My monthly Hopeful Parents post is up

My Monthly post is up at Hopeful Parents.

CLICK HERE to read my post titled:  Wheelchairs and steps are not a match made in heaven

Hopeful Parents

My monthly post is up at Hopeful Parents.  Click HERE to check it out.  The topic is:  Balance and summer vacation.

Hopeful Parents

My monthly post for Hopeful Parents is up.  This month it's about something near and dear to my heart.  Click on this link to go read what I wrote in Life Changing Devices.

The joys and heartaches of play

Last month my post at Hopeful parents was titled The joys and heartaches of play.  I posted a link to it on my blog but thought I'd like to post the text here so I could have it should I actually get around to printing out this online blog one day!

The joys and heartaches of play

Sometimes I let my mind get the better of me.  Instead of experiencing things for what they are I imagine what they could have been.  I do this sometimes.....and yesterday was one of those times.

We were at a birthday party for some good friends.  Everyone knows us.  Everyone knows Emma.  These are really easy places to socialize because I don't get the pity look - the oh, poor thing in a wheelchair look.  None of us want pity because our life is not something to be pitied.   I also don't get the somewhat ridiculous question of "Will she ever walk?"  Truth be told, I'm not too concerned with Emma walking and would rather she start talking - now that would change her life!

The birthday party was the kind where there were bouncy castles and houses all over.  All of them in primary colors and you can't help but smile when you walk in.  It fills the children with energy and there is lots of laughter and squeals all around.  It's a happy place and we love happy places!

We've been to these kinds of places before and Emma loves the bouncy fun.  But this time the bounce houses weren't adult friendly.  The size and navigation of them were made strictly for children so I couldn't take Emma through them without likely hurting myself.  There was one large structure that was made for littler children, but since Emma isn't crawling she couldn't really navigate through and it wasn't so exciting to her.   We were able to make one of the large bounce houses work - I put Emma in through the opening and laid her on her back like we usually do and when the children bounced around she was bounced.  She smiled the whole time and really giggled when the children bounced over her while being careful not to fall on her.  For all the other structures, though, she had to look at all the fun from the side.

I think Emma really wanted to go on the large bounce slide.  She squealed with delight each time we went over to watch her sister slide down and I felt bad that I couldn't take her on it.  Actually, I'm not sure I could have navigated the slide on my own let alone while carrying a 5 year old!  I also felt bad that she was looking on lots of the fun from the outside and I started to wonder what it would be like if she could walk.  What it would be like watching her climb up the slide wall and squealing with delight as she slid down.

Then I wondered if it would have been better if I didn't bring her to the party and I realized it was my hurting heart that brought me to that question.  Me not wanting to feel how different my little girl is when in a roomful of children and cheery bouncy houses.

But I know that wouldn't be fair to Emma.  When looking at her in that room she was all smiles.  Enjoying watching the children run around, bounce, squeal, hula hoop, climb the rock wall.  She enjoyed every minute of it even if she couldn't physically participate in the fun.  She was able to participate by just being there.  By being happy in the moment.  By experiencing joy.

I say it again and again - I learn a lot from my children.  So I finally decided to take my cue from Emma and just enjoy the moment and not get caught up in the what ifs.  To live life to the fullest and full of joy no matter the obstacles.  Thank you, Emma, for the reminder!

Thankful and Hopeful Parents

I missed a day on the Thankful posts so I'm doing a couple here:

• I met a group of ladies at the hospital when our oldest children were only weeks old and we have been friends ever since.  I'm thankful for these and all my friends.
• Backyard bonfires
• The excitement our children have when offered a glass of hot chocolate
• Our sewer backed up over the weekend.  We had water coming out of the pipe and quite a bit on the floor.  This happened on a Saturday and it was fixed by Sunday morning.  I'm thankful for the skilled tradesmen in this area that had us up and running so quickly.

My Hopeful Parents post is up now so head on over here to read it.  

Hopeful Parents

My monthly post is up at Hopeful Parents.  I was a day late and sometimes that just happens ;-)

You can read it by clicking on the link above or you can read the post below.

