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Realistic Optimism

18 Jan

It was my therapist who dared to say it to me for the first time.  I had Maura with me during that session – cute little three year old Maura, being her happy self, wobbling about and probably sucking her thumb.  My therapist looked at her, and said “You do realize she’s probably going to live with you for the rest of her life?”

I blinked.  Then answered as matter-of-factly as she had stated the question.  “Yes.”

And at that moment, I knew it was true.  I didn’t feel despair.  I didn’t feel grief.  I didn’t feel anger.  I don’t think I felt anything negative.

Just relief.

I know that sounds weird.  “Why would you feel relived that your child was going to be too impaired to live independently?” one could ask.

The answer is that at that point in time, no one bothered to address the big polka dotted elephant of “she may not catch up” in the room.  We all knew it was there.  It was hard to miss it there.  But instead of addressing the elephant of possibility, people tried to cover it up with blankets of “Hope!” and “Maybes!” and “Who Knows?” , and threw a lot of “Have you tried this?” at me as a distraction.

In the beginning, we were told that maybe Maura could catch up by kindergarten.  That her delays were just that – delays.  There was a time I got caught up with all the “You MUST try THIS!” hype thrown at parents of children with delays.  I tried the supplements and special toys and therapies.  The therapies did help a bit – but progress was still at a snails pace.  Still I was told “Well, you need to do PECS!” and “What about sign language?” and “Have you tried this NEW therapy?”

Do you know how overwhelming it all is?  Do you know what kind of blame and guilt a mother can put herself through because her child doesn’t catch up despite shoving fish oils down the child’s throat while watching “Signing Time” videos in hopes that they would produce words?  Only to show up to evaluations and have little progress made?

I remember those days vaguely.  At first, I spent too much money looking for the magic toy that would stimulate her brain just right so that something would spark within there.  Then it was trying to find a label for her issues, so I could then find out how to fix them.  And with that came  the fights with insurance companies to pay for doctors or therapies – plus fighting with places to get the actual therapy.

It was frustrating, expensive and depressing.  Which is how I ended up with my own therapist.  Who one day said “Hey, there’s a big polka dotted elephant in the room – have you noticed?”

I had to admit, I knew the elephant was there.  I just never wanted to look at it.  Part of me wanted what everyone else kept saying to be true – keep the faith, keep doing all you can, and your child will be the one to beat the odds and become normal once again!

But once forced to look at the elephant…well…the elephant wasn’t that scary.  The idea that Maura could live with us forever wasn’t either.  Maura was a delightful child, who loved going places and trying new things.  She was easy going and able enough.  It wasn’t “ideal” – but I knew it could be worse.  If I had to live a lifetime with a child, Maura was an ideal candidate.

Admitting all this was a bit of a relief.  I could look something once unthinkable in the eye, confront it, and walk away unscathed.  It wouldn’t be the only time I’d have to deal with Harsh Reality when it came to Maura.

It also meant that if she didn’t progress far enough between evaluations, that I hadn’t failed.  We also didn’t feel the need to cram a thousand therapies into our lives.  We could enjoy life, teach Maura at her pace and give the attention the other three children in the house needed.

It seems like though, that when I tell people Maura will live with us forever, I’m admitting to giving up on Hope.  You MUST have Hope!  Hope keeps you alive and moving forward!

Which is true.  But Hope can also cause you to have your heart broken time and again.

If we had held on to the Hope that Maura would catch up by kindergarten or so, like we’d been told time and again, we would have been setting ourselves up for some intense heartbreak.  Because not only did she not catch up by kindergarten, she was further behind than we’d ever dreamed that first year of therapies.

Maura started kindergarten with the mental age and capabilities of a two year old.  She was not potty trained.  She could not speak in sentences.  She needed a full time aide to be with her, to do things like change her diaper, open her lunch containers and be by her side if she had a seizure.  Maura starting kindergarten was traumatic enough for me – it brought me to tears a few times.  I can’t even imagine how much more traumatic it would have been if I had held onto the Hope she’d have caught up by then.

All that said – I haven’t given up hope.  I just don’t believe in the shiny happy feel good Hope!  I am realistic about my daughter, but always optimistically realistic.   We work with her to achieve as much independence as possibly while planning  for her long term care.  We challenge her to prove us and everyone else wrong, while realizing that in some instances, we’re right.

