Under our armor

We have a lot of body armor.  Many days seem like we are preparing for battle with all the armor and paraphernalia we have to put on.  This week we added some new pieces, so I’ve been thinking a lot about it all and my love/hate relationship with our armor.

Ben’s armor consists of AFOs (ankle-foot orthosis).  He got his first pair of these at 18 months old.  At that age he wore something called Sure Steps. These are a small, plastic brace that are molded to one’s unique foot.  Ben has very low muscle tone or hypotonia.  He also pronates his ankle inward.  If you watch him walk barefoot, you might find yourself perplexed as to how he walks at all.  It’s like his inner-side of his ankle is actually touching the ground…on both feet.  He also has very flat feet.  The flattest feet that probably exist.  His ankle and foot anatomy and function seem to really amaze doctors and orthopedic surgeons.  Not necessarily something to be proud of…unless you have Menkes Disease, maybe.DSC_0040

When Ben first got these AFOs in the spring of 2009, I really struggled.  These little braces with their cute little sports decoration were the first visual cue to the outside world that Ben was different…a Scarlet Letter, if you will.  It was “one more thing.”  They caused many questions from curious kids along the way.  Just as he was starting to stand and cruise, and have a real need for shoes, these braces meant that shoe shopping would never be the same.  I remember calling my mom in a panic because we had no socks or shoes that would fit under and over the brace.  And in “those days,” online shopping was not as <ah-hem> easy as it is today.  I had not found Amazon.com to save the day yet.  My personal shopper, Ben’s Mom Mom, went on a mission and came back with about 25 pairs of socks and 5 pairs of shoes…pretty much the same as Amazon but without the yearly “Prime” membership fee.  It wasn’t easy, but we found something to fit.  And slowly, over the years, these braces went from something I hated, to something I am so grateful for.  They have grown in sizes and types many times over.  Now he wears an SMO.  The transition to this brace, right before kindergarten was another trying time.  We tried about 5 pairs of shoes before finding ones that worked.  In case you’re in the market, New Balance seems to work the best.  They have an easy-to-remove insole, come in extra wide sizes, and are trendy and non-medicinal looking.  They’re cool.  They make him look cool.IMG_7277

IMG_7274I love his braces now.  They helped him learn to walk.  They helped him to be steady.  They helped him to walk longer distances, climb taller slides, and navigate a large school building over the last 6 years.

While they help him to be the boy he is, and while I don’t like sending him out into his world without them, they are still a big pain in the butt.  They require an XW shoe, only to be found on my precious Amazon.  And only sneakers fit.  No Crocs.  No flipflops.  No sandals.  No dress shoes.  Just sneakers.  Also, they require a taller sock.  Great in these days of cool, neon, tall basketball socks, but not when you’re a foot shorter than most of your peers and therefore have much smaller feet that don’t fit the fun socks yet. He has callouses on his feet because of his braces.  And when he wants to go outside at 4:45pm while I’m making dinner, his sister is crying and his dad is out of town for work, we have to stop to put his braces on.  He can’t do this on his own yet because of his limited dexterity and hand strength.  And when you go on a field trip to a pumpkin patch that requires a ton of walking and a need for the precious braces, it’s a real pain and a sign of differences when your mom has to help you take your braces off to go jump on the bouncing pillow with all your friends (and give said mom a heart-attack because you are brace-less)…it well, sucks!

During the Turkey Trot at school, this past November, Ben was having a really hard time participating in the run.  His awesome adaptive PE teacher was with him every step of the laborious run.  Ben was complaining but didn’t want to stop.  But he couldn’t go further either.  He begged his teacher to let him take his braces off.  His great teacher hesitated for a long time, but could tell Ben really wanted this. The teacher allowed him to lose the braces and Ben took OFF!  He ran so fast, completed the race, and felt awesome about it…without his braces. While the braces, well, brace and support his foot, they are restrictive.  Ben knows himself, fought for himself, and succeeded without his armor when he needed to.  Proud Mama.

Ben’s braces are not easy.  But they are his armor.  He needs them.  They help him to succeed.  And we love them…well, I do…not so sure about him.  But he accepts them.

