Thursday, September 6, 2012

On the Sidelines...

I've been hiding something from all of you.  Not hiding it very well, but trying.  I have been really struggling.

This afternoon, saying goodbye to Miss Sara, I told her this:

"Whatever I write tonight in my journal - it is not about you.  It's not about a therapist or a teacher.  It is not personal in any way.  It is 100% about me."

I kind of feel like I'm going to lose it.  Between the decision to stop trying for a baby...clearing out all of our baby equipment, toys and clothes...and sending Gavin to's all making me feel entirely powerless and out of control.

From the second Gavin was whisked from the delivery room and into the hands of nurses and doctors in the NICU, I have had to share him.  The nurses told me when I could hold him and feed him and even visit him.  Then, once home and continuous until a couple weeks ago, I had therapists in and out on a near daily basis.  For almost four years straight.  So, in a way, I'm used to sharing my child.  And I'm used to multiple opinions and suggestions.

But for some reason - at this moment - I'm about to explode.  Because now - the sharing is different.  In the old sharing model, I was there.  And now - I'm not.

I think some of it is jealousy.  I sit at home and watch the clock until the moment that Brian and I can leave to pick up Gavin and Miss Sara from school.  Then Sara gets in the car and tells me every detail she can recall about their day.  All the wonderful things Gavin did.  I sit there and have to remind myself of two things:  to breathe and to remember that this is all wonderful and happy and incredible.  But the reality is - I sit there with anxiety and jealousy.  I am green with envy.

I think some of it is powerlessness.  Sara is in charge of Gavin.  (Which I'm THRILLED ABOUT!)  She is with him during his therapy, when that used to be me.  She conveys all the information about Gavin to the therapists, when that used to be me.  (p.s. - she knows Gavin very well and is great at this) I am home wondering and waiting and looking for any child in my house to take a photo of - but there's no one.  Just me and my overwhelming thoughts.  I have been accused of thinking too much.

I think some of it is frustration.  I need to meet with his therapists - do you know I don't even know what his Occupational Therapist looks like?  I hear that this is somewhat normal.  That some parents never meet their kids school therapists until the IEP.  That some parents are happy to just read the notes sent home spelling out (in a short synopsis) what they did.  I'm just not one of those parents - at least not now.  I feel like I should be more involved...but then it seems like it's not the appropriate thing...but I feel like I should know more...but then I... see?  I think WAY too much. I just want to do the right things by Gavin.  And Brian.  I just want to be the best Mom I can be.  But suddenly, I feel like I don't know my place.  I've lost my Mommy footing.

And then I have the normal frustrations about a thousand opinions.  As a Mom who does her research and is on top of things medically - it still gets very confusing to have a bunch of different opinions.  A therapist will express a concern that will have you running to a specialist...only for the specialist to tell you that it's not a concern...only to have the therapist bring it up again about their concern...and round and round we go.  When there are multiple opinions it can shake the confidence of the main decision maker.  Me.

And the cherry on top is clearing out all the baby things.  The timing just sucks.  Sure - I could have waited and done it months from now, but why?  It would have prolonged the agony.  I have been giving all of our special things to very special people - which makes me very happy.  The thought of certain things going to strangers was too much to bear.  In a way, I really feel like I'm grieving.  I have always grieved for all of the babies I've lost (too many).  But I'm grieving for the one that I tried so hard to meet as well.  It's still so hard to say "we're done."

I suppose, in a way, all of this is a glimpse into what it will feel like to have an "empty nest."  I don't like it.

Before you get preachy and try to "fix my feelings" - I know that school is great for Gavin.  And I know everyone has his best interests at heart.  And Sara, well we all know she was dropped from Heaven just for us.  And she's an amazing advocate for Gavin in and out of school.  And I know that Brian and Gavin will grow up just fine without another sibling to bond with.  And I know that the chances of me even getting pregnant at this point are about the same as - oh, I don't know.  I was never good at analogies. But I know all of this intellectually.  I do.

But hear me out.  For the last six years (yes, six) my identity has been wrapped up in either trying to have a baby, trying to save a baby, trying to raise a baby while having a baby, trying to learn all the ins and outs of the special needs world while raising two babies, trying everything out there to help my baby's brain heal while trying to be there for my other baby - which included (still following this?) trying desperately to have a sibling for both of them...and now...


No more ovulation kits.  No more pregnancy tests.  No more bouncy seats or baby rattles or night time nursing.  No more therapists in the house or watching Gavin master something in therapy.  No more weekday photos of events we thought we'd never see.

I just feel left out.

Like someone ripped the power out of my hands.

There HAS to be other Moms or Dads out there that have felt like I do.  I was told today that it's unlikely - that I'm overly sensitive.  I just don't believe that.  There's a different kind of "letting go" when it comes to a special needs child vs. a typically developing child.  I was nervous and anxious to watch Brian walk away from me.  But he can walk and talk (and talk and talk) for himself.  With Gavin..."letting go" was more like "handing him over."  This is going to take some getting used to.  And letting go of my dream of that third child has not for one bit been easy.