See, we can teach her things, and help her be more self-sufficient.  But we can’t do anything about her maturity, or lack of.  That portion is out of our control.  In many ways, Maura has the independent streak of any 8 year old, coupled with the immaturity of a 3 year old.

There was a day a couple of summers ago, when Sean and Maura were out in the front yard.  Sean had a long rope that he was twirling about.  Maura – in true puppy form – started laughing and chasing the rope as Sean dragged it across the lawn.  Josh watched them for a moment and said “Yeah, she’s going to live with us forever.”

And then we laughed. Because sometimes, all you can do is accept something with a laugh and make the best of it.

Which is what we have chosen to do.

 

 

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57 Responses to “Realistic Optimism”

  1. Regan Brown January 18, 2012 at 6:10 pm #

    I have to tell you that each of your postings about Maura warm my heart & fill me with realitsic optimism. My daugher Emma is “delayed” and just started kindergarten this year. To say that it was/is/continues to be rough is to put it very mildly. We don’t know what Emma’s level of “achievable independence” is yet, but I am very aware of the elephant in the room…I’m just not sure what color its spots are yet.

    • phoebz4 January 18, 2012 at 6:14 pm #

      I’ve decided the spots are whatever your child’s favorite colors are 😉 So ours has yellow, orange and bright pink spots! And some may be sparkly. We like sparkly.

  2. Nancy Spivey January 18, 2012 at 6:15 pm #

    I thoroughly enjoyed reading this, and I say bravo to you and your family. You most certainly should not let go of hope, but the hope that “your child will be the one to beat the odds and become normal once again!” is maybe just not the right hope. Or maybe “normal” isn’t the right word. It sounds to me that you are doing a wonderful job raising Maura, and my “hope” for her and for you is that you continue to be happy and enjoy each other as much as you obviously do now.

    Sure, it’s not “ideal”, but what is????

  3. Amy Silverstein January 18, 2012 at 6:22 pm #

    jI love your acceptance for Maura the way she is and that you are not trying to “fix’ her. I am a special ed teacher in a middle school self-contained ESE classroom. The students that are the happiest are the ones whose parents let them be who they are and celebrate the small victories in their life with them. Too often I find that my students go home after an exhausting day only to be faced with excessive tutors and therapists. I believe in teaching my students self determination and independent living skills. Academics have a role, but there is more to being “smart” that being able to read difficult passages and complex mathematics. You are doing a great job!

  4. Mara January 18, 2012 at 6:28 pm #

    Realistic optimism, I love that idea. I never thought that those too words could be side by side, but it works 🙂

  5. Jackie January 18, 2012 at 6:35 pm #

    I have been reading your posts for a few weeks now and I love them. My daughter sounds a lot like yours….just a bit older. No formal diagnosis on the delays….just delayed. My life too became so much easier with her when reality finally came to us and we stopped “trying to fix her” and just let her live. That is not to say we don’t continue to do things in a therapeutic setting for her,but we do things that she likes (yoga, swimming,dance class). All things that help her nut most of all she is having fun. We too know that she will live with us forever…not a bad thing at all. We always try to find humor in our situation too..my mom always said laughter is the best medicine…and it is….it is not always easy to find the humor, but our kids make us find it. Keep on blogging and I will keep on reading!

    • phoebz4 January 18, 2012 at 6:49 pm #

      Thanks! It’s funny these days, how often I hear “Wow, your daughter sounds like mine!” Obviously, there are a lot of little rock stars out there 😉 My mom always said “You can laugh or cry about it” – and since crying makes me all puffy eyed and blotchy, I choose to laugh.

      • Lorraine January 19, 2012 at 4:26 pm #

        I am the mother of a 22 year old atypically autistic daughter Kim. We went through all the phases – diagnosis, treatment, programs, therapy and now we accept her just how God made her. She is happy and healthy.

        We tried forcing her to do things with us as a family, but she was reluctant, defiant and downright scared – no movie theatres, no vacations etc… Now, we no longer try to force her to do ‘our’ things.

        I don’t know what I would do without her.

