Special Needs Spotlight

Miggy:  Can you take me back to the day you knew your son/daughter would be born with special needs?  Do you remember how you felt?  Can you compare those initial thoughts and feelings with how you feel now?  

Katie:  Yes.  Yes I can.  The details of that day are forever ingrained my head.  I was 30 weeks pregnant with our son, Will, when we learned of his differences via ultrasound.  I remember everything about that day – phone calls made, clothes worn, emails sent, what we watched on tv to drown out our emotions, crying in the middle of the night with my husband, everything – so many unknowns.  I went from being a blissful, naïve pregnant, immature twenty something womanl to a pregnant, terrified feeling much older woman.  And I also remember how God met us in those moments – how He began to give us peace that truly defies understanding.  I remember how suddenly people and places were brought into our lives to give us hope.  And his birth – it was truly a celebration!  We had had time to grieve the change in plans and to prepare ourselves as best we could and so I recall his birth as being profound and full of joy.  I remember laughter in the delivery room (after he was out) and just pure joy at this precious little marvel of a babe in my arms.    And of course over the course of the last four years, we’ve had moments of fear again and moments of uncertainty but, for the most part, we’ve settled into a routine now and a new normal.

Of course, with the pregnancy of our daughter and the news at 18 weeks that she would have a different diagnosis, we were thrown into a new normal.   (Again – the details of that day are so vivid in my mind.)  There was so much up in the air with her pregnancy and I really felt as though I was on some sort of roller coaster – she gave us numerous scares and several crushing appointments when we weren’t sure she would survive.  Agony.  I felt agony – the kind that starts in your heart and makes its way to your stomach as you grieve.  The kind where you don’t know how you will ever get off the bathroom floor.  Thankfully, her birth, though much more uncertain than Will’s, was somehow a celebration through the tears as well.  I knew that whatever happened with her that day, we wanted to celebrate every moment we got with her.  She has survived and is doing great although she faces some significant challenges.

And though there was celebration at each birth, I will add that in the beginning, I did have some hard days.  I called them “pit days” & a rude comment from a stranger or someone staring or just the overwhelm of managing therapies and specialists could really make for difficult days.  I think that now, I am managing that much better.  A rude comment doesn’t bring down my entire day (usually.)  I can’t remember the last time I had a pit day.  I should say too that those hard days weren’t because my child(ren) are different but rather because of the way they were treated by others or because of the difficult challenges /situations they face.  I adore my kids just as they are.   I don’t feel as overwhelmed by the extra things I deal with – I just kind of manage it.  So I would say that is something that has changed a lot from the first 6 months of Will’s life.

Now I would say that I feel like we have a new normal & we have a routine & it might not look like anyone else’s but it works for our family.  This is who our family is and I love it.  The unknowns don’t feel so overwhelming any more.  There are still many out there but they aren’t as overpowering and terrifying anymore. In some ways, I think that now that I can hold my babies in my arms, can laugh with them and admire them and see their eyes looking at me, it’s almost easier.  I can let go of those unknowns when I focus on the baby girl and the boy in my arms.

And we are still celebrating a lot – that part hasn’t changed.

K:  I think generally I don’t really notice the effects of their differences on my life.  This is my life, my normal.  Generally, I just live my life & every now and then, when I have an honest conversation with a good friend or read a question like this, I actually stop and pause long enough to realize that, yes, maybe there are some effects…

Like I’m exhausted a lot of the time.  Probably from the pace of doing life with a preschooler and a baby and then adding to that mix time coordinating doctors, time spent in therapies, time doing stretches and therapy at home, time spent with doctors that always goes much longer than I expected, time travelling to specialists, time spent dealing with our insurance company and so on… and also my sweet baby is  getting her molars – that may have something to do with the tiredness. 

I suppose that is the biggest effect I feel – just the toll that extra time spent on dealing with the extras takes.  It could become consuming so I have to make an effort sometimes to step away – to stop researching online, to set aside one day to deal with insurance and call doctors or therapists and to take time to just play with my kids or to watch a movie with my husband without multitasking.  I have to make the conscious effort to not allow the extra, time consuming tasks to consume our life.

This year I’ve been learning to say no.  When our son was born, we committed to give him as normal a life as possible.  I still think that is important and it is why we make playdates a priority or vacations or joining a soccer team.  But, I don’t have to be a part of everything because the truth is, our life does have some additional commitments in it and that’s okay.  It’s okay for me to not have as much margin in my life and to say no sometimes to some things.