Kelsey currently wins for having the most armor in the family and she too, needs AFOs.  When she was 15 months old, we took her to Ben’s orthopedist under her physical therapist’s suggestion.  To our relief, the orthopedist first said Kelsey didn’t need a brace.  She was still within normal limits for not walking, especially since she was five weeks early and had many major medical hiccups along the way to keep her from developing on a normal timeline.  This was great because while armor is so helpful, it’s a much easier world to live in if you don’t need it…or at least that’s the way it looks to a mom looking in from the other side.

But, three months later, when Kelsey still wasn’t walking and showed weakness in her trunk, hips, and legs, the same doctor prescribed AFOs.  I was devastated.  Kelsey is a girl.  When I pictured my baby girl, I had visions like every girly mom like me does…cute shoes, dresses, skinny jeans and leggings, sandals and tights (not necessarily together!).  I did not picture tall socks, a plastic calf-high brace and clunky athletic shoes.  And I knew what AFOs meant.  I knew what to expect (or so I thought).  I knew about the shoe search, the clothing restrictions, the Scarlet Letter.

DSC_0002But, like everything else, it was something we had to do, so we did.  Kelsey was casted, cute colors were picked for the straps and the expensive, unwanted braces were ordered.  A few hundred dollars and dozens of shoes later and we have a pair of cute shoes to fit (New Balance, no less!).  But, unlike her brother, Kelsey’s braces have not been as magical.  Her foot, no matter who puts the AFO on, slips up and out of the brace until they become not only useless, but a walking hazard.  I tried.  Her therapists tried.  Dave tried.  Nothing seemed to work.  So, a new pair (different design) has been ordered and will hopefully fix the problem.  Hopefully the shoes will still fit, and more importantly, the new AFO will help her to get the stability she needs to walk for the first time at almost two years old.  Stay tuned…

Her foot should not be this far back
Her foot should not be this far back

In addition to her AFOs, Kelsey wears glasses.  She was first prescribed glasses at 5 months old for astigmatism, (crossing eyes), and near-sightedness.  Her prescription, acuity, and strabismus have all changed, but she still wears glasses.  She is on her second pair (third prescription) of glasses and we just bought a third pair.  This new pair has transition lenses (for sunlight protection) in a new fun color.  We also thought it a good idea to have a back-up pair of glasses. A very expensive pair of uncovered-by-insurance back-up pair of glasses, but nevertheless, it was something we felt she needed.

Just as cute in purple…with a little prune juice on the chin for effects.

The glasses journey has not been an easy one.  You can read more about that here and here, if you haven’t yet.  Right now, Miss Thing has been accepting her specs.  About three weeks ago, she got a new prescription to help her eyes to work binocularly, instead of using one for distance and one for up-close.  Then two weeks ago, her developmental optometrist put some opaque film on the inner corners of glasses.  You can see it in the purple frames above, as well. This is to help with any double vision if her eyes do start to converge inward.  At first these changes caused Kelsey to take the glasses off a lot more than she had with her previous glasses (after months and months…a year?… of trying to keep them on her for even 2 minutes).  But, recently they are staying on for longer stretches, which is reassuring…and one less thing to stress over at the moment.

The AFO braces both kids wear (or should be wearing) and Kelsey’s glasses are their main pieces of body armor that help them to be stronger and to develop like their typically-functioning peers.  Most days I put them all on and go about our day, thankful that they are helping, but there are other days when all the gear is a real drag and I’d like to throw it all in a big fire!  This week, during therapy and doctor appointments, I got to thinking a lot about kids born long before Ben and Kelsey with similar ailments…or worse…that didn’t have access to all this equipment and therapy.  And I feel lucky that they were born when they were in the very modern world of medical science advances.

But like I said, it’s not all sunshine and roses.  We have not hit the age of bullying yet, and I fear for what’s ahead with their armor and differences and how they will be a ‘reason’ to tease my babies.  I know it’s coming.  I’m so thankful for Ben’s school community that have known him and seen him in the halls since he was 3 years old.  He is loved and adored and has lots of friends.  But I know things won’t always be as “easy.”

