.  I’ll be honest, you’ll never get over that worry, but it won’t haunt you constantly.

One by one, you’re going to give up on the dreams you had for this baby girl.  The ones of her going to school, going to college, what she could be as an adult.  The furthest ones will fade first.  For a while, you live in the moment.  Eventually, you allow yourself to think a couple of years ahead tops.  Oh, you will plan for her long-term, but in the most generic of ways.  Inheritances.  Guardians.  You even ponder the idea of a group home.  But mostly, you don’t think of those things.  You just take it a few days at a time.  It’s just easier that way.

You will meet all sorts of people because of this child, and their true selves will be revealed.  You’ll learn that some people just suck, some people mean well but should keep their mouths shut, some people are kind but sometimes clueless to what you’re going through.  But you’ll learn that most people, at heart, are good.  This child will help restore your faith in mankind again, and again, and again, just in how they treat her.

You will spend the next nine years wondering how you ended up the parent of a special needs child.  You kind of get used to it, but at the same time, you will never get used to it.  It will be this feeling of constant surprise when you sit back and think about it.  How did I get here?  How did this happen?

No, you will never quite get used to it, no matter how much you do accept it.

You will learn to be a fighter.  You will find strength you never realized you had and overcome your fear of confrontation.  You do this because not doing this is not an option.  That baby girl needs you to be this way. And you’re not about to let that girl down.

You will find that those three amazing kids you had before her?  Are even more amazing than you could imagine.  They will show compassion and understanding beyond their years which will make you proud.

But those three will have to put up with so much because of their sister.  Hours in waiting rooms, stuff broken by her, my inability to multi-task and spread my attention to everyone evenly.  Your heart will break for them, that at a young age, they will realize that they will someday inherit this sister.    But once again, these three kids will amaze you, for they will never resent that little sister.  Be annoyed by her?  Oh sure.  But in normal ways.  Those three little children who would hover around Maura’s bassinet and announce every time she cried will continue to look out after her over the coming years.  They will let you know that you’ve done at least one or two things right.

That little baby girl?  Is going to work so very hard the next ten years to learn things.  Slowly, but surely, she will learn things.   I promise you, she will walk, she will get there.  She will talk too – not great, but enough.  Can’t promise you on the toilet training, but don’t give up, she should get there.

You can’t tell right now, but that baby girl’s brain?  Is going to freak out on her.  She will be diagnosed with epilepsy.  It will freak you out at first.  I promise, promise that it will be okay.  It will not stop her from anything.  In fact, you’ll find out that things will improve for her after the diagnosis and starting medication.  It will quickly go from something scary to something to be oddly grateful for.  And then it will just become something that you all will be able to live with.  Yes, that thing that will be on top of your “Big Scary Things I Don’t Want My Child to Have” list will suddenly be not that scary.

I promise that.

Speaking of medical things, your days of never seeing the pediatrician because your kids are so dang healthy?  Those are over.  You will get frequent flyer miles at the doctor’s office.  You will collect cards of all sorts of medical professionals.  You will learn which blood lab does the best blood draws on children.  You will be able to write things like “epicanthal folds” and “oxcarbazepine” without thinking.  You will also know that as much as you’re dealing with, you’re grateful that is all you are dealing with.  Because there could be more, it could be worse.

Your back is going to spasm out from carrying that child around so much. You’ll end up with tennis elbow from lifting her as a seven year old into her car seat.  You will put on weight from stress eating.  You will lose your mind a little.

It’ll be okay.

Your world will revolve around poop.  Your friends may think you talk about it too much.  They will have no idea just how much you could speak of it.  Don’t worry though, you will discover a small group of other moms obsessed over bowel movements.  And you will be able to over-share with them.

Your life is not going to go as you had vaguely planned it.  It’s going to veer off in a new direction.  People will link you to the heartwarming tale “Welcome to Holland”.  You will hate it.  That’s okay.  You’re allowed to hate it.

You will find out that there are cliques even in the special needs community.  So you’ll start your own damn support group.  It’ll be called “Who wants to get coffee with me?”  It will be great.

You will learn to view adults with special needs in a whole new light.  You will see a man in his 50’s happily buying a coloring book and it will make you think of your daughter.  You will not cry in the store, but later on, there will be some tears.

You will feel so very alone with this child at times.  Sometimes, at home, at night, other times, in the middle of a crowd.  You will feel a cold wave of loneliness that you’re certain no one else will ever really understand.

You will feel jealousy, of other people and their children who are developing normally.  Of their seemingly placid lives that don’t involved fighting schools and doctor visits and poop.

Just remember, you were raised to not whine about things and deal.  And you do.  You will suck it up and deal with it as best you can.  And you will do so with a smile on your face.  Because crying is never an option.

Well, most of the time.

You will write and blog about this child, and her life.  And in doing so, find a whole slew of people out there who say “Wow!  I live this too!” and “Thank you for writing exactly how I feel!”  Somehow, you will become a voice for others and you’ll realize that you’re completely inadequate when it comes to saying “thank you” and still are lousy at accepting compliments.  Work on that, okay?

You will discover that while you never expected to be a special needs parent, you will end up a bit of an advocate for special needs children.  You will wonder more than once how you ended up on top of a soapbox.  Don’t worry, you’ll be okay up there.

You will learn that the guy you chose to marry ten years before?  Good choice.  That man will be the one helping you pick up the pieces when you shatter, will love that baby girl as much as any other child, will take care of life when you can’t, and will still find you sexy even after all that stress-eating weight gain.

It’s going to be the proverbial emotional roller coaster, these next ten years.  You’ll have moments where you’re feeling so high, only to crash back down.  But know this –

You will grow.

You will amaze yourself.

You will let go of fears.

You will embrace the now.

And you will love this amazing, beautiful happy child so much, it will hurt.  And you will be okay with that.

Oh, and that straight hair?  Is going to start to curl.  Go figure.

Maura and Mom 2013

Maura and Mom 2013

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240 Responses to “To the Me of Ten Years Ago”

  1. Eileen May 22, 2013 at 7:15 am #

    Phoebe, you ROCK!

    • phoebz4 May 22, 2013 at 7:36 am #

      Oh, come on Eileen!

      (sorry, had to, LOVE that song!)

  2. Tina Schmidt May 22, 2013 at 7:20 am #

    I can’t actually read this right now…. am already crying two paragraphs in…and I am having my lunchbreak at work… can’t cry here!
    Will leave this for a quiet moment tonight…. Thanks Phoebe, it’s nice to know that there are people that know how I truely feel.

    • phoebz4 May 22, 2013 at 7:37 am #

      Sorry about the tears at work. It seems this post has unleashed a herd of onion chopping ninjas 😉

      • Julie Sparks May 24, 2013 at 7:26 am #

        I don’t know if I’m laughing or crying! Your tribute to your husband made him sound so much like mine, but the “onion chopping ninja” comment almost killed me with laughing! Thanks for the great post.

  3. Mindy May 22, 2013 at 8:06 am #

    Thank you for your blog!! This one hit home for me too. My older brother is 46, awesome and a developmentally challenged adult. Being a parent myself now I have a new appreciation for my parents when they “found out” about him. There is no way to tell a parent who is just finding out that their child will have more obstacles than they could have every imagined that it WILL BE OK. Thank you for putting it so eloquently.

    • eileen e. May 23, 2013 at 5:06 pm #

      Agree with you Mindy. Had a special needs brother who passed away at age 46. As a parent now myself I am awed at what my parents did with grace and love.

  4. Amy Driskill May 22, 2013 at 8:12 am #

    ha the poop comment made me laugh. I do not have a special needs child, but man we’ve dealt with constipation so bad I think she was birthing a child. I love your blog and your honesty. I know we’d love you all if we ever met.

    • rachesunny May 26, 2013 at 3:22 am #

      Hi Amy, sorry had to reply. We’ve been there with the constipation. Looking back it was very funny, not for her, with hubby at one end literally helping it out with fingers and me at other saying ‘push darling, push!!’
      Anyway, poo conversations are some of the best so keep it up
      Rache xxx

  5. sleepymotherof4 May 22, 2013 at 8:56 am #

    You DO rock!!! So many people have told me I should blog but I suck at writing – instead I share your blog and say “this is me” 🙂 Love your blog!

    • phoebz4 May 22, 2013 at 8:58 am #

      lol – it just takes practice. And honesty 😉 FYI, I am much better at writing than speaking. I fear that someday, someone will want me to speak in public and I’ll be all “uh…um…yeah, so…anyway, one time, at band camp…”

      • yasminebijoux May 31, 2013 at 5:46 pm #

        Hi there! New follower here! I came by your blog completely by accident ( for goodness sake I was looking for beading blogs!!) but I must say this was a touching post. I’m only 21, no thoughts on marriage and kids yet butive always found people’s personal heartbreaking stories incredibly …..I don’t know the word for it but it makes my chest shrink, kinda like butterflies in the stomach but u wana cry at the same time.
        I really wish you the best of luck, your daughter is beautiful and so lucky to have a mother like you.
        May God bless you, and from the bottom of my heart thank you for writing and sharing this post for/ with us.