  6. Candi Schempp January 18, 2012 at 6:36 pm #

    Love the way you’re able to grab a whole lifetime’s worth of wisdom out of your experiences and then just put it out there. I did not spend a whole lot of time or energy trying to “fix” my daughter, but I had a handful of other “special needs’ moms” who did just that. I did my grieving very early on, and sometimes when I’m feeling very selfish, I still get discouraged about what MY future looks like, but for the most part our slightly older elephant is discussed plenty. I think one of the differences for me, and possibly for you, is that my girl is one of many siblings. This means that I didn’t really have the time or energy to put into all her many therapies and diets that were thrust at me. Plus, I knew each of my children had their own strengths and weaknesses, and who was I to force them all to have the same outcome? And you definitely hit it straight on when you said that ” If I had to live a lifetime with a child, Maura was an ideal candidate.” I have 3 teenagers, n)ow, and 2 of them can move out ANYTIME and I would be just fine, but my lovely Allison may cuss me out, but she doesn’t actually have the vocabulary, and her zingers are never intended to hurt me;

    • phoebz4 January 18, 2012 at 6:47 pm #

      “Love the way you’re able to grab a whole lifetime’s worth of wisdom out of your experiences and then just put it out there.”

      Thank you! You know, there was this one moment in time, when I thought “Well, Maura will never grow up to be a brain surgeon” and realized…NONE of my kids will ever be a brain surgeon. I just want them all to reach their full potentials, whatever that may be. In a way, I have the same goal for all my kids 🙂

  7. Marianne January 18, 2012 at 6:41 pm #

    I have a child for life as well. Having an intellectually disabled child has its challenges, but it is never burdensome. Brushing my daughters teeth ( among other things) is as natural as doing my own. I have been on the hope roller coaster, and it is not fun! I know my family shares a certain closeness and connection because of Mary, and I don’t think I would want it any other way.

  8. marsha melkonian January 18, 2012 at 6:46 pm #

    Of course, you know that there are great residences that are supported, group homes and individual as needed. Great staff that can assist, and family settings. My sister has cerebral palsy and lives in a great community, Martla Lloyd Community Servcies, Troy Penna, that is like that, different levels of houses and activities and work at different places, inside and outside the workshop.

    Also remember to check out siblingsupport.org for your other kids. Great resources and connections with other sibs. sibkids, a moderated discussion, and sibnet for older sibs. The sibling relationship is the longest running relationship, longer than yours as a parent.

  9. marsha melkonian January 18, 2012 at 6:50 pm #

    spelling errors, sorry! Martha Lloyd Community Services, Troy Pennsylvania http://www.marthalloyd.org/

  10. Nicole January 18, 2012 at 7:07 pm #

    Phoebe, I’m totally glad I found your blog. We know our daughter will be living with us too. It’s not a burden, it’s not something to cry about anymore, it’s just how it is. We love her and, as independent as she likes to be sometimes, she cannot follow a simple direction, doesn’t speak, etc. But she loves school and being around the other kids. I think it’s awesome that you guys up and moved to Ireland – I have to work on my husband 😉 Give your other kids some props from me too – Annie constantly destroys their Lego creations, and annoys their friends with her strange ways…still, they love her. Keep on Phoebe, and drink up the Starbucks! Sweet!

  11. Venessa Amoroso January 18, 2012 at 7:30 pm #

    I love this!! Thank you for being so honest and writing about Maura and being realistically optimistic! I too have a child who is 3 y.old and he will be living with us for the rest of his life. Daniel has Angelman Syndrome and is probably at the level of an 10-15 month old.

    Some days are harder than others and even though he is only 3, I do think about the future. What will this look like as he turns 5,
    10 or 15 y old. We have a daughter who is 7 and I wonder what life will be like for her as they both get older. I wonder who will take care of Daniel when we are no longer around. Yes, sometimes I let all of this conse, but I realize I need to live in the here and now and enjoy my children. Yes, we do therapies 4 times a week and it can be draining, and sometimes I think about taking a break. Then I start to feel guilty, like you have.

    Thank you for sharing how you were feeling! I appreciate it so much. I know I am not alone!!!

    Maura is beautiful and my prayers are with you and your beautiful family!