I don’t have any major medical needs like my children (although I do wear glasses and contacts!) but I definitely have armor to get through my day.  My first piece of necessary equipment for our everyday battles of bus stop drop offs and pick ups, errands, and therapy appointments is our chariot…The Shaggin’ Wagon.  I drive a Toyota Sienna mini-van and I am damn proud of it!  I never had an aversion to mini-vans growing up or in my 20s and early 30s like most of my friends.  A van was always a symbol of a big family to me…which was always a dream of mine (and by ‘big,’ I find four to be perfectly big enough!).  I am an only child and we never had any need for a mini-van.  I always secretly loved the idea of a van, because to me it meant lots of bodies to fill the many seats.  I liked that vision…still do.  We bought the van when I was pregnant with Kelsey but it was much more of a necessity for Ben than it was for us or our baby-to-be.  Ben can’t get in and out of cars like typical seven year olds.  He has trouble opening and closing regular car doors.  He can’t buckle his own seat-belt because of his fine-motor limitations (although this is a summer goal for us!).  The van is so great for Ben.  With push button doors, low entry levels, and many other bells and whistles, the van makes life so much easier.  So I guess the van is armor for Ben too!  Even with Ben in school most of the days and weeks, the van is part of my armor that helps me get through each day. When Dave suggests I take his nicer, newer, smaller, sportier car if the occasion suits it, I get admittedly a little anxious that life will be harder in the non-van.

Besides the van, find it impossible to survive my life without an awesome diaper bag.  After a handful of doctor’s appointments that consisted of full wardrobe changes (and even a stroller purchase), I knew I needed a new bag of tricks.  My old bag wasn’t working. A couple weeks ago I found this one and I’m in love.  I highly recommend buying it on Amazon.* It’s lightweight, has tons of functional pockets, and isn’t meant to be a diaper bag…which always seem to work better for some reason.  And it’s pretty cute and matches everything.  Win!  I might not be able to control a lot of this life I’ve got going here, but I can control my accessories!!  Screen Shot 2015-03-25 at 3.57.32 PMUnder our armor, we are four pretty strong people.  We’ve got to be…there’s no other choice.  But a little extra help from ankle braces, glasses, and cute purses sure helps.

*I have not been paid by Amazon.com to write about my love for them.

Dad’s suitcase

On Monday, which happened to be a day in early March that reached 60 degrees, Ben and I were driving home from speech therapy when he noted, “it’s too bad your dad can’t see this nice weather.”  It was so beautiful.  So out-of-nowhere.  We hadn’t been talking about my dad or his absence recently.  It really took me by surprise.  One minute this kid sounds like much younger child, with his haulted style of speech and mis-articulation of sounds.  And another he’s remembering my dad, who he only met one weekend (April, 2010, at three years old) on a visit to Vancouver, WA after we learned he had multiple myeloma and not much longer to live.

I told Ben how much I appreciated that he thought of my dad, and that it was a good time to think of him because the anniversary of his death was this week.  Yesterday, March 18, marks two years since my dad, Lee Marshall Kirkpatrick, died.

Perhaps from Ben’s comment, or because I’ve been meaning to take the trek for a long time, or because the anniversary aligning with no other plans for therapy or playdates or otherwise..I decided that Kelsey and I would take the long, hour plus drive to the cemetery in Parkville, MD where my dad’s ashes lay.  I was worried about an hour there, and an hour back and how Kelsey would tolerate that much car time.  She was awesome.  She really does love the car, so her mood and cooperation were good.  The snacks, two drinks and endless toys I brought along probably didn’t hurt either.

On the way there, I had time to think about my dad, my grandmother (his mother and one of my favorite people I’ve ever known), and all the memories I have from them.  After my dad died, his nephew and best man in his wedding, went to Washington to clean out his apartment for me.  I was 9 months pregnant with Kelsey at the time and a cross-country trip didn’t seem like the best idea.  My Uncle Bob sifted through my dad’s belongings and packed a suitcase full of memorabilia for me to keep.  While he brought it back immediately, for some reason it took me 2 years to go through.  Some might say we’ve been “busy” but I’m not really sure why it took so long.  I’d say laziness (or other things on my mind) were more to blame than busy-ness.  Whatever the reason, after our long drive to see my dad’s grave and stone marker, I decided to go through the suitcase of his life.