If you have felt this way, please tell me.  This has had me in tears every day while they're in school...and every night when I'm going to bed.  I know like everything else - it's a phase.  I'll get my groove back.



  1. I don't know what to say. I don't have any words of wisdom. I think that things changed and you're still trying to figure things out. There is a lot of anxiety in sending your child off to school for the first time. I can't imagine when it's a child who cannot communicate to tell you or the people in his new environment what he wants or needs or is feeling. You're a great mom Kate. You remind me of my mom. You're going to figure it out. You've come through a lot and you figured all of that out too. Not sure how it works with pre-school or with schools for children with different needs, but could you volunteer in the classrooms once a week or so? Or do you think that might make things more confusing? If nothing else...I can teach you digital scrapbooking to fill your time ;) I seem to recall something about you taking lots of pictures ;)

  2. my 2 kids are in various stages of launch into adulthood. They don't NEED me as much-finances aside- and that stings. But it's awesome--I worked so hard to be useless to them- they are level headed thinkers- can hold down jobs and all that adult stuff. I am so proud of them! and I am lost sometimes. Imagine the part that hurts is a storm- and visualize it passing or something that helps your mind focus on the temporary-ness of the storm- on the other side is BEAUTY. I visualize waves too- and the beach smooth and pristine afterwards-
    The rest- the loss- so many things at once-I don't think I've ever been called to handle that much loss at once-so I have no words for that- but maybe for everything counted as loss there is at least one thing of beauty you can hold on to - the awesome nurse, that mom you met, something that helped in the moment.
    That and they will ALWAYS want you- even when they are teens and say otherwise.

    1. That was so beautiful...whoever you are! Thank you for your thoughtful comments.

  3. You are not alone. I was 'THAT' mom when Tyra started school year after year with each change with each time I was not there by her side. I too fought to parent - in a different way, but still a rough and tumble worth every bump and bruise fight. So when it came time to not be by her side to not help be her voice I was terrified. I worried that I was failing her. Afterall I had promised that I would always keep her safe.
    You have been Gavin's voice - you will continue to be his voice but it is oh so frightening to wonder if you'll be heard. It is through the intimate knowledge you have of his 'isms that you have been able to foster so much growth.

    Is Sara wonderful? No doubt
    Did you choose this school with great care? definitely
    Are the teachers and therapists skilled? sounds that way

    But none of them are you. I would think it odd to not feel this loss.

    With time there was JOY in allowing Tyra to find her 'voice' and there was no better feeling than having others hear and acknowledge her 'voice'. Don't get me wrong there were still rough times. Times I did not feel either of us were heard. Times that I just wanted to keep her home where I could marvel at her perfection and she would not have to prove what an amazing kid she was without me there to be her voice. We are moms, nurses, advocates, and I used to also call myself her "agent". It was my responsibility to present her in the very best light for people to see past the delays and recognize the wonder of her presence.

    Give yourself time. Be kind to you. Anyone who questions your reaction well... In the wise words of Dr. Suess "Those who mind don't matter and those who matter don't mind".

  4. Love the Dr. Seuss quote. These are big transitions you are all going through, and your identity is changing...loss & transition...when I sent my boy to kindergarten, a mom of grown children I know referred to it as another weaning (we had met in La Leche League) another step away from us and another change to our relationship. I'm sorry it's so hard, I have been feeling the same way now that mine has started 2nd grade in a new school that I hope will be a good fit, and am seeing that I need to find who *I* am in addition to Mom. Wishing you peace through this transition.

  5. I think you are going through what every parent has gone through at some point in their life,as far as sending Gavin to school. My oldest is a senior this year, has been accepted to her first choice for college and the year is already flying by. Although I am so excited for her to start this new chapter in her life, I also want to put the breaks on and keep her home much longer. Her and I have become incredibly close the last couple of years, after some pretty big road bumps, and I'm not at all ready for that relationship to change again. She is going to be 4+ hours from home so I won't be able to just drop in and check on her. I tell myself to just take it one day at a time...some days it seems like it is one minute at a time.

    Add all the other big changes and decisions you have made over the last several months and no wonder you feel the way you do! Try to take it one moment at a time on those days that are especially rough. You have always worked so hard to make sure your boys have had everything they need and you have been with them each step of the way. This is supposed to be a big is for everyone.

    Hang in there Kate, take a deep breath and love on those little boys every second that you can.

  6. God has given you a calling - to raise your children. We can all clearly see it with every word you type. I have the same calling - and that is why we homeschool. Secretly, I was always hoping you would too. It is the most rewarding life being a homeschool Mom.