    Warmly,
    Venessa

  12. Louise Kinross January 18, 2012 at 7:31 pm #

    That was BRILLIANT! I’m afraid I didn’t figure out that I truly couldn’t control the outcome of my son’s life (in terms of changing it, he has an intellectual disability) until recently, and he is 17! I guess I’m a slow learner. I wrote about my regrets in this post: The Enough House: http://bloom-parentingkidswithdisabilities.blogspot.com/2009/05/enough-house_26.html

    I interviewed a fascinating palliative-care doctor recently who became a triple amputee in university due to an accident. And he had amazing insights about perspective which have helped me see how counterproductive my longings for ‘normal’ have been:

    http://bloom-parentingkidswithdisabilities.blogspot.com/2011/12/its-not-what-you-see-but-how-you-see-it.html

    And I did all of the things you mention — like shoving down the fish oil and other supplements, and I hated the fact that my mothering role was superseded by that of constant ‘therapist.’

    I would love to send you a copy of our magazine BLOOM — on parenting kids with disabilities. Cheers, Louise
    lkinross@hollandbloorview.ca

  13. Kellie Wagner-Englund January 18, 2012 at 7:32 pm #

    well Phoebs…she doesn’t have to live with you forever…she can always live with ME!! I love that little girl..she rocks!! Why fix something thats perfect..its to bad more kids in the world dont smile as much her and appreciate the little things in life like they are huge rewards!!!

    • phoebz4 January 19, 2012 at 4:25 am #

      Well you know Kellie, the girl loves the beach. I think the three of us should find a beach house to stay in…oh…forever 😉

      • Megan Luck January 22, 2012 at 4:34 pm #

        Beach houses are wonderful and it is soothing to listen to the waves at the shoreline. Definitely an idea to consider when the other kids grow up and move out. She is a blessing and will positively benefit anybody who meets her.

  14. Wendy Carroll January 18, 2012 at 7:55 pm #

    I love your blogs. I’m the mother of a 22-year-old developmentally disabled son. There comes a time when people need to stop “curing” and begin accepting and I’m glad you discovered that while Maura is still young. Let her set the pace and enjoy her for who she is. All the therapies we went through may or may not have helped – we’ll never really know. But the emotional toll they took on both of us was unfortunate. I must say, as he has now achieved 22 years, I have had to rethink his future living with me forever. But that’s a discussion for another day.

  15. Christine January 18, 2012 at 8:03 pm #

    I read recently that part of hope is knowing that no matter what you do yourself, the situation is basically out of your control, which is pretty damn freeing if you ask me.

  16. Janice January 18, 2012 at 9:28 pm #

    It was funny to read your words, because it’s almost like I could have written them. All of the things we tried/bought/researched. All of the years people said “Maybe she’s a little behind. She’ll catch up.” I just wrote a post about it not too long ago, as a matter of fact.

    Thanks for writing this. It’s always nice to hear other people with experiences like yours.

  17. lexiemom January 18, 2012 at 9:58 pm #

    Beautifully written & expressed.

  18. jilledelmanlcsw January 18, 2012 at 10:47 pm #

    I know how the unknown stretches before you when a special needs child is young. My daughter is now 22 and lives in apartment with a mate a town away receiving services, working in three volunteer jobs and loving life. I trace this journey in my blog posts: http://thecouplestoolkit.com/one-day-at-a-time-parenting-adult-special-needs-collected-posts/

    You and Maura will find your way. And when she is twenty-two years old you will be telling someone the same.

  19. Chris Crane January 18, 2012 at 10:48 pm #

    I have enjoyed your posts before, but this one is my family’s journey, I know my Matt or Our Maddie as we call him will always live with us , He like your daughter is also a wonderfully suited to do so . Non verbal and almost always happy he is wonderful companion thru this life, not that he can’t be frustrating when he throws silverware or other wanted things away, we have learned not to become to attached to things !LOL We have learned and accepted , and pray that the world would learn and accept with us ! Gloria Crane (Chris Crane ) message me if you ever would like to talk !

  20. Life's Unexpected Blessings January 18, 2012 at 10:53 pm #

    Thank you for this, really! I also consider myself to be a realistic optemist and sometimes when I say that my daughter will live with us for the rest of her life I get this horrified look from people even other special need mothers. I have not lost hope nor will I ever, I have accepted that this is our reality and my goal is to provide a happy healthy life for my child.

  21. Eileen Hegarty (@allovus) January 19, 2012 at 4:10 am #

    Great! She’s got a team with her for life. What more could any child wish for? The beam on her face is evidence of pure joy; so it should be. I teach girls a lot ‘poorer’ than your cherished little girl!

  22. Elastamom January 19, 2012 at 8:26 am #

    Perfect post. I understand everything you said and feel.