  6. Jessica May 22, 2013 at 9:16 am #

    Indeed, you DO rock!!!!

    • phoebz4 May 22, 2013 at 2:25 pm #

      You are all too much – *blush*

      • Jessica May 23, 2013 at 4:18 am #

        It’s just amazingly written!! Hopefully, a special needs parents, that are just beginning their journey, will come across this, read it and say that, although it doesn’t feel like it at the moment, they’ll survive.

        I don’t have a special needs child. Instead, I tumbled down into a progressive illness with some major neurological issues. I was sure I couldn’t cope, and didn’t WANT to cope. Over time one learns things that one never thought possible. You survive. And at some point, one decides the price of that survival. You go bitter or you try your best. I tried my best, it’s not been optimal but is has worked, hurdles, the proverbial acid baths. All of it.
        All the same. Laying oneself down and give it, is never much of an option at the time.

        You DO rock :)!!

      • phoebz4 May 23, 2013 at 4:34 am #

        Thanks! And all the best to you!

  7. Caroline May 22, 2013 at 11:09 am #

    This made me cry because I thought I was the only one who has felt like this. Thank you:)

    • phoebz4 May 22, 2013 at 2:20 pm #

      I am sending you a great big virtual hug!

  8. Heather May 22, 2013 at 11:22 am #

    Thank you so much for this blog! Your life sounds almost like mine and it’s nice to hear that I’m not the only one going through these things!! 🙂
    Our almost 12 year old daughter was just diagnosed with PKS and she also has 3 older siblings.

    • phoebz4 May 22, 2013 at 2:28 pm #

      Obviously her three older siblings are awesome 🙂

      Going to look up PKS…b/c I don’t know if I’ve actually heard of it…and I’m always keeping my eyes peeled. You never know!

  9. lifeofawillow May 22, 2013 at 11:54 am #

    You. Are incredible.

    • phoebz4 May 22, 2013 at 2:26 pm #

      blushing more – thank you!

  10. shirley May 22, 2013 at 12:18 pm #

    This is amazing: this whole series has been fascinating, as is your entire blog. You write so eloquently about things both big and small. And you make me laugh. And I’ve found cool new music because of you, too. Thank you!

    • phoebz4 May 22, 2013 at 2:21 pm #

      One must have cool music for one’s life soundtrack 😉

  11. HB May 22, 2013 at 1:06 pm #

    Parts of that are so similar to our life it’s eerie. You’ve put to words so well what many of us experience.

    • phoebz4 May 22, 2013 at 2:27 pm #

      I find that the more I hear about other people’s journeys with special needs kids, how much similarity there is, no matter what type of diagnosis.

  12. saracvt May 22, 2013 at 1:20 pm #

    You left out crying like Niagara Falls when beaming new parents introduce their infants to the church and dedicate their offspring to God. That actually happened to me. (It’s sort of like Confirmation was for Maura.) See, I realized that when we had done it, at roughly five months, we still thought the girls were neurotypical. (And there’s a word I didn’t even know existed ten years ago. Now I use it with ease.) And we had that future you mentioned ahead of us. Approximately six months later it started to come crashing down when Olivia failed to meet milestones and was found to be developmentally delayed. Maddy we evaluated just for kicks–guess what? Her too. Now they’re both special-needs. Different diagnoses, but still my girls.

    And we all love Great Big Sea. (Oh–did you wish the Shanty Man a Happy Birthday today?)

    • phoebz4 May 22, 2013 at 2:25 pm #

      No, though I did see it was his birthday – I love that Maura’s falls smack between Alan and Sean’s lol!

      Haven’t bawled in church over it, but did tear up int eh wings with another mom when Maura actually did follow along with the rest of her [neurotypical] dance class mates on stage.

  13. Amber Perea May 22, 2013 at 4:33 pm #

    What a phenomenal post. I hate to admit this…but I’m already plotting my own version right now! Beautiful story!

    • phoebz4 May 22, 2013 at 4:48 pm #

      Feel free to share your version with us!

  14. Christi @ Away From The Oven May 22, 2013 at 5:45 pm #

    Quite possibly one of the most incredible posts I’ve ever read. Thank you so much for sharing.

  15. melissa May 22, 2013 at 5:46 pm #

    Omg thank you so much. I’m not much of a speaker of how I feel. I’m just starting out with my lil girl. She is 4 yrs old and has 4 older brothers. She had a transplant at 9 mths old and trached at 10 mths. She has pulmonary fibrosis and tracheamalacia(sp?). Thank you for putting that out there.

    • Eileen May 24, 2013 at 7:40 am #

      I can almost garuntee that those 4 older brothers will make sure there sister is ALWAYS safe and protect her with every ounce of their being. That’s what brothers (older or younger) do, they protect their sisters. May you and your family be Blessed with everything they need to be help them whenever they need it.

  16. dawnroagain May 22, 2013 at 5:46 pm #

    A dear friend sent this to me, saying that it reminded her of me. She was right. All the way down to the Hating Holland. Thank you for giving me a voice. If I can find the share button thru my tears, I will pass it on to another mom who knows poop.

  17. Kim May 22, 2013 at 5:54 pm #

    Thank you for posting! You have put into words my life that even I so often don’t understand. The roller coaster of life, the joy and the pain. Surrounded by support yet the extreme loneliness of a world that so many don’t truly understand. My daughter will be 21 years old this summer. She has taught me so much and I am very proud of her 🙂

  18. journeeupanddown23blog May 22, 2013 at 6:16 pm #

    Wow, we’ll say! I feel you read my mind, I cry for the true in your words and because I don’t know if he will make it that far my boy is 2 years old last December he has his second open heart surgery and he has Down syndrome. He was a stillborn for 25 min. Came bak and they told us hi has cerebral palsy. All my dreams, normal life and plans were to the trash, it has been a hard and long road. Thanks for yours words they have lift me and I laugh about the poop lol is a classic , thanks for the bottom. Of my heart. . I have a blog but barely I put the name When I do mine will share too.

  19. journeeupanddown23blog May 22, 2013 at 6:32 pm #

    Reblogged this on journeeupanddown23blog's and commented:
    We are not alone

  20. Mary C. May 22, 2013 at 6:40 pm #

    I cried hard…you are amazing! Please keep writing!

  21. Kerith Stull May 22, 2013 at 6:40 pm #

    Wow. I’ve written similar words out to myself, but nothing quite so heartfelt and honest. Thanks for saying it for all of us.

  22. Colleen May 22, 2013 at 6:41 pm #

    I’m crying because you know how I feel. My daughter is 8 and has epilepsy too. I gained weight from the stress. I wish u was those people who can’t eat when they are stressed.

  23. Lisa May 22, 2013 at 6:42 pm #

    Thanks.. I needed this. My son Brandon is 4 and has cerebral palsy. While I can’t relate to all of this, there is so much that really hits home. The worry, the sleepless nights, the knowledge that it could be so much worse, and the sheer joy I feel every time I look at him. (And also the knowledge that some people really do just suck lol) No matter what, I know deep down that Brandon is EXACTLY who he is supposed to be, and he has truly taught me how to be a better person. Thanks again for this post. For once, someone said “It will be okay.” And I actually believed it! ❤

  24. Susan Bailey May 22, 2013 at 6:43 pm #

    Wow. I am crying like a baby after reading that. My baby girl is 20 now, but you spoke the absolute truth. We seem to be living the same life right down to the epilepsy and poop. Thanks for reminding me that we are not alone.

  25. Revell Martin May 22, 2013 at 6:54 pm #

    Thank you from a mother who is 34 months into this journey with her son.
    I’m printing this out so I can read this every tear on his birthday. It helps in so many ways ❤

  26. Donna Turner May 22, 2013 at 7:10 pm #

    All I can say is God Bless You for reading and writing what is in our hearts. My son is about to turn 21 (developmentally delayed to around 6, has autism and epilepsy) and I have a sister who lives semi-independently in a apartment for the elderly and disabled. Again Thank you.

  27. Cynthia Miller May 22, 2013 at 7:17 pm #

    OMG!! I am sitting here bawling!! This hits soo close to home its not even funny!! My daughter is 12 and we have been through almost everything in this blog! Except seizures and the big siblings is a little sister here. Its and incredible and sad thing to see the little sister become the big sister. Just shows how much of an incredible person she is going to be and we can see it at only 5 years old!! I met an amazing man 10 years ago who took me and Kaytlyn on even with her special needs. He is AWESOME!! Thank you for posting this!!!

  28. Mom May 22, 2013 at 7:22 pm #

    Thank you – I am 15 months into it – and in some ways we were lucky because it was a birth trauma so we knew it was coming – sorta. Everything you said we deal with – so I am crying and praying that it WILL be ok like you said – and in 10 years I have the same lookback outlook that you do. Because right now – in the thick of it – well… it sucks.