  7. I've been accused of being a helicopter mom to which I reply, "no way! I'm a hovercraft mom.. those helicopters stay too far away" Seriously, I know there are tons of other parents who feel the same way you do. Myself included; I panic at the thought of sending my nonverbal, not quite steady walking, shy girl to a school. I agree it would also be odd if you weren't having all these feelings. It would not be you.
    Whenever I have a similar feeling of being overwhelmed, or feeling like a rat in a wheel that cant get off, or feeling like "too much butter spread over too little bread" (name that book), I just take a deep breath and remember to "be still and know that I am God". It helps to center me. Exercise helps to shut my mind off too. Left to my own devices I can make one heck of a mess.
    I said all of that to say this: your feeling are completely valid. You are not even a tiny bit alone in those. Love yourself for the wonderful you that you are. And love those children that made you who you are.

  8. Your feelings are shared by MANY Moms, everywhere. I can remember each of my children's first days of school, and how the transition took me a while, each and every time. Now, I am facing a new transition, my oldest is a Junior, and my baby in her last year of elementary, with 2 more in between. Next year when we get ready for that first day of school, it will be my first babys last day of high school, Im already crying, and its a year away! Ans my babies first day of middle school, with 2 more in between.
    I think every mom goes through phases and periods of time where we question, our new roles, BUT what i have learned is I am still MAMA! No matter how much they grow up, and claim they don't need us, they do! And just when i think, WOW, Is he really going to need me ever again, They DO! You will always be Mama, and will always be there for them. And you feeling this way is becasue you are a GREAT MOM!
    Be kind to you, be patient with yourself, and give yourself time to adjust. (((HUGS)))

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  10. Hi, Kate! I rarely comment (mostly because your posts fill me with such depth of emotion I can't find adequate words), but I read faithfully and carry you and your family prayerfully through my days... and MY heart transforms because I know YOU.

    Today, I just want to say that you need to be SO PROUD of yourself for living the hard reality of age appropriate transitions for Gavin. Hard as it is for you, you really do always do what is 'right' and 'good' and 'nurturing' for his sake.

    I just watched a mom go through this same process with her daughter, and it is beyond excrutiating and almost cruel.... because Mom is 86, and daughter is 50 with Down Syndrome.

    I know you'll feel the full weight of that sentence... and you will know that you are a special sort of hero.

    May today and every day brings to you a ridiculous abundance of whatever you need (and especially peace for your grieving heart and freedom jealousy). May all your concerns, struggles, anxieties and fears fall like ashes as you (and Gavin) rise on eagle's wings, SOARING above all that would hinder you along this tremendous adventure of being and becoming all you are created to be. May the grace of God simply "overtake" you moment by moment and may you always be overwhelmed by it, rather than by the cares of life!


  11. We aren't there yet, however my boys turn three in May so the discussions about school have begun for N (and Z as he is speech delayed). The thought of once again someone else seeing firsts and me missing them, after two months of that in the NICU...........brings me to tears. I know going to school will be good for both my boys, but I am so not ready. Someone else possibly seeing N take his first independent steps? Someone else changing his diaper? All of those things make me want to never let him leave!

    It must be so hard for you, and I don't think anyone who hasn't experienced the NICU and a child with special needs can ever truly appreciate that.

    Hopefully it will get easier for you, and watching Gavin blossom will make it all the better!

  12. the transition to school is so hard, i very much felt so powerless. I, like you, had very close relationships with our therapists that had been with Ryan since he was 3 months old, 9-10 times a week in my house, and then ....... little one line notes from strangers, people that didnt even know Ryan, that sent home notes about him doing xyz and I would think "hes been doing that for months, didnt you notice him doing abc too". It was so frustrating, and a non verbal kid cant tell you about his day so you feel a part of everything. I was frustrated that i didnt even know the names of his class mates etc. I gets easier friend, it changes, just like EI was a huge adjustment, so is school, but it gets better. you build relationships with these folks too, Ive found they actually appreciate the parent who wants to be involved in their kids therapy / day.
    I cant believe sometimes how similar our boys are in many ways.

  13. Kate - You are so completely normal! I don't even have a special needs child and yet I know EXACTLY what you mean. Sending Emily on that Kindergarten bus and not knowing exactly where she was going, who she was going to see that day, what they were going to do, where she was going to sit....was unbearable! I have been dropping her off at daycare for the past 5 years and I was able to see first-hand her cubby, her desk and chairs, her friends, her teachers, her art projects hanging on the wall. Every day I talked to the teachers (in person!) about how she was doing. I chatted with her friends and met their parents. It is so completely weird to send her to a school on a bus everyday. I don't ever drop by the school. I don't get any "dailies" from her Kindergarten teacher telling me how her day went. I have no idea what her friends look like. I haven't met any of their parents. And although I know she is just fine and this is all very normal, I can't stand it!!! I want to be more involved. It feels so strange not to be. And I hate it. I am trying to deal with these feelings everyday. I joined the Home and School Association in hopes of staying more connected. I emailed her teacher and volunteered to come into the classroom and help. And i have heard NOTHING yet. I am checking my email everyday waiting for the moment when I will be called in to come in and volunteer. It is almost sociopathic! I even joined the gardening committee for school when I have absolutely no idea how to garden. So, yes Kate. You are normal. (either that or I am crazy too!)


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