  23. Danielle January 19, 2012 at 9:01 am #

    My daughter Mia has Potocki Lupski Syndrome (PTLS), she started kindergarten this year and like yours she has the developemental age of about 3.5 years. I hadn’t looked at our elephant yet, but i am slowly getting to know her. Mia is a very happy child, very lovable and i can’t think of a better child to have with me for the rest of my life… Thank you for putting you thoughts out there for those of us who can’t even complete a thought it seems sometimes… Well done.

  24. denverlori January 19, 2012 at 9:55 am #

    Beautiful! Honest! As the parent of three very different children (one 2e, one gifted, and one creatively unique) I have no idea what the future holds. I once read a quote from an anonymous educator that I love.

    “Try to see your child as a seed that came in a packet without a label. Your job is to provide the right environment and nutrients and to pull the weeds. You can’t decide what kind of flower you’ll get or in which season it will bloom.”

    • Helen January 26, 2012 at 6:44 pm #

      Love that quote. It fits all of these young people very well. If we can choose to not try to grow them into peonies when they are not…it would be great! Thanks

  25. mumstimeout January 19, 2012 at 10:26 am #

    This is a great post. I am in the same boat as you……. but never fear, we won’t sink, we have lots of life buoys to hang on to to help us out. 🙂

  26. kellie6307 January 19, 2012 at 10:37 am #

    I too have felt that guilt and you put into words exactly how I’ve felt with Aundie. Love it Phoebe, thank you 🙂

  27. JO January 19, 2012 at 11:10 am #

    At the risk of being one of those “have you tried” people- which I’ll preface by saying my daughter has epilepsy which for 2 years was idiopathic- no cause could be found. We sought an epileptologist instead of a general neurologist and now have located her seizure focal point which sits on language in her L parietal love, and been diagnosed with a variant of Landau Kleffner Syndrome. Her seizures are refractory and despite having tried 10 different medications she still suffers anywhere from 5-10/week. The result from the seizures and meds are a language disorder, ataxia, tremors that affect fine motor etc… I wonder if you have considered seeing an epileptologist instead of a general neurologist? Not that it will be a magic wand but may help you understand more if she falls into one of the epilepsy syndromes.

    • phoebz4 January 19, 2012 at 1:01 pm #

      I don’t think we’ve seen a specific epileptologist, but our current neurologist here is on the board for the Irish Epilepsy Association, so I think it’s one of his specialties. Maura’s seizures are actually well-controlled by medication, thank goodness! But it is good food for thought and something to bring up at our next appointment. Thanks!

      • JO January 19, 2012 at 1:37 pm #

        Thanks for not being offended!
        Actually the reason my daughter was diagnosed with a variant of LKS is because her seizures are refractory. Most cases have well controlled seizures.

  28. Ann January 19, 2012 at 1:50 pm #

    Wow! That really spoke to me. Maybe I should try a therapist myself. I am a mother of a beautiful little girl with special needs, and I want to thank you for writing with such honesty. I am new to your blogs and was introduced with the “Being Retarded” blog that you wrote. I have since posted that on facebook and have sent the link to a lot of my email database. I look at it as trying to change the world one person at a time. I have since enjoyed all of your blogs. I have to say that I am really envious of your move to Ireland. My husband and I swear that we will visit there someday. Anyway, thanks!

    • phoebz4 January 19, 2012 at 3:24 pm #

      really, I think any mom of a special needs child could benefit with the right therapist. Mine actually also worked with children with various issues (sensory, autism, etc.) and their families. So I didn’t have to explain Maura to her – she got it.

  29. Lorraine January 19, 2012 at 4:57 pm #

    My daughter Kim was born on Christms Eve in 1989. As it turns out, she LOVES Christmas. Santa(played by a family member) visits our house on Christmas Eve and this is the highlight for Kim. Santa will always exist in our home!

  30. Lynn January 19, 2012 at 7:07 pm #

    I love reading your blogs about Maura. I have an 11 year old, Claire, who sounds very similar to Maura. No “real” diagnosis. Chromosome translocation of 9 and 17 and MR, with developmental delay. I went through the lows when Claire was about 3-6 when people were telling me what I should do to “fix” her. Once I stopped listening to them and doing what is best for Claire and our family, it was “fixed” 🙂 Claire now goes to a school for children with special needs and is doing great. She is still about 2 1/2 developmentally, and is the sweetest, most beautiful girl. I am very lucky to have her in my life and my son is a better person because of her. Thank you for posting your feelings and experiences so eloquently– it is my life but I just can’t write as well as you!!