  29. Shannon A May 22, 2013 at 7:23 pm #

    Aaaand it’s gone viral amongst the special needs community and my friends. Amazing. Very well written and very true. Thank you for articulating what we are all thinking. (And how grateful we are to have friends to talk with about poo! Who knew?)

  30. gmak1953 May 22, 2013 at 8:08 pm #

    I’m a grandma and we are raising our 3 year old granddaughter who is a meth baby and is autistic. We’ve had her since she was 2 months old. This touched my heart so much because I have felt every bit of what you wrote. Thank you. and God bless you and your family 🙂

  31. Laurie May 22, 2013 at 8:38 pm #

    As the mother of 2 daughters with extraordinary special needs– born 11 years apart and with completely different issues– this nearly broke me…in a good way. Every word you wrote spoke to my heart– only instead of the poop comments being about constipation, it is about a 14-year old who still makes in her pants and is physically unable to clean herself appropriately the way a “typical” 14-year old can. I HATE “Welcome to Holland,” and the days of feeling overwhelmed totally outnumber those that don’t– to the degree that anger and resentment seem to be the dominant emotions that control my being. I needed this optimism– especially today– when I was reminded of just how much those dreams I held all my life have been shattered. Thank you for writing this; for the first time today, I actually smiled.

  32. Fran Rissland May 22, 2013 at 8:51 pm #

    Incredible read! I laughed and I cried! My son is 9 and has cornelia de lange syndrome http://www.cdlsusa.org. I love your blog! You are such a great writer! There is a group here in the Atlanta area called FOCUS – families of children under stress. Would love to have permission to reprint in their newsletter as well as the CdLS foundations newsletter. This would touch so many families! If we are able to reprint how would you like it done? Thank you 🙂

    • phoebz4 May 23, 2013 at 4:13 am #

      You may absolutely reprint it. All I ask is that you give me credit with the website address. Thanks!

  33. Annie May 22, 2013 at 9:04 pm #

    This is beautiful. Real. Genuine. This is love. Thank you for sharing.

    I have four children as well, and our fourth was to live with significant special needs after suffering brain damage after premature delivery. For four days I envisioned my life similar to yours above. And then my son’s body failed him at four days old, and we had to let him go. Now I admire families like yours, as I see it as the life I wish we lived. Somehow. Complicated isn’t it? But our love for our children is not complicated. It’s just about the only simple thing for us I bet.

  34. Tina C. May 22, 2013 at 9:08 pm #

    This is fabulous. I’m now parenting my grandchild who is special needs. My step-daughter made some bad decisions in life and my husband (her dad) and I have had custody of her son since last August…we are in the final stages of the adoption process. When we were called by CPS about getting him, we were freeking out….for many reasons. One was our youngest was just going to leave for college for his Freshman year and we were finally going to embark on the “empty nest” life. We’ve had the most unbelivable horrible past 10 years with the 3 older kids (drug addiction, unplanned pregancies, etc…) our youngest was the shining light in our family. Then we got that call – of course we’d take our grandbaby – he needs us. Then they started with can you care for him all the time, until we can find a suitable home… again more fear, but of course we’ll care for him, he’s certainly NOT going to some stranger. He’s been diagnosed with Global Developmental Delays. He’s 3 1/2 but is more like a 2 year old. We thought we’re both over 50 years old, how are we ever going to care for him ALL the time. We’ve already raised 4 kids!! But here we are….9 months later – more in love with this child, and we’re doing just fine. We certainly have our moments, but we’re doing just fine. And this beautiful child, we are celebrating the small moments – moments we never cheered about with the older kids cuz they didn’t have special needs. We took all the little things for granted, cuz they just happened like all the other “normal kids”. But this child, we are cheering here and there. The future, that scares me a little, what’s going to happen, how will he be, will he be able to talk “normally”, can he live by himself, will one of the older kids have to care for him…all the same things you wrote about. But of course our age – how are we going to handle all this with as old as we already are!! That’s where our youngest came in – our Freshman in college – “don’t worry Mom, I’ll be able to care for him and help”. Just warms your heart we obviously have done something right. So Thank You for writing this, We have just been placed into Parentage of a wonderful, loving, happy, special needs child that just melts our heart. Oh and the poop thing….as they say – been there done that with this child!! I never talked about poop or lack of… or even too much (LOL)…with any of the other kids. Obviously a typical topic for those of us in this “boat”.

    • Eileen May 24, 2013 at 8:21 am #

      You both are wonderful caring people. Taking in your grand child (especially when you were ready to start a new journey of your own with the man of your dreams). Your grand child is a very lucky child in his own special way. And your youngest what a wonderful person(he or she) turned out to be. I don’t know of many 19 year olds so mature. God Bless you and your family and always remember, it may not seem like it now but God doesn’t give us more than we can handle. I accidentally came across this website and I have to give all of these parents credit for their honesty, caring and love. I use to work in Family Court and I came across so many parents who wouldn’t even attempt to raise a special needs child or a healthy child. Most wouldn’t even bother to work the program or show up for their hearing. They just gave the baby away like they were a piece of trash and not even blink an eye, go on to have more children, give them to the state to raise etc etc,. So I have to tell you and all the parents on this site how much I admire and thank you for re-arranging your entire lives to give your love to a special needs child. My nephew has Autism and his dad and My brother and siiter-in-law are amazing parents and grand parents. God Bless you all.

      • Eileen May 24, 2013 at 8:24 am #

        I meant to say my nephew’s son has Autism

  35. Maria Watkins May 22, 2013 at 9:12 pm #

    This is WONDERFUL!!! I could have written it myself.. except not nearly as good. 🙂 So glad someone shared this on Facebook so I could read it. Following you now!

  36. Valerie May 22, 2013 at 9:25 pm #

    Thank you so much, your words are many of the thoughts I have had, my son had a hemisheperectomy before his first birthday. My son will be 2 this August, he amazes me everyday! I believe in miracles, I witness him! That’s the greatest of all!

  37. piratewoman May 22, 2013 at 9:38 pm #

    Hi there, I have a daughter who has ADHD, sensory issues, and bipolar, and I could relate to so much of what you wrote here even though the specific special needs are different. Thank you for sharing this. Your daughter is a lucky little girl.

  38. piratewoman May 22, 2013 at 9:40 pm #

    Reblogged this on Hidden Scars and commented:
    I could relate so much to almost all of this! It feels like she wrote my thoughts…

  39. Crystal May 22, 2013 at 10:12 pm #

    Absolutely wonderful! I am the mom of a 15 year old angel, Sierra. You have articulated almost everything I’ve ever felt! I’ve got to stop these tears and get to sleep! Thank you for your ability to do this! Thank you. 🙂

  40. shoe1000 May 22, 2013 at 10:31 pm #

    Thank you for putting life in such clear perspective. Your journey is amazing and I am grateful that I got to share in it, however fleeting and how far the distance physically is between us. Thanks for connecting.

  41. Getty Owl May 22, 2013 at 10:42 pm #

    Thank you.

  42. Lisa Biagioni May 22, 2013 at 11:16 pm #

    Thank you so much. I am new to being a special needs mom and everything you said rang true. how i am feeling everything. thank you so much for putting this out there. I’m going to share it with those who just don’t get what my life has become. you are great please keep sharing your journey. Lisa (mother of 5, my youngest Noah has spastic quadriplegia, epilepsy and hydrocephalus he is 16 months)

  43. ripen13 May 22, 2013 at 11:19 pm #

    Beautiful truth spoken from the heart. Cried as I identified with your words and feelings. Thank you!

  44. ripen13 May 22, 2013 at 11:21 pm #

    Had to read it a second time to make sure I didn’t miss anything through my tears the first time. Beautiful and honest and exactly what we feel … everyday. Thank you!

  45. Stacey Schottler May 22, 2013 at 11:30 pm #

    Oh did you get it right! I have felt this way many times. My daughter is 3 and has CP and hydrocephalus. No one understands unless they are in our situation. Love you words they are beautiful!
    I still can’t stop crying!!!

  46. Autumn May 23, 2013 at 1:16 am #

    This story is by far the closest we’ve ever come to our daughter’s story. It was a very long (out loud) read to my husband as I couldn’t hold back my emotions. We truly can’t believe how similar our cases are because we haven’t met nor heard of another child with remote similarities to our wonderful daughter. Also, the pictures of your angel (especially the most recent one), is the first we’ve seen with such striking similarity. I’m overwhelmed by the possibly that, finally, someone is experiencing what we’ve been going through for 7 years. Thanks to my wonderful sister-in-law who loves our daughter so dearly and is constantly on the search for anything and everything having to do with Aubrey’s condition. I have FINALLY found common ground. The similarity and demeanor of your daughter and ours is striking! God Bless you for sharing your story. I hope to follow soon with a picture of our “Sweet Pea”

  47. liyacount May 23, 2013 at 1:27 am #

    Reblogged this on GoStepAway and commented:
    I almost cried.. Read it bro!