Our baby spent three months recently in a spica cast (body cast.)  The cast care for that was a ridiculous consumer of time – but I reflect on that time period as being  a really precious time with my baby and for our family as a whole (thanks to so many who helped out & the grace of God.)  Now that she is out of the spica, I am back to doing her therapy several times a day and taping her 4-5 times a week which takes quite a bit of time and planning.

I try really hard to not compare my kids to their peers.  So I don’t usually notice if they are doing something differently or less efficiently… but every now and then something happens to make me aware of the fact that certain tasks just take us longer. While I am so thankful when my child is functional or even independent with a task, there are just some tasks that take him longer since he perhaps has to put on prosthetics or use two hands to accomplish the task or he can only do one step at a time.

I suppose the only other effect I can think of as far as our day to day life is creativity or extra thought put into things.  Like when I drop my son off at preschool, he likes to walk in like everyone else from the car line.  So, first, I pull into the parking lot and get out and put on his prosthetics and unbuckle his car seat so he can get out like the other kids.  Then, I pull into the car line & when I pick him up I do this in reverse.  On road trips, I remember when he was smaller that feeding him was a challenge – he couldn’t really hold a sandwich or Ziploc or whatever so I had to individually hand him each bite – kind of tough while driving. While packing his lunch for preschool, I can’t just toss his lunch into ziplocks- I have to think about what kind of container is the easiest for him to open independently.  I make sure his backpack has his adaptive scissors & his slant board. When I pick out colors for him, I think about which are going to be the most effective for him to color with.  I consider the width and types of lids on markers.  If he wants to color, I have to find his slant board or figure out how to help him hold down the paper.  When he was transitioning to a cup, I bought a ton of different varieties of cups because I wasn’t sure which would be easiest for his mouth issue at that time.  Same thing with silverware.  I used to roam hardware stores looking for a child size tool belt to help him pick up toys when he was struggling learning to stand up in prosthetics & he needed both hands to do that so he was frustrated when he wanted to stand up with a toy.  Certain day to day tasks just require a little extra thought on my part in order to help him be independent.  Our baby isn’t quite to this point yet but I know I will go through similar thought processes for her.  With Ellie, my time is often spent in therapies & I have to think through each day to find time to do her stretches and her therapies and her taping.  If I’m going to be leaving the house, I need to take my taping supplies with me.  If we go swimming for instance, I have to make sure I build in time or cut the swim short to have time to tape her before a meal or nap or bedtime.  I also notice that I look at toys or activities and often have an ulterior motive- I don’t just see it as toy, I think about what therapy goals it will work on.  And when I book flights to see grandparents, I think about if I can fit in a hospital visit on my way to the airport to make the most of our time.  Well checks are never short and, like this week for instance, I thought I’d have an easy Friday hanging out with my kids… and now am cramming in some blood draws and x-rays and running to a local prosthesist to fix a prosthetic foot that keeps twisting.  I didn’t really plan my week to include these events and though these sorts of things don’t happen every week by any means, it’s not uncommon for me to have random appointments like this in my life.

  Sometimes this is mentally tiring as I find that I often just have to think through really basic things or that simple tasks become a little more complicated.  And I’m learning that my plans need to always be flexible.

M:  What are the biggest worries you face for your kids?    

K:  I worry about bullies.  I worry about not being there to protect them or to intervene.  I worry about them someday sharing with me something another kid or adult has done and being past the age when mommy can call the teacher or the parent and settle it but instead I have to stand back & let them work through it…

I worry about their self esteem and whether they will fall prey to the world’s lies or cling to the truths we are trying to instill in their hearts.

I worry I am too inadequate to be the kind of mommy they need.

I worry that someday he will realize that growing up and being Batman isn’t actually a career choice in most colleges.  And also living forever in our home/the Batcave isn’t really considered cool.  Or marrying his mommy for that matter. 🙂

I also worry for their safety – more for my daughter’s as falling is a common problem I think for AMC.  I worry she won’t be able to catch herself and might really injure herself.  And what if in trying to step back and let her experience life, I don’t intervene fast enough when she needs me.

I struggle a lot with worrying about how much I should be doing.  Am I doing enough therapies?  Am I making sure they have time to just be kids?  Should I see this doctor or pursue that surgery?  Mommy guilt can be a terrible thing.

I have learned and have to daily work towards not thinking too far in the future when it comes to my kids.  I don’t know what their struggles will be like someday and worrying about that does us no good now.  I really want to live in the present with them and enjoy today so I fight to resist those worries about things that I can’t control & pray for wisdom to figure out how to handle issues as they may arise.

M:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

K:  Ummm yes.  Yes I have. 

Sometimes, especially when it is cold outside, Will’s prosthetics fall off.  This tends to happen in public.  Like in a parking lot when we are rushing in somewhere and suddenly I realize we are a leg short & we have to quickly turn around & grab the leg before it gets hit by car. 

I’ve also had them fall off in the grocery store and I get an aisle over or at the end of an aisle before I realize what has happened & have to quickly make my way back to the missing leg – left on the bread aisle.

Once on an airplane when he was two years old  we were flying from Boston to Texas and he was flirting with the college cheerleaders a few rows behind us and he casually pulled his leg off & tossed it back a few rows to them.  Their reactions were hilarious because how in the world does one react to a toddler size leg suddenly in your lap on an airplane – & a cute, curly headed toddler smiling just as big as he can at you?  And my husband  & I laughed our heads off as we asked for our child’s leg to be passed back to us.

Or the time when I was hurrying through an airport with my son in a stroller and his prosthetics hanging out of my carryon upside down & suddenly a woman, a stranger, came running up to me fearful that I had stuffed a child upside down in my bag.

Or the fact that my little boy knows words like anesthesia, surgery, spica cast, splints, prosthetics, therapies (& the difference between various forms of therapies) & more – and these are regular words in his vocabulary.

K:  Ok – so I feel wrong inserting a plug here to my own blog but I really covered this one not too long ago right here. 

My biggest goal for others to know is not to pity those of us blessed with a child with differences.  My kids are different.  They have a great life.  We are happy.  We love our family just the way it is.  Yes, we have challenges.  And yes, we have difficult days.  But our life is good.  We wouldn’t change it.  Don’t pity us.

Don’t teach your children to ignore us or to not look.  Teach them to talk to us.  Teach them that it is okay to say hi and that our kids are kids too – they are people first – not diagnoses. 

Ask questions.  Please, I’d love the opportunity to answer your questions and brag about my cute kiddos & all they are accomplishing. 

M:  What is the biggest lesson you’ve learned since becoming a special needs mom?    

K:  Oh my this is a hard one for me… I’ve learned a lot in the last four years.  And in case I didn’t learn some things the first go round, having another child with a different diagnosis helped to reinforce many lessons – and added some more.

I think the biggest (or at least I hope it is)  is gratefulness.  I quickly learned, before our son was even born, that life on this earth is not guaranteed.  God makes many promises to us but He does not promise life on this earth & He does not promise it will be without challenges.  I quickly realized that there were no guarantees that my child would crawl or walk or feed himself or be potty trained or smile (yes, we were once told that there was a possibility he would be unable to smile)…

And so as each of those things has happened, I’ve recognized them as miracles.  I am so grateful.

And I hope it is true that I have learned to enjoy the blessings I’ve been given – that I’ve learned to slow down and enjoy where we are at rather than always thinking of the next thing and missing the present.  I think with the unknowns of our daughter’s future during our recent pregnancy with her, this lesson began to sink in.  I feel like I really treasured each minute of that pregnancy – I loved carrying her because I was so scared she wouldn’t survive without me and I loved being her mommy and protecting her within me.  She has survived and I am so thankful but I find I continue to enjoy her – where she is at.  

 You know, I don’t really know any different but I think that in many cases, parents of kids with special needs or differences are at an advantage here.  Because we are aware (sometimes painfully so) of our child’s differences/delays/etc we recognize how valuable every single thing is – even what everyone else might consider minor.  I remember vividly the night my son first grabbed my hair.  I cried.  I blogged about it.  Why?  Because my child, born with hand differences, had grabbed my hair.  He grabbed. And I celebrated.

I will say too that seeing the blessings in the differences and learning to appreciate them has added some humor to our lives too. For instance, when our child grabbed a toy from a friend as a toddler, of course we had to reprimand him and teach him that was rude.  But.  He grabbed a toy from someone with fully formed hands and ten fingers.  So inside, we celebrated!  Or the times he has run away from me!  Even though I am calling him back to me and teaching him he is not allowed to run away from mommy, inside I am cheering because I am so thankful he can run and it’s so fun to watch!

So, I think my biggest lesson (so far) has been to take nothing for granted and to be thankful for every moment I get.  It is humbling to realize that by the grace of God, I get to experience miracles daily as I watch my children.  I do not ever want to take that for granted.  It is such an honor to be their mommy.

Thanks, Miggy, for including me in your special needs spotlight!