  31. Amber January 20, 2012 at 6:39 am #

    Seeing how many moms have felt this way is very encouraging.(it’s not just me!) I remember when I realized that Ty would a “lifer”. 🙂 It takes a little wrapping your mind around…so does realizing the opposite, though, that my other 2 babies are going to leaving one day too soon. I’ve felt the pressure of “try this” therapies, and I must confess, every time I hear about a new miracle cure for autism, I have to resist the urge to poke somebody in eye. I’m very thankful for a dr in Ty’s life who helped get me off that merry-go-round by just speaking plainly about it. Don’t buy the magic beans, basically.

    On a slight rabbit trail…It’s funny-one of the greatest ironies I find is that while I look to the experts(teachers, drs, caseworkers) for answers…they’re usually looking to me. I feel a little bit like, aren’t you the one with the education? I have no special training here!..we have to become the experts rather quickly. i’m thinking we should all get honorary degrees, something to validate us! 🙂

    • phoebz4 January 20, 2012 at 6:45 am #

      I’ve actually requested my honorary degree in Speech Therapy. Considering I spent 7 years in ST myself as a child, then had two kids with articulation disorders, one with a phonological disorder (which is probably what I had), and one with apraxia – I think I’ve earned it 😉

      • Megan Luck January 22, 2012 at 4:51 pm #

        You most certainly have deserved it. I had ST for a few years when I was really young, probably should have continued with it longer but it did help some. I had severe ear infections during my childhood that affected my hearing so that did not help with my speech much or my learning but they did not connect it with my learning disability. I spent most of my childhood school years in Special Education for a learning disability I never really understood but the teachers were wonderful and the class size was very small ( about 7 to 10 children) only so the individualized attention helped. I have known kids through that program with extreme special needs and they were such a blessing to me and helped me fit in. I do not like when other people keep trying to “fix” these people and don’t try to simply accept them as they are and enjoy their company. I see the world differently because I spent time with them and really got to know them.

  32. curliecutie January 20, 2012 at 5:13 pm #

    I’ve just started following you, and after reading some of your posts about Maura, and how you feel, I just want to let you know that you’ve made me establish further that going into the Developmental Services field is the best thing I could have ever done. I can’t wait to work with amazing children and adults like your daughter described here. thank you!

  33. cathy M January 20, 2012 at 9:27 pm #

    When my daughter was a baby, (She’s now 23 yrs old and has Down Syndrome). I was in that worried place of her “living with us forever”. I voiced this out loud to her early intervention specialist and she looked at me and said– “You know, she may not WANT to live with you forever”. IT felt like a slap at the time (how could she talk about my baby that way!) But it was a powerful lesson for me- that I may have plans for her, but she may have her own hopes and dreams. And she does, she isn’t living independently quite yet, but we are continuing to work toward this. She works and volunteers and has a good life, Yes, she will need plenty of supports– but that realistic optimism is a good place to be.

  34. amyyinwonderland January 21, 2012 at 9:11 am #

    Such honesty! I felt like I was reading something from myself. My 6 year old has cerebral palsy and the maturity of an 18 month old and the catch up game is exhausting. I always feel like I’m never doing enough. But I’m learning to just live and be. Whatever happens, happens 🙂

  35. Linda McDermitt January 21, 2012 at 4:56 pm #

    Thanks so much for your posts! My daughter is 15. She has been diagnosed with Pallister-Killian Syndrome, another of a long line of chromosomal mutations that just happen, since the age of 7. I suppose I started down the path of acceptance, when Sarah was turning 4 and about to enter the school system. We were discussing Sarah’s strengths and weaknesses, etc. with education specialists assessing her for services, when I, myself, used the words “mentally retarded”. That was the first time I had let myself say it and know that I was talking about my own daughter. I completely broke down there during the assessment. It has been a gradual letting go of “normal” and therapy. Often times I think we let ourselves be pressured into making others feel better about our children. Something I did come to acknowledge awhile ago, is that I don’t care much anymore if someone else is uncomfortable around my sweet girl–her squeals; her occasional outbursts, which are usually happy in nature; or her tube-feedings. Sarah is my sweet girl; she’ll always be my baby girl!