  48. phoebz4 May 23, 2013 at 4:14 am #

    I woke up to 32 new comments! I don’t know if I can respond to everyone at this rate – but thank you for all the kind words and no, we aren’t really alone, are we? We just have to work a little harder to find each other.

  49. María Marta May 23, 2013 at 6:07 am #

    I have tears in my eyes. Very, very touching. Hugs from Argentina. María Marta, Felipe’s mom

  50. Rinker Pit Crew Captain May 23, 2013 at 7:09 am #

    And another voice calls out, “Wow! I live this too!” I still fear confrontation and poop still makes me gag. But the lady in my reflections has handled those things routinely for her daughter, sometimes even gracefully. Thank you for sharing this. Our stories are different, but sometimes the struggle feels the same. :::hugs:::

  51. cheryl May 23, 2013 at 7:52 am #

    I read your blog regularly…I’m there in the thick of it, too. I love this. Thank you for sharing your heart – we mothers on this road, we need each other 🙂

  52. Jo In Utah May 23, 2013 at 8:38 am #

    You have written my heart. thank you.

  53. Amanda S. May 23, 2013 at 8:39 am #

    🙂

  54. Janet Dubac May 23, 2013 at 8:56 am #

    Thank you so much for sharing this! I am amazed with the how excellent the article is and I learned so much from it. It’s a great feeling knowing that I am not alone in this world and that someone is also out there sharing the same failures and successes. You are doing an awesome job! Probably the best I’ve ever read. 🙂

  55. Donna May 23, 2013 at 9:32 am #

    Visceral. Hats off to you and your beautiful family.

  56. Amanda May 23, 2013 at 9:56 am #

    My heart is smiling because of this! Thank you.

    • lisa rubinstein May 23, 2013 at 11:57 am #

      It is and WILL be ok!!! Mom of 15 yo special needs daughter.

  57. Nicole May 23, 2013 at 11:51 am #

    I want to thank you… That voice you speak to yourself with is what I’m striving for. But, the kindness, patience, love and ability to see humor is absolutely required to “be there” for ourselves when life does not go as planned. I hate to see the pain. I have dreams of a kinder world with kinder people, but it is not reality. So, in reading your thoughts to yourself, you are helping me to learn how to mold my thoughts toward myself (I seem to have been better able to show kindness to others, leaving myself a bit neglected) in a manner that will help me continue to be strong through my storm. I have different types of mountains to make it over…hopefully in one piece. But this helps me so very much. Thank you for sharing your experiences. So many hugs to you!!!

  58. Josephine Hance May 23, 2013 at 12:32 pm #

    My great-granddaughter was born with SMA (spinal muscular atrophy) , this is my grandson and his wifes first child. They refused to believe the doctor when she was diagnosed but after many tests had to face the reality that their beautiful little girl, will never be a normal child. She will never walk or use her arms, hands even her voice like other children.. But she warms your heart when she smiles and your blog is very encouraging and uplifting–Thank you for sharing.

  59. Dawn May 23, 2013 at 12:35 pm #

    I have taught little ones with special needs for 37 (yes, 37) years. I have children with Down’s, autism, epilepsy, and many more things. IQ’s 35-55ish. I’ve never read anything quite as good as this to describe the world of parenting a special child. Now I am the grandma of a beautiful 2 yr. old in 1st Steps. She has PT, OT, Speech, deaf role model, developmental therapist, gastric specialist…
    God chooses the best mommies for our kids!

  60. belle May 23, 2013 at 1:57 pm #

    Such honest words and I am sure you have heard this so many times but this could be us. Thank you for sharing your life x

  61. Linda May 23, 2013 at 2:42 pm #

    Wow, I love all of this. I grew up with a special needs sister and learned at a young age there are no guarantees in life with babies being born. I still get right down angry sometimes when I see people who should never have children have normal, healthy children. I have a special needs grandson and I love him with all my heart, but I lay awake nights worry about him and his parents and the stress and worry they live under. I thank God for this little boy and it hurts deeply when he has to undergo another surgery or treatment or therapy that causes him pain. But I know God gave him the right parents and I know that he will find his place in life. I learned with my sister that people treated her as we treated her. She lives in a group home and has friends everywhere she goes.
    It is heartwarming to think that should our little grandson one day need a group home, he
    will hopefully have that choice and good care. I applaud all the parents of special needs children. I wish our world could all be kinder to everyone and all parents would teach their children from a very young age to love one another as they would like to be loved.

    • Autumn May 25, 2013 at 12:43 am #

      Linda, what keeps me going sometimes is the thought that He brings the special ones to the Special ones He knows will provide, love and care for them unconditionally. Bless you for all you’re doing.

  62. Valerie Kavanagh May 23, 2013 at 2:42 pm #

    You are an amazing woman my little woman is four and was diagnosed with angelmann syndrome two years ago we have three gorgeous older children also when I read your letter it was like what has been in my head for the past two years and not being able to explain . I just want to hug you thank you so much for posting. Val kavanagh Ireland x

  63. Mom of six May 23, 2013 at 2:46 pm #

    Thanks so much for voicing all of this. How the siblings deal with this really hit with me. Our “High functioning on the autistic scale” son has 3 older siblings and 2 younger. While he drives them crazy at times, they are his best friends and his worst enemies. But when it comes down to it. Everyone of them has his back. While I don’t know how it will all end up, I trust that God will care for him and that his siblings will help him out as needed.

  64. Kristin May 23, 2013 at 2:54 pm #

    I have an 18 year old with autism. Every now and then, my world shatters a little bit and the fear or worry creep in. But then, always after, comes the joy and the morning. And sometimes a blog post like this comes along to spread some of that understanding and kindness that is so needed. Thank you for your words today. They touched me.

  65. tsartrooper May 23, 2013 at 3:16 pm #

    I hope I am never the person who means well, but should just be quiet. I am new to you and your writing, and I was very impressed by your talent and skill. However, as much as I admired you for your writing ability; I admired you even more for your achievements as a mother. You have raised the bar, and I suspect, inspired many parents to offer a little more love and patience to their children. At the very least, you inspired me. Thank you for sharing a glimpse into your life for those of us who don’t quite understand. May God bless you and Maura.

  66. Rach May 23, 2013 at 4:34 pm #

    Phew , what a relief ! Turns out most of my SEN mum friends hate ” welcome to Holland “as much as I do! Thank you or this revelation !

  67. belle May 23, 2013 at 5:01 pm #

    Thank you from me now and me in a few years. I cried as I read this and I smiled. Honest truths simply spoken with love. Belle x

  68. Lynn May 23, 2013 at 5:40 pm #

    Thank you so much for writing this. I found this through a share on FB. I could have wrote this with just a few changes. Our journey has been 16 long years trying to get just a name as to what my son’s “specialty” is. Being strong and not giving up is what got us answers. So many doctors kept telling us there’s nothing wrong or it’s just ADHD but the older he got the more we could tell it wasn’t “just” adhd. He will never be able to function as an adult so I will have to plan ahead for his future without us. I often think about what my son will be like as an adult I see adults in our community with ID. It makes me sad that someday I won’t be here to watch over him.

  69. Janet Evans May 23, 2013 at 5:57 pm #

    WOW, I’ll be repeating many of the awesome people who have commented here already when I say how similar our lives and stories have been, and how eloquently you have written every word. My beautiful bundle of joy, turns ten in August, thanks to the autism we too live in the here & now, with no long term plans, apart from our wills, securing her (hopefully distant) future without us. However she has no siblings or family who will be around for her then so that was a necessity for our peace of minds now. I feel I’ve relived those painfully slow, yet gigantic steps again, making me realise how much we have achieved and how much my beautiful little girl has taught, not just us, but everyone she meets. We gave up battling the schools systems in March of this year (2013) and home schooling has been the best decision ever. In the past two months, from being doubly incontinent, she is delighted to finally be in ” hig girl hants” (yes that’s how she speaks). She has gone from being non-verbal (from being forced to use pecs and makaton all the time in school) to speaking every request and singing all day. The relaxed and all encompassing education she now enjoys certainly does not entail sitting her down at a desk to do “set work” we think she should be doing. Her education is in everything she shows an interest in, we explore it together, finding websites and games, both online and with household items to expand her knowledge base and vocabulary. The concepts of time & money are real to her now, as we share the tasks, checking the time it takes and adding up the shopping as we go! Our lives have done nothing but change dramatically every few weeks or months over the past nine nearly ten years and these past few months have been the most exhausting but most rewarding. I wish you all the strength and love you need, to keep doing everything you do for and with your family. Thank you for sharing it : D

  70. kellie May 23, 2013 at 7:46 pm #

    Phoebs oh Phoebs…when I read your wonderful blog it makes me miss you and that sweet little Maura with great big hugs so much! You are a great inspiration to all mothers out there special needs children or not. All moms have days when they think they can not go on. Thanks for showing the world they will survive. Miss you lots. Hugs to all the Holmes kids!