Reclaiming FUN

I'm a day late on this post and I really am sorry about that.  I'd love to say that being late is not typical for me, but I can't.  Being a day late is not typical but late in general is how we typically roll.  This is not by design but a side-effect of our current life situation.

Amazingly enough, we made it to an appointment early one day this week and my oldest daughter said to me - "Something must be wrong.  This never happens. We're never early."  Thankfully nothing was wrong and I had a moment to talk to my daughter about a time in my life when I was usually on time or slightly early for most things.  I recall her laughing a lot during that conversation ;-)

I am currently in all-out planning mode for our summer and it is not a moment too soon...my propensity for lateness even carried over to my planning.  My oldest daughter is already out of school for the summer and my youngest wraps up this week with a summer session of 5 weeks schedule for later in the summer.  In addition to the school schedule we have therapy schedules that effect our summer plans.  Our family brainstormed a list of fun things to do this summer.  It's filled with wonderful ideas and the bonus is most of the things are cheap or free which means we might be able to complete many of them before school starts.

But planning the fun has been more difficult than I imagined because my little one has afternoon therapy sessions most days of the week.  Summer hasn't even started yet and I'm already annoyed with the frequency of her therapy sessions!  I have managed to adjust the schedule so there will only be 3 days/week with afternoon sessions instead of the standard 4 but even that seems extreme to me for summer.  And this made me quite grumpy.

Then I dug deep and reminded myself that we are in control of our schedule.  I always knew this but when your child is so far behind in meeting developmental milestones and is {actually} starting to make some wonderful progress I find it hard to remember to slow down or stop for a bit and I needed to reminded myself.

So I am planning our summer schedule with a high priority on doing most of the fun activities on our list and then I'll see what therapies work with our plans and we'll cancel or reschedule the rest.  We are making the choice to prioritize fun over therapy and tracking unmet milestones.  This decision made me very happy and I feel like our family will be more balanced this summer.  And I know Emma and all of us will thrive.  And that is something that makes me very Hopeful!


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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at howlifehappens.blogspot.com

Hopeful Parents

My monthly post is up at Hopeful Parents.  I meant to link to it on the 12th (when I wrote it) but time got away from me.  I'm particularly happy with the subject I chose and wanted to make sure I captured it here so it will be included in the hardcopy I plan to make from this blog....someday!

Living with Ambiguity
Navigating life with a special needs child requires learning to live with ambiguity.  I'm a trained scientist who likes to put some order into our ambiguous lives so early on this journey I started reading research outcomes from clinical trials.  Specifically, I was looking for outcomes vs. various therapies.  I found that scientific trials are often not available on many therapeutic options and, if they are available, often none of the children in the study are similar to my child - a child with multiple handicaps.

Disillusioned with the available information I found it more productive to reach out to other families with children similar to Emma.  Sharing our experiences helped me narrow down which therapies we wanted to pursue further.  Some we liked, some we didn't.  All of us were trying numerous things at the same time so we couldn't uncouple the results, but we often had pretty strong feelings on what was working better than others.

Through our research we found one practitioner we thought would be a good addition to Emma's routine.  So we went for an extended evaluation and asked lots of questions.  The practitioner lived far away, was expensive and not covered by insurance but still we thought we might want to try it out for a few months.

Emma started to make amazing progress!  Her head control made a great leap forward.  And it wasn't only us that noticed the change.  Loved ones, teachers, therapists, and random acquaintances mentioned it to me all the time.  It is still not perfect but it is much improved over what it was only two months ago.  Her sitting has also taken off.  While she isn't sitting independently she needs much less support in sitting.  Taken together it represents remarkable improvement in her gross motor skills that came on suddenly.

The interesting thing is that life happened and we weren't able to fit that practitioner into our schedule.  Emma made these gains without adding anything new to her routine.  Maybe it was all her hard work over the last few years that came together to give her better control.  Maybe it is related to her getting a bit older.  Maybe it is related to her new wheelchair.  The truth is I'm not sure why she made these gains and I'm beyond thrilled about the remarkable improvements she has made.

Had we added that practitioner to our routine I would have attributed the changes to that person and therapy.  I'm actually quite glad that life happened and we weren't able to match our schedules for a block of therapy because if that didn't happen I would never have known that Emma would make these changes without the extra intervention.