  36. Megan Luck January 22, 2012 at 4:17 pm #

    This picture of her brother and her is so precious. She is blessed to be born to you and your husband and to have such loving siblings. I really like reading these blogs and I agree with you on accepting her limitations while also challenging her at the same time. Your “normal” will always be different from other people’s sense of normal but that is perfectly ok because you have worked out a system for your family and that is what is important.

  37. Megan Luck January 22, 2012 at 5:15 pm #

    Phoebe,
    I was reading a book about a woman who has two step children and one of her own and one of the step children has Down Syndrome. She likens the experience to planning for a move to another country with a foreign language. You learn the new language( say Italian) and you study hard, learn the language,customs, culture and the layout of the area and then the plane drops you off in Holland! Now you are in in shock! Everything you learned is useless in this land! You now have to calm down, accept where you are and learn to adjust to a whole new way of life that will become “your Normal Life”. You have adjusted quite well and you should be proud of your strength as a person and as a family. Maura is blessed to be surrounded by all of you.

  38. Nicole guerra January 22, 2012 at 6:17 pm #

    I love this post, it’s so positive and inspiring!

  39. Tania January 24, 2012 at 1:38 pm #

    We are still in the hope stage with our daughter who has autism, and don’t address the possible elephant yet. We just don’t know the outcome at this stage. It is good to read a post like this just to hear an optimistic take on what could eventually be.

  40. Heather January 24, 2012 at 4:25 pm #

    My spectacularly cool 11 year old son will be with my husband and I always, his equally spectacular 9 year old brother will also need some form of assistance long term. The moment I really allowed myself to accept these facts was difficult, but liberating. I could accept, be at peace and move on. My sons are beautiful just the way they are, no fixing required and I love them dearly. Beautiful post, thank you.

  41. atpeacewithcrazy January 25, 2012 at 5:47 pm #

    ah yes, the elephant in the room. we are new to this. our daughter was diagnosed with a chromosome disorder (several duplications). people still pretend like the elephant isn’t there. it makes me feel incredibly uncomfortable & i basically want to reach across the room and shake them!!! i feel like if they just said something then we could get rid of the elephant!!

    • phoebz4 January 25, 2012 at 5:54 pm #

      I’ve found that most people are afraid to ask questions, so I tend to put it all out there right away. Sometimes, it’s a simple “Yeah, she’s got issues.” with a laugh. When people see I’m at ease with it all, they tend to relax a bit. I mean, if I’m okay with it, no one else really has the right to get upset with it all (except my husband and three other children, since we’re all directly affected.)

      They say attitude is everything. It really is sometimes 😉

  42. Helen January 26, 2012 at 6:33 pm #

    As a grandmother of a wonderfully special young lady, I am very aware of what my daughter might face, and that as a family we will do it together. You show other women to be real and to know their “elephant” is not the only one, It is frustrating, especially when their is no “diagnosis” (which is after all only a label). My granddaughter is sweet, and dramatic. She makes life interesting. I watch my daughter find ways to reach her and give her incentives. It is obvious she loves her very much and so do we. Thanks for your blog, keep it up.

  43. rosanneromero May 18, 2012 at 6:10 am #

    I was diagnosed to have MS back in 1986. And to make me feel better, people marinated me in the shiny, happy, feel good hope. If i so much as said “My MS IS GIVING ME A BAD TIME TODAY” they rushed to hush me. Said things like “don’t call it MY MS, else it’ll feel welcome” and other inane stuff like that. Not just that, they concocted alternative cures for me. I’m Filipina and we have a lot of magic potions here….such as catch a house lizard, roast it, pulverize it and drink it as a tonic.

    26 years later I still have MS and while I’m not bedridden, I live in an impaired kind of way…compared to most other people. But I’m fine. Love to eat. Love to laugh. Love to talk. In the pie of my life, MS is just one slice…all the other slices are good.

    I love that I stumbled on this blog today.
    I will keep you and your family and Maura in my prayers…but not in a happy, shiny, feel good kind of praying. Just the simple and honest kind of praying that’s tided me over 26 years.

    My blog is Amusing Grace Online

    • phoebz4 May 18, 2012 at 7:12 am #

      thank you for the prayers! They will be much appreciated! We’ll also send some back your way 🙂 I’m going to go check out your blog now…

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