    • phoebz4 May 24, 2013 at 3:38 am #

      We miss you too Kellie! Don’t worry, we’ll come visit you guys at some point – my mom lives nearby, remember? Love to you and your girls and Lou/Lew 😉

  71. mrboosmum May 23, 2013 at 10:21 pm #

    As someone only 14 months into this, I was moved and awed by this fabulous post. My son (he has a 5-year-old sister, healthy and hilarious sister too) was born prematurely at 29 weeks. He got an infection (likely meningitis) on day 3 and has brain damage. This has left him with epilepsy (currently controlled), variable muscle tone issues, developmental delays and likely cerebral palsy, but we are waiting a raft of tests in summer. I hope I can write a post as eloquent as this about him for my blog in 9 years. So glad to have found your blog.

  72. Marie May 23, 2013 at 10:38 pm #

    Thank you for writing this, Im currently pregnant with a child who will be special needs, and I hope in 10 years that this will be me with my son. You are truly an inspiration and your daughter is very lucky to have a mom like you!

  73. Ra Timms May 24, 2013 at 5:26 am #

    you took the words right out of my…..heart! We have two children with a condition both rare and devastating. One we have laid to rest last year and we are still on the journey with our other child. No one who hasn’t lived this could write those words and I thank you for putting the words and the sentiments and emotions in the right places. On a day when I needed to get the words out of me before I choked….and here they are. All placed perfectly. How are we supposed to do this again and be alright? But, we will be alright…yes we will because there is no choice. Thanks to your Mothers heart from my Mothers heart.

  74. TC&A May 24, 2013 at 1:55 pm #

    I loved this post so much. It almost made me cry at work! Such a beautiful post. Thank you!

  75. Pan May 24, 2013 at 4:32 pm #

    Thank you so much for sharing this. So many similar feelings and memories. Our son is also 10 and has 3 older siblings! Cried so many tears reading it. God bless you and your beautiful family

  76. specialneedsrealitytv May 25, 2013 at 12:07 pm #

    This resonated so much with me. You will talk about poop. Ha ha, my poor co-worker has to hear it every day. You will hate the essay on living in Holland. Yes, yes, I do. You were able to put into words the journey of being the parent of a special needs child. I often wonder how I got here too. Thank YOU!

  77. scribblechic May 25, 2013 at 3:55 pm #

    If only we could all reach into our past and read such a love letter at the beginning of a difficult experience, lending ourselves greater love and compassion, encouragement and hope. Beautiful.

  78. neverending1 May 25, 2013 at 4:08 pm #

    Your daughter is beautiful and looks like she’s truly loved.

  79. Elizabeth May 25, 2013 at 4:29 pm #

    Beautifully written and insightful. Thanks for putting your story out there, and for all you do.

  80. Lakshmi Loves To Shop May 25, 2013 at 5:17 pm #

    Thank you for that heartfelt and beautiful post… I have tears in my eyes…

  81. aunnielauren May 25, 2013 at 6:59 pm #

    I’m so thankful you shared this. I am not a parent myself, but I have many children with special needs who light up my life. Hugs to you and your beautiful daughter.

  82. juliemumonwheels May 25, 2013 at 7:07 pm #

    For every child with extra needs stand a supper hero that helps them. Your her supper herro. As a person who grew up spending more time in hospital the school that still now receptionist at hospital and doctors know me by name. And Iv become friends with local pharmisist . But having a mum who fight for me as a child and be levied in me is what’s helped me my whole life and got me to where I am now in life. With my two boys who one has ADHD and other has global delay so now I’m a mummy of two children with extra needs. And extra loves as well as extra special amazing achievements. Keep being proud mummy of your four amazing children and yourself.

  83. Angiedaweeze May 25, 2013 at 7:18 pm #

    You are amazing. All 6 of you. I’m bawling. You are my hero. All of you. Thank you for sharing.

  84. mmiller May 25, 2013 at 7:24 pm #

    What an incredible letter…thank you for sharing it. I can feel the sniffles coming on. My daughter is 5, almost 6, and has Lennox-Gastaut Syndrome, a rare and severe form of epilepsy. I’m still trying to wrap my mind around it. Your letter made me realize that others have stood where I stand now, felt the things that I feel now – and TRULY GET IT. That means more than words can say. Thank you…I’m going to follow your blog – I need a fellow traveler 🙂

  85. coffeegrounded May 25, 2013 at 7:36 pm #

    I cannot imagine the sacrifices you make on any given day. My oldest niece is special needs, and I am guilty of saying the wrong thing(s) at times. It is my ignorance, not a lack of love for my niece. I am traveling blindly through a world I do not know. I appreciate you, your family, and my beloved ones, too.
    Keep writing and educating. Thank you for sharing your story.

  86. vidablogg May 25, 2013 at 8:50 pm #

    I choked up a bit reading this. WOW you are a strong, brave and inspiring woman and mother. Although I cannot understand what you go through, however, having worked with special needs children in the past, I admire you because it is very challenging and it takes a special person to endure what it entails caring for a special needs child. God only gives his strong soldiers the special battles, continue being the great-wonderful and strong mother you are to your beautiful daughter. Many blessings.

  87. anordinarymomwithanextraordinarykid May 25, 2013 at 9:24 pm #

    Love! I feel like you are writing about my life as a parent with a special needs child. Not what I imagined my life to be but I wouldn’t change my little guy for anything.

  88. sarahharris87 May 25, 2013 at 10:23 pm #

    Reblogged this on The Thoughts and Adventures of Sarah Harris and commented:
    I thought this was a lovely little post by a mother of a little girl with epilepsy. She writes to herself 10 years ago when her daughter was born.

  89. fargazing May 25, 2013 at 10:27 pm #

    Me, too. Only my little girl is 5, and talking is still a big maybe, and potty training is a definitely-never-gonna-happen, and surgeries are getting so easy that it’s starting to make me question my sanity… But I love her more than anything, and she is everything to me. We’re the moms no one talks about…except the other moms like us. Thanks for sharing. 🙂

  90. lifeofawillow May 25, 2013 at 10:39 pm #

    youre freshly pressed! congratulations! one of my very favorite blogs! as usual, i think you and maura are awesome!

  91. bernasvibe May 26, 2013 at 12:29 am #

    What a beautiful testimony you’ve written..You’ve shared an experience so well in words; that even though I’ve never had a special needs child..I can FEEL your experience. You see I also feel I write better than I verbalize plus! I’m an avid reader..I always feel I get more insight on a person from how they communicate in verbal form..I’m SO happy for you that you’ve found a way to vent & releaseeeee by writing it out..Its what I do also just to deal, hang on!, through the tough times that sometimes come during this life journey…I also write it out when enjoying the sweeeet blissful & joyful moments as well..Your words leaped off the paper & smacked of realism. I was so , so there with you..Nice to see you “use to the fullest” your God-given talent ..and found your niche as an advocate for special needs mothers/children/families. I’m so thankful to have read this. Stay UPlifted and blessed!

  92. getpaidlikerain May 26, 2013 at 1:00 am #

    I love it!

  93. theantileslie May 26, 2013 at 1:33 am #

    I am not a parent, and I don’t know if I want to be. I only say that because I want you to know that your portrayal of parenting is inspiring. It is simply one of the best pieces WordPress.com has to offer. It would mean the world to me if you would check out my writing as well. You’re so top notch that I would love your opinion. Thanks for an amazing read that really touched my heart.

  94. Bek May 26, 2013 at 1:34 am #

    Beautifully written. Thank you for sharing all of this with all of us. Happy Birthday to Maura! My “baby” will be ten in September. Isn’t it stunning, all that we have learned about the world and ourselves and neurology and brains and insurance and education, in the passage of a decade? I don’t think we could cram so much in if we intended to! Best wishes! Big hugs!

  95. suzie81 May 26, 2013 at 3:01 am #

    An absolutely stunning piece of writing… You reduced me to tears!!!

  96. Lara May 26, 2013 at 4:16 am #

    What a beautifully written post! Truly deserved to be freshly pressed

  97. colcolbing May 26, 2013 at 5:00 am #

    A few good friends of mine have special needs and they are lovely people and have taught me not to judge people and to be there when needed. They restored my faith in humanity and you have just worded that perfectly

  98. Robin May 26, 2013 at 6:31 am #

    wow, what a beautiful post. thank you for writing. I’ll plan on reading some of your older posts to learn more about Maura, but just appreciate what you mention about you and your journey and your feelings going through this. I have a son who has some learning “differences” you can say, he’s somewhere on the spectrum, and a severe peanut allergy, something other parents completely do not understand…so between the 2, I can get caught up more in him and lose the me. It’s not easy and so good to read about other mom’s who are doing so well and keeping their sense of humor. 🙂

  99. mayankimd1 May 26, 2013 at 6:39 am #

    a sensible, but true…. moved me from inside… keep it up..