Living with ambiguity is one constant on this journey through life.  While I'm still not great at it, I'm getting better at it everyday.

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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at howlifehappens.blogspot.com

Hopeful Parents

My monthly post is up over at Hopeful Parents.  Click here to view it.

Hopeful Parents

My monthly post is up at Hopeful Parents.  Click here to view it.

Hopeful Parents

My post is up at Hopeful Parents today.  Click here to see it on the site, or you can read it below.  I had fun writing this post and hope you enjoy reading it!

I'm a Borrower

There are many days when I have it together - strong, empowered, feeling full of sunshine and happiness.  You know the days - what we would consider the "highs" in reference to the highs and lows of life.  I bet I'm not alone in saying that I love those days!  I love to celebrate them and find little moments to do a happy dance because I know they do not last forever.

I am truly grateful that I spend most of my time on the positive side of the highs and lows, but it is inevitable that there will be some low periods.  And that is when I go into my borrow mode where I seek out people who are in the high and use their optimism and experiences to get through the lows as quickly as possible.

Wondering why our house is staying on the market for what seems like forever?  Why my non-verbal child isn't as excited to use an augmentative communication system as I am for her to use it?  Why my child will happily walk in her gait trainer all around our house but not even so much as move a foot forward when I bring it to school or private therapy for her (this takes a bit of effort on my part!) to use?  Why there is always a unexpected expense just when you found a little bit of money to get ahead?  Dreaming of how easy it would be if we didn't have to jump through ever higher hoops to get services, equipment, etc. covered because we won the lottery and could pay out of pocket?  Questioning what the future looks like for our children with all the budgetary cuts getting tossed around by our legislators?  

Thinking about all this is enough to put me in a grumpy mood so it's good that - this Hopeful Parents post aside! - I don't usually dwell on these at the same time.  But when I do start moving to a grumpy, less positive outlook on life I seek out and borrow faith, hope, joy, and resilience from others.  I talk to people who are positive, read blogs about children achieving, revisit Hopeful Parents posts that left me warm and fuzzy.  

Doing these things usually works to help me fake it until I feel it.  And then something magical happens.  I start to swing back to a positive frame of mind and don't have to fake it anymore.  Yes, I am a borrower.  And my outlook on life is all the better for it.  

Kristina contributes to several blogs and hopes that she can sometimes be a lender to those who need some help to fake it until they feel it.

Hopeful Parents

I'm happy to report that my monthly post is now up at Hopeful Parents.  It's titled Finding Time.  Click HERE to read it.  

Hopeful Parents

My post this month went up at Hopeful Parents yesterday.  I particularly like the message I wrote in this one, so I'm going to repost it on my blog for you to read.  Here is what I wrote:

We are a family that is often on out and about in our community.   We like to participate in local events, visit museums and zoos, grab a bite to eat at restaurants and generally have a good time.  I have always been the out and about type, but I find that our adventures outside our house now include more conversations with random strangers then ever before.

Emma is three years old and attracts quite a bit of attention to herself.  She is all smiles and flirty with people we meet in public.  She has the most amazing eyes and people are just drawn to her and come over and start to strike up a conversation.  Emma is quite hospitable to them for a couple of minutes before she looks around to find another person to lure into her web while she leaves me holding up a conversation with the stranger.  This could be because Emma doesn't talk so her conversations with the strangers are very short, but I think the reason I am left to hold up the conversation is more because people seem to want to know - why is Emma in a wheelchair and not talking, what is it like to be her parent, etc.  And so as often as not they continue to stand around wanting to talk with me long after their "chat" with Emma has ceased.

I have gotten good at managing these conversations, and have a variety of responses ready based on our available time and how much I like the person.  One group that seems to be fond of Emma and wanting to talk to me is the little old lady.  I'm sure you've met her.  She is the one who generally says something to the effect of "God only gives children like this to parents who can handle it."  Oh, boy!  Although I have a few responses at the ready, I often quote Mother Theresa in response - "I know God will not give me anything I cannot handle.  I just wish he didn't trust me so much."  