  100. Courtney Eaton May 26, 2013 at 6:47 am #

    Wow!!! What a post, the tears just keep coming…It has been a pleasure to be a part, even a brief part of your lives. Phoebe has such strength and a great sense of humor which of course must be a prerequisite :-). She is an inspiration to all moms even those without special needs children. She truly inspires you to go above and beyond for our children. I can’t wait until we are able to bring our families together again! And Josh…you have always made sure Phoebe has time to herself, at least once a year for a week, I find that AWESOME! Until we meet again…

  101. thesisterslice May 26, 2013 at 6:50 am #

    I clicked on here wondering what could be so amazing about your post….then I started reading and I know!!! YOU. You are extraordinary! Beautiful post! Thank you for sharing your heart and how special you and your daughter really are!

  102. The Rider May 26, 2013 at 7:23 am #

    A huge amount of respect! And thanks for sharing!

  103. kateclarkclark May 26, 2013 at 7:43 am #

    Reblogged this on KateClarkClark and commented:
    Brilliant x

  104. Sammie'sMom May 26, 2013 at 8:01 am #

    So perfect. I love this. Thank you.

  105. Ciera May 26, 2013 at 8:16 am #

    I am only 20 years old but I have an almost 22 month old daughter, who is my world. I just started my blog, barely know how to use it, and happened to click on “freshly pressed” where I read your post. This post is so touching, I am in tears. I have two brothers and three sisters and my first little sister, who is 6 years younger than I, is labeled special needs. Like you mentioned, we were told that she wouldn’t walk, talk, communicate, understand, etc. Being only 6 years old I could barely understand–why was my mom and sister never home? Why did mom never come back to tuck me in? Why did mom stop coming to school with me to volunteer like she did every week? I remember hearing the doctors tell my mom they were going to have to “put her to sleep” for one of her many surgeries and bursting into tears because I thought putting her to sleep was like putting a dog to sleep to put them to rest…I just didn’t understand. Now, now that I have my own child, I can’t imagine what my mom went through not knowing what would come next. My sister developed, walked, and talked, at the normal ages, she has had to have surgeries but it hasn’t stopped her from doing anything! This post humbled me, made me realize how blessed I am to have had such an amazing mother who could raise six children, even through something such as this, and made me so much more grateful of my mother and my healthy daughter.

  106. My Dance in the Rain May 26, 2013 at 8:36 am #

    Thanks for sharing, so many of us can relate. Love your blog, it’s one of my fav’s!

  107. Anna Lea West May 26, 2013 at 8:37 am #

    So, so, so well-written. Amazing.

  108. antsrants May 26, 2013 at 9:12 am #

    An Education in Retrospect- Very insightful. Thank you for sharing what you’ve learned.

  109. David Allen May 26, 2013 at 9:52 am #

    Hi Phoebe!
    What a wonderful sweet post. She may never fully appreciate it, but Maura is so fortunate to have you as a mom.

  110. catharsishungry07 May 26, 2013 at 10:28 am #

    Beautiful. Loved it! 🙂

  111. lumatiza May 26, 2013 at 11:53 am #

    Beautifully done. You brought tears to my eyes as I think about some of my own struggles in my life. I think most people can relate to your powerful experience in some way. Thank you for sharing.

  112. Tina May 26, 2013 at 1:54 pm #

    Beautiful Honest Words. God Bless You <3.

  113. A.J. Goode May 26, 2013 at 2:01 pm #

    This is one of he most beautiful things I’ve ever read. Thank you so much for sharing.

  114. segmation May 26, 2013 at 2:15 pm #

    So cute! Love this. I wonder what it will be in 20 years! Hope you’ll blog about that too!

  115. Toludc May 26, 2013 at 2:23 pm #

    Beautiful poignant writing. Thank you

  116. Harlequin Tea Set May 26, 2013 at 3:29 pm #

    Beautiful post, and beautiful daughter. I hope things become easier for you both, and that the love you share remains strong.

  117. beanyneamy May 26, 2013 at 3:29 pm #

    Still a school student myself, I have no idea what its like for you and what you must go through but this is such a powerful piece and I had to say well done and let you know of how inspiring you are. Best of luck to you and your family with everything in life.

  118. sexymoxiemama May 26, 2013 at 6:33 pm #

    Reblogged this on Sexy Moxie Mama.

    • jensen500 May 26, 2013 at 8:49 pm #

      You are amazing! As the weekend stepmom to a special needs 13 year old, I just want to say thank you from the heart. Although I have been in my step daughters life almost seven years, I still feel very ill equipped at times. I also tend to feel guilty for having feelings of frustration even though she doesn’t live with us full time. You make me feel like I’m not so far off from normal and remind me how blessed I really am. Thank you.

  119. mummyflyingsolo May 26, 2013 at 7:58 pm #

    Oh this had me very teary! Lovely writing on what is clearly such an emotional topic for you. You are an amazing mummy and I am looking forward to reading more of your stories. 🙂

  120. Kate W. Hall May 26, 2013 at 10:02 pm #

    Amazing, mom. And you’re an amazing mom!

  121. Kelly DeRonda May 26, 2013 at 10:37 pm #

    Wow! I saw the link on a friend’s FB page, and the tears starting flowing for me…. I am the eldest of 4 children, and my special sister, Erin, is 42 now. My childhood was filled with babysitters, even after I began babysitting for other families. Back then, I was resentful, thinking my parents didn’t trust me to care for her. Now, I know they were trying to shield me from the responsibility of caring for her. My parents are amazing people who have raised a special needs woman in the most normal way, and I am so blessed to spend lots of time with her! Thank you for sharing!!

  122. dancemom97501 May 26, 2013 at 10:52 pm #

    Thank you!!! I have a son with Asperger’s, bipolar, and ADHD. Life has not been the easiest thing since his third birthday. He’s 20 now. It’s great that I can look back over these past 17 years and reflect. I can’t remember everything because my mind has blocked some of th bad times. Just know that you’re life and children are a gift from God and he will never give you more than you can handle.

  123. hopeinaheartshape May 26, 2013 at 11:19 pm #

    Thank you, thank you for giving me permission to hate the “Holland” story! I have a daughter with a severe heart defect that she will eventually need a transplant for someday. I have similar feelings and am so appreciative when other people can put words to them when I can’t even figure out what the heck I am feeling half the time. I hope my daughter will walk someday and I need to remember that I can’t see into the future as much as I think I can. Thanks again!

  124. cafeterraceatnight May 26, 2013 at 11:54 pm #

    Thank you for sharing your experiences in this post. I have a few friends with special needs kids and I always admire how they learn to cope with things along the way.

  125. Johnny Walker May 26, 2013 at 11:57 pm #

    She is beautiful! I know you are so proud of her!

  126. siobhankburke May 27, 2013 at 12:31 am #

    Moving and painful and sweet all at the same time. You and your lovely family are rock stars! 🙂

  127. Soumya May 27, 2013 at 1:05 am #

    You are amazing!
    Thank you for writing this.

  128. tiredella May 27, 2013 at 1:28 am #

    Wow, this was really amazing! You seem like a really incredible person. You’ve just inspired me to write one of these to myself, me of ten years ago, and I’m going to write one right now, to read in ten years about what life is like now. So thank you!

  129. warmginger May 27, 2013 at 1:33 am #

    Simply the most beautiful and moving piece of writing I have read in a long time.

  130. warmginger May 27, 2013 at 1:36 am #

    Reblogged this on Warm Ginger and commented:
    From the heart to the page. A simply beautiful piece of writing.

  131. zoelawson May 27, 2013 at 2:12 am #

    I grew up with a sister, 7 years older than I, with a mental disorder similar to Turners Syndrome. It was tough growing up – my younger sister and I never really understood her condition and would actually taunt her for it… obviously I’m ashamed of my childish actions, and have grown since then. I love her so much. This story is amazing, I wish you the best of luck and a long, happy life for the two of you.

  132. Lindsay McLoughlin May 27, 2013 at 2:12 am #

    What an astonishing post! I love the “you” of ten years ago, and I love the “you” now. Thank you for illustrating so beautifully your love for all your family through this gorgeous post. I was absolutely charmed. Best wishes to you all as you move forward.

  133. Kelli May 27, 2013 at 8:34 am #

    My son is special needs, not epileptic, however feel and have felt so many of the same feelings. I am a single mom, and terrified if the future, but thank you so much for your words. Truly inspirational.

  134. ChangeTheWorld May 27, 2013 at 8:36 am #

    Beautifully written. Thank you for all that you are doing for your daughter- you’re strength is evident in this post.
    http://stepstochangetheworld.wordpress.com/

  135. Andrew Thompson May 27, 2013 at 10:46 am #

    Thanks so much for posting To the Me of Ten Years Ago. I really enjoyed it, and as the parent of a child with special needs can relate. Again, Thank you and best wishes-Andy

  136. Olori May 27, 2013 at 11:04 am #

    This is so beautiful, it’s heartbreaking and soul-lifting at the same time. It just screams hope for parents with special needs kids. Your little girl is so beautiful. May God give you the wisdom to be a perfect mom for her. Bless your heart! xoxo

  137. Minty May 27, 2013 at 3:09 pm #

    Tears, tears, tears. So moving and beautiful. Lovely peice. I could never truly understand but thank you for sharing.

  138. beanbrigade May 27, 2013 at 3:56 pm #

    This really touched me. Thank you for sharing! This is something everyone should read. Puts a whole new perspective on things.

  139. sarafripp May 27, 2013 at 4:46 pm #

    Reblogged this on sarafripp's Blog and commented:
    Know how you feel. Isolated even in a crowd… you sound like s very strong lady xx

  140. allchildrenbutonegrowup May 27, 2013 at 6:01 pm #

    You’re an inspiration.

  141. Jackson Williams May 27, 2013 at 7:22 pm #

    Reblogged this on New American Gospel! and commented:
    This is wonderful/beautiful, had to reblog. Cheers. — J.W.

  142. Ama May 27, 2013 at 7:26 pm #

    And sometimes, all you can do is pray.
    Great post, incredible and courageous sharing 🙂

  143. leejacobs May 27, 2013 at 7:43 pm #

    Awesome! Thank you for sharing yourself!

  144. inchargemom May 27, 2013 at 7:55 pm #

    What a great way to return to the you of yesterday…I loved the voice you used in your post. And I loved reading all the love there too.

  145. Donna May 27, 2013 at 9:52 pm #

    I worked almost 20 years in a Group Home in Oregon. Retired almost 3 years ago. This was a beautiful warm story you wrote here. The parents of my people went through years of laughter and heart ache.I hope you never let another Dr. tell you what your daughter can’t do! They can learn to do so much. Stay strong !

  146. diynavymomma May 28, 2013 at 12:29 am #

    This was heart touching! ❤

  147. joythayer May 28, 2013 at 12:53 am #

    Loved your post. Thanks so much for sharing. My son is severely mentally and physically disabled. http://thejoyofimperphection.wordpress.com/2012/10/06/disabled/ He has been an inspiration and is the light of my life.

  148. seventhvoice May 28, 2013 at 1:56 am #

  149. seventhvoice May 28, 2013 at 1:57 am #

    Reblogged this on seventhvoice and commented:
    ❤ ❤ ❤

  150. awindowofwisdom May 28, 2013 at 2:33 am #

    Your words opened a window for me and I am sure for many others to see the depth of what you and many others endure, you spoke beautifully and straight forward and it really touch my heart and opened my eyes with deep compassion and love for the role of a parent, I have not walked in your shoes but what you wrote made me feel like I put them on. I wish you blessings and send you love. I could hear your heart in your words and I could see why you were chosen for this task. You are amazing.

  151. creativestarr May 28, 2013 at 4:51 am #

    Your beautiful expression of your experiences are so clear, reading your words gave me a true insight into your world. Thank you for sharing.

  152. A Morning Grouch May 28, 2013 at 6:28 am #

    Beautiful. The letter, and the hair.

  153. limseemin May 28, 2013 at 7:48 am #

    You make my tears fall. So sad 😦
    By the way, following you now 🙂

  154. Daily Post from Bluxome Street May 28, 2013 at 8:35 am #

    Reblogged this on Bluxome Street Post and commented:
    I loved this blog on reflections raising a child with special needs. One of my close friends has down syndrome so I follow blogs and pay special attention to these types of posts.

  155. Grainne May 28, 2013 at 8:46 am #

    Oh my goodness…I wish there was a ‘love’ button I could hit. What an amazing post…I have goosebumps covering my skin. Special needs children are a blessing in a whole different way. In some ways they are stronger than us, more adaptable and willing to fight. My son has taught me these lessons over the last nine years. Thanks for sharing this beautiful post to remind us all of how lucky we really are.

  156. Trish Z. May 28, 2013 at 9:06 am #

    I don’t even know what to say…this is touching. I found your blog because of the title…I admire people who can acknowledge growth and acceptance as they walk through a challenge.

    I’m touched by your words, your story, and your eloquence. Many in the same situation are blessed to have you as their voice. Your children are blessed to have you teaching them compassion. Your words help me better understand my two friends who have adult children with special needs. I don’t think the general population “gets” your true struggle. Thanks for being vulnerable and sharing your story–it needs to be heard 🙂

    Oh, and by the way, I happened to see a post above about your fear of public speaking. I’d be happy to virtually coach you (I am a former competitive speech and debate coach with a lot of coaching experience), pro-bono, of course, WHEN (not if) you are asked to speak. Your voice here is so poignant and profound, that it WILL be public from the stage one day soon. I don’t say that to scare you, but to let you know it will be okay and there are many that believe in you and the HUGE NEED for your message. Don’t hesitate to contact me 😉

  157. hayleyslilworld May 28, 2013 at 11:50 am #

    What a heartfelt post.

  158. prshty May 28, 2013 at 11:53 am #

    Wow…Hats Off…:(…:)

  159. ועד פסיכומטרי May 28, 2013 at 2:53 pm #

    Very touching and heart warming. I loved reading this post, thanks for sharing this!

  160. Permission Slips May 28, 2013 at 5:38 pm #

    Wow. Beautiful, heart-wrenching and painful all at once. Thank you for this view into my mother’s life. It was eye-opening.

  161. foodnlove0412 May 28, 2013 at 8:47 pm #

    Thank you so much for this post! It’s nice to hear my feelings over the last 9 years be put into words. I don’t have many people to talk to who really understand what I’m going through so just being able to read this has made me realize that there are others out there, and they do understand and it really is going to be OK. 🙂

  162. caravanserai230 May 28, 2013 at 10:19 pm #

    Fantastic post – thank you for sharing. All the very best to you and your family.

  163. moodsnmoments May 29, 2013 at 12:39 am #

    your blog did say one thing out so clear and almost loud – she is special and lovable!!! you are so strong and an amazing source of strength to her. sending my wishes for an adorable future.

  164. nelliejenkins88 May 29, 2013 at 1:09 am #

    This was perhaps one of the most touching blogs I have read in a long time. You have a heart few could hold. God bless you and your beautiful family.

  165. Stéphanie May 29, 2013 at 5:31 am #

    She’s wonderful. And both of you are very touching.

  166. RFC Blogger from Bridgend May 29, 2013 at 7:38 am #

    Like NellieJenkins – I think this has to be one of the most entralling posts I have read. I read every single word – beautiful writing! Really humbling so much so that I can’t summon up a worthy comment except maybe thank-you.

  167. hellobutter May 29, 2013 at 12:24 pm #

    Great post! Completely hit home, actually just wrote about my own kiddos that amaze me everyday!

  168. bubliibeauty May 29, 2013 at 12:42 pm #

    one of the most best posts I’ve ever read. Thank you so much for sharing

  169. sspmaid May 29, 2013 at 2:01 pm #

    You are amazing. Thank you for reminding me why I love my day job. Some people are lucky they will never know the importance of poo until it stops.

  170. bbrunophotography May 29, 2013 at 3:55 pm #

    This is one of the most honest pictures of parenting a special-needs child that I’ve ever read. I thought of my daughter and son-in-law throughout, and the joys and heartache they’ve experienced for the last ten – yes, TEN – years, since their precious middle child was born with multiple needs. As her grandma, I’ve shed a lot of secret tears as well, but the utter joy of having our lives turned inside-out by this incredible gift from God has far outweighed what we have “lost”–because truly, we have gained such a rich dimension that many never get to experience. We’ve learned lessons we thought we’d never learn. And we’ve (as you mentioned) gained a compassion for others in the special needs community in a way that probably would not have been this deep, if not for this child.

    Your post blessed me today. Thank you.

  171. everythingthatshimmers May 29, 2013 at 7:55 pm #

    Phoebe, it is so comforting to know someone else gets it….someone else is living it….and powerfully pushing through, while celebrating all the goodness that is to be treasured, and honestly identifying with all that fades away, all of the changes that occur when life happens. These were just the words I needed today.

  172. AncesTrees May 30, 2013 at 7:37 am #

    I don’t just like this, I love it. As Nana to three special needs grandchildren, I can see my daughters and their children so clearly in your blog. Courage and blessings for all you do.

  173. onemindfulstep.com May 30, 2013 at 8:19 am #

    Thank you for your courage in writing this beautiful and vulnerable post. It is profound the way you have stepped back and observed your life and thoughts with eyes of such tenderness and kindness. You are showing us an important and restorative way of being, and I wish you continued continued self-compassion for the “me you are” from moment to moment.

  174. oliviasantamaria May 30, 2013 at 2:42 pm #

    🙂

  175. jasonbladd May 30, 2013 at 11:09 pm #

    Inspiring post

  176. likkian May 31, 2013 at 3:18 am #

    Ohh this is so touching and inspiring. What a great mom you are! I know all about “meeting people who’ll later expose their true selves” in this context. It hits the nail on the head. Keep it up!

    Emily
    {Photography and Wisdom}

  177. mandea2013 May 31, 2013 at 3:43 pm #

    Thanks for this great article. Know some of what you’re going through!! Have a beautiful special needs son and can relate. I am praying for you and your beautiful daughter. Thank God that He gives the strength to carry on each day.