But, the other day I came out with an entirely different response.  

We were out eating lunch and the owner came over to talk with the girls and give them a little present.  She was a lovely woman who had a nice way about her - she treated Emma great by speaking directly to her and wasn't a bit patronizing at all but she was very curious.  And, in the course of the conversation she had to say it - "You know, God only gives children like this to parents who can handle it."  And immediately a great feeling of love came over me and I heard myself saying that she is right.  My husband and I must have done something right to be so blessed with both our girls.  That only we are able to know how truly wonderful it is to have Emma and Julia with us day in and day out.  And then she looked at me like I must be crazy!  Because she can't even begin to understand my life.  

Other people capture glimpses of our life.  Feeding Emma while my plate grows cold.  Carrying her around and helping her play with other kids.  Lifting her wheelchair in and out of the van, going down the slides at the playground with her, acting as Emma's arms and legs in her daily life.  Checking to make sure her cochlear implants are working correctly.  What they really see is all the work involved with raising Emma and they see me doing all this while managing to ensure our typically developing almost 5 year old is getting all the love and attention that she needs.  

And while raising Emma does require more work than raising typically developing children who can talk, hear, and move on their own, I find that it is often filled with great joy to counter-balance the work.  

What people don't see when they glimpse a brief moment of our day is the true picture of life with Emma.  They don't see how our family is just like any other family in our own house when the door closes.  They don't see how Emma acts like a typical 3 year old - using her crawler to get around and into her toys, watching the cartoons on the couch with her sister, playing hide and seek and giggling all the time giving away where she is hiding, building forts and laughing heartily while she is in them, looking at everything her sister is doing and trying her best to imitate her, moving her feet in her gait trainer trying to walk to her destination, using her iPad to sometimes give silly responses to our questions while she gives us a mischievous grin and laughs before she decides to give us the right response.  You see, the truth is that at home, behind closed doors, is when real magic unfolds.  

So now I think I have my response to the one liner that I hear all too often.  I will say, that I am truly lucky that God thinks I can handle this much happiness.  If only everyone was as lucky.  

Embracing Differences

My monthly post is up on Hopeful Parents.  Click here to read it.

Some inspiration

Today I put a video up at the Kidz blog.  It's very inspirational and worth a look if you have a moment.  

"When I let go of who I wanted her to be, and just let her "be," she completely flourished, and I reveled in knowing she's perfect just the way she is!"

The message in this video is so inspiring to me.  I love to come back and look at it when I need a gentle reminder in the incredible possibilities that are achievable when we embrace our differences.  


If you liked that video, you should also take a moment to read this post on Hopeful Parents.  Because, after all, we could all use a reminder of how incredibly perfect our children are every now and then.

Hopeful Parents

I mentioned in a previous post that I am honored to join the writing team at Hopeful Parents.  Well, today I published my first post (click here to read it) and will continue to post on the 12th of each month.  

This is an amazing site that is a grassroots community where parents who understand what it's like having a child with special needs can connect.  Here is a bit of an introducion on Hopeful Parents from the founder, Christina Shaver:

Consider it a pit-stop in the marathon -- where we can go for attention to our wounds, where we can re-energize our way back on track, where we can look right and look left to see others running too, where we can hear the roar of the crowds cheering us on.

Hopeful Parents is a place of common ground.

We'll introduce you to our diverse pool of talented, thoughtful writers who will share their stories, their feelings, their ups and their downs.

You'll meet parents raising children with physical, psychological, emotional, neurological, sensory, behavioral, social, genetic, and developmental disabilities. Some parents are single, some are married. Some grieve the loss of their child; some grieve the loss of their spouse.

You'll also meet healers -- the "medics" who help us through our run. People we can turn to in our pain; people who can help provide some relief.

These writers -- the parents, the healers -- remind us that we're all on this journey together. We don't have to go it alone.

And with that spirit of togetherness, I invite you to get involved with Hopeful Parents. An easy way to start is by commenting on the posts that move you. Then explore the sidebar. There are quite a few links with ways to participate. Please check them out.

I invite you to visit Hopeful Parents and look around a bit.  I think you will be uplifted.