  178. mariner2mother May 31, 2013 at 4:14 pm #

    I am so very glad to have perused Freshly Pressed today. I rarely do. What a wonderful tribute to yourself and to the growth you’ve made. I look forward to reading more of your writing and experiences.

    I have found, in my own life, that because of the son I had 10 1/2 years ago, I have stretched and grown as a person more than I could ever possibly imagine. Because my son’s delays and issues aren’t very extreme (but are definitely there), he’s been a sort of fly under the radar type of kid in a lot of ways. Nevertheless, there were years that I was worn to a nub emotionally and physically, every day, to the point of depression- that thanks to my primary care doctor, who blew me off about this, went undiagnosed for at least 5 years. (She is no longer my doctor). I hope you take it as flattery if one day I write a letter to the me before I had my son. Fantastic idea.

    • mariner2mother May 31, 2013 at 4:18 pm #

      Oh, and I can absolutely relate to the being so concerned about poop. We were very lucky in that our trials and tribulations with my son and pooping were only 4 years long, and his issues were able to be cured with an Energy Therapist.

  179. Julia S. June 2, 2013 at 9:33 pm #

    This was written in such a brave and beautiful way.What an amazing mama you are!

  180. MelvaD June 4, 2013 at 7:12 am #

    Thanks for sharing this. I don’t have a special needs child, but it helped me put things in perspective. When I encounter parents with special needs children, I will remember this post and try to be more understanding. I wish all the best for you and your family.

  181. charlottecoast June 5, 2013 at 2:08 am #

    Absolutely beautiful and well written. Well done.

  182. kerindat June 6, 2013 at 4:42 am #

    I am so very much able to relate to this. I am glad I read Freshly Pressed today, and was able to read something so personally relevant and well articulated. And I hate Holland. And poop.

  183. Gia June 7, 2013 at 8:35 am #

    This is very moving x

  184. Cecy García June 8, 2013 at 10:50 pm #

    Congratulations! you’re doing an amazing job. Thanks for share your life experience it´ll empower a lot of families!

  185. Pauline June 11, 2013 at 3:08 pm #

    Thank you for sharing. It makes me think about my own late parents and what they went through with my brother.x

  186. Simple Northern Life June 11, 2013 at 10:01 pm #

    As a special education paraprofessional, finally someone to voice what it is like for parents of a special needs child. I often wonder what it is like 24/7 when your child is not with us during the school year. I can only wonder up until now and still have not got a grip on what it is like as a parent and sibling. Thanks so much for such a well written post and be can be sure that I will pass this along to my collegues at the school district that I work for, God bless!

  187. reocochran June 14, 2013 at 11:51 pm #

    So Special, Congrats on being Freshly Pressed! I enjoyed my visit!

  188. Jen June 24, 2013 at 5:19 pm #

    Phoebe, thank you! You have summed up how I also feel a lot of the time as a mom of 2 girls with special needs. I so identified with this!

  189. knothdurft June 25, 2013 at 3:43 pm #

    i don’t know you, but i love you! thanks for speaking for so many of us!

  190. teresamcnally July 7, 2013 at 9:38 am #

    This is so moving phoebe. Teresa x

  191. Sarah August 6, 2013 at 12:20 pm #

    “People will link you to the heartwarming tale “Welcome to Holland”. You will hate it. That’s okay. You’re allowed to hate it.

    You will find out that there are cliques even in the special needs community. So you’ll start your own damn support group. It’ll be called “Who wants to get coffee with me?” It will be great.”

    brilliant!

  192. namasteliving August 28, 2013 at 11:00 pm #

    Beautiful. I’m literally speechless.

  193. QRL November 18, 2013 at 1:15 pm #

    I am a social worker who has worked in the field of developmental disabilities and have advocated for both children and adults with disabilities for over 25 years and have always been the resource go to person for services and supports. You have given me new insight to your world and made me look at things from your perspective. Thank you for sharing, maybe it will make me better at what I do.

  194. M shaffer December 5, 2013 at 2:11 am #

    I wanna get coffee!! I’m so glad to come across this. Very well said. It fits my life except with a boy. Thanks so much for sharing and letting us know there are others going through the same emotions, struggles, & loneliness!

  195. Elizabeth Bongiovanni June 17, 2014 at 11:16 pm #

    It is as if you have read the story of our life with a special needs daughter named Aurora… and my three other children. Even the “trip to holland” OMG!! You nailed it. I pronounce words like oxcarbazepine phonetically and completely wrong, so I can remember how to spell them correctly.
    This was such a tug at my heart. Directly. Thank you for your empathy. It is greatly is appreciated.

  196. MindyK June 18, 2014 at 12:04 am #

    I came across your blog not knowing what I was clicking on. The title sounded interesting. Little did I know how connected I would feel to what you wrote. Thank you for writing this.

  197. Kacie June 18, 2014 at 7:39 am #

    Such an amazing post. I cried because I know it is all true but also because someone else understands. Reblogging.

  198. Kacie June 18, 2014 at 7:43 am #

    Reblogged this on Failure to Thrive and commented:
    Phoebe nails it!! This is such a moving piece about the evolution of being the parent of a child with special needs. I know it will be OK because it has to be but that doesn’t mean it has to be easy. Thank you to everyone who understands or who tries to understand.

  199. Jackie June 18, 2014 at 10:28 am #

    I have a swarm of thoughts and feelings I want to write in reply you your post, but I can’t quite conjure up anything remotely sensible at the moment. You had me at epilepsy and then again at thinking of your daughter while watching a grown man happily purchase a coloring book. I’ve totally been there…in fact, even though my daughter will be 18 next month, I’m still there!! There are several differences in our stories, but many of the thoughts and feelings are identical. Thanks for putting it all into words. 🙂

  200. Defne June 23, 2014 at 12:59 pm #

    Dear Phoebe,

    My sister Mine had cerebral palsy. We lost her almost a year ago (Friday will mark the anniversary), and everyday I feel like the world lost an angel and my family lost its most precious member. While I am not a mother, your post made me think of my mom and how she coped with being the mother of a special needs child. It is a hard battle, but worth every fight. I wish you the longest, healthiest and happiest years with your daughter and the rest of your children.

  201. Nancy Westcott June 26, 2014 at 4:24 am #

    ❤ Love, love, love. My little girl in the plaid dress is now a fabulous 8 year old boy

  202. Marisa Johnson July 10, 2014 at 12:34 pm #

    I first read this article a few weeks ago, and it stuck with me, as I have a daughter who has Autism Spectrum Disorder. We were given the news that her short EEG she had showed signs of her brain misfiring. We were told she could be experiencing seizures and were giving the warning signs. Last night, she had a seizure. I feel so very confused, and a still a little spooked from seeing my nearly 5 year old unresponsive. I came here today, to reread this article for probably the 4th time. It gives me inspiration, it gives me hope. Thank you for writing such a beautiful entry.

  203. Geri Booth August 18, 2014 at 12:47 pm #

    How on earth did you get inside my head and write everything I feel???
    Beautifully written. Thank you.

  204. Kristen Hawkins August 18, 2014 at 7:26 pm #

    Great writing! I am mom to a 16 yr old with Rett. It took almost two years to get a dx. I wish you continued strength and good humor on your diagnostic odyssey! You have a wonderfully frank and endearing quality to your writing that I admire greatly. Thank you for putting into words what so many of us parents of special needs kiddos are feeling (but are too exhausted to express ourselves…lol) My favorite part of your blog post? Poop talk of course! It’s amazing how you meet another mom with a similar child and in no time your chatting about poop like old friends! Seriously that part did make me “laugh out loud”!! Please continue sharing your insights with the world. We need voices like yours. Take care!

  205. Deb May 26, 2016 at 2:49 pm #

    Thank you. The article was so dead on what I feel, and as always, realizing we are not alone is helpful. Reading the comments helped as well, as I had thought my husband and I were the only grandparents raising a special needs child. Our six year old Emma has Angelmans syndrome, and her neurotypical brother, age four, have been with us a year. A hard year, but we are surviving, making progress and finding that happiness is indeed possible despite great stress and challenges. Thank you again!!!!

  206. Erin May 27, 2016 at 7:46 am #

    Being the mother of 12 year old twin girls with Angelman syndrome.. just want to thank you for this article. Sometimes I have stop and remind myself that I’m not alone when I start to feel that way. Being the parent of special needs children is the hardest thing I’ve ever had to do but it’s been the most rewarding experience in my life!

    • phoebz4 May 27, 2016 at 10:14 am #

      Nope, we are not alone! I’m so glad you found this post 😀

  207. Amy W June 3, 2016 at 11:48 am #

    As I sit here crying in the hair dressers, I just have to say thank you for this post. It resonates with me in so many ways (right down to the straight hair going curly). You put words to much of my feelings. Thank you for sharing and letting me know I am not alone.

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