I’m so glad I did.  I found photos, certificates, diplomas, dog tags and Air Force medals, and my grandmother’s Facebook-like journal of family happnenings, births, deaths and job promotions.  I found out that my great, great grandfather fought in the Civil War for the North, that my great grandfather was killed by the milk truck he was driving, and that my great grandmother lived about as long as my grandmother did…into her early nineties.    I confirmed that Kelsey looks more like me than Dave as a baby (becoming a heated debate!) and that my dad loved me and my family very much…even though he didn’t share that as much as I would have liked after he and my mom divorced.

Scan Me (1 year) and Dad
Kelsey Kelsey, 15 months

My dad saved every card I ever sent…every picture my mom or I ever sent…every graduation, wedding and birth announcement…even though he didn’t always respond to them.  I’m so glad he got to meet Ben, but I so wish he was able to share more of my life with me.  I’m so thankful to have all his memories packed in that suitcase.

One neat, little package

I’ve been meaning to write and update you on our follow up visit with Dr. M, the developmental optometrist.  But, that stomach bug I was loving last week turned into a full-fledged family affair.  I wasn’t loving it on days 4-6.  Saw that coming, right?  Yeah, me too.  So…I’ve been busy.

Anyway we did meet Dr. M and it was another great meeting.  She summed our daughter up in one neat, little package.  There were many times throughout the meeting when I was so wishing I had thought to record the meeting.  Do people do that at doctor’s visits?  I feel like I really need to start doing that.  I’m totally listening to everything, but my head starts to drift to the past and future and making sense of it all.  I drift to the mama stuff.  The heart.  The heartache.  And when I do that, I’m missing important details.  Usually having Dave at the visits helps because he’s a much better listener to the doctors.  He doesn’t put (as much) emotion into his listening like I do.  Unfortunately while Dave did come to the visit, he was still suffering from the lingering effects of the stomach bug and it wasn’t easy for him to be his usual, attuned self.

What we did hear was that Kelsey’s current level of development is delayed and can be “easily” explained because of her in utero stroke and hydrocephalus.  The ventricles in her brain were dilated, and not equally so, in the womb.  The right ventricle was larger than the left.  Remember, her right eye is her “bad” eye.  The vision in her left eye is perfect.  Her right eye is dramatically worse. Also, if you look at her move, her right leg is definitely weaker than her left leg.  She lets it drag up to standing, versus placing it firmly or naturally in place.  I put “easily” in quotes because what Dr. M explained makes total sense…now.  And if you really look through it all and think back, it makes a lot of sense.  It fits.  It’s a reason.

Her right leg is often out of alignment, which is making it difficult for her to move “correctly.”

It may make sense, but it is so reassuring to have a doctor tell us this.  No one else told us this.  So when we kept bringing Kelsey to the ER, to the neurosurgeon, to the ophthalmologist, the pediatrician, the orthopedist, and to her therapists no one could validate that something was wrong.  No one took the time to explain all this.  We kept asking why Kelsey was so irritable?  Why wasn’t she developing?  Why!?  Most of the doctors would barely even acknowledge the irritability.  They would acknowledge the obvious delays more readily, but not explain much else about them or what to do besides physical, occupational, and speech therapy.  Check, check and check…but not much growth has been seen in 9 months despite our some times thrice (or four…quadice? fource? force?) weekly therapy sessions.

This week’s first of three therapy appointments. Looking, thankfully, very happy.  Sit and read my favorite book? Sure thing, Lady!

There was one part of the visit that brought me to tears.  Dr. M explained that the world according to Kelsey is scary and it’s been very hard.  You can read more about what she’s been through here. Until strabismus surgery in April 2014, not too much was required of her.  She was a baby.  But around the time when she was supposed to start transferring into toddlerhood, we changed the way she saw the world by “fixing” her eyes.  So she started over again but hadn’t had a chance to learn the skills that are now delayed to begin with.  She said she’s confused, scared, underdeveloped and the world she sees does not comfort her.  This is tough thing to hear for a mom who tries so hard to make everyone happy.  Boo.

BUT, we did learn some positive news.  We learned that she does NOT have amblyopia (a vision development disorder in which an eye fails to achieve normal visual acuity) anymore!  This is a great cause for celebration.  I write that because I need to remind myself of this.  When there are so many medical and developmental obstacles to overcome with your child, sometimes it’s very hard to remember to celebrate the milestones or hurdles that are crossed.

Sometimes it is a wonderful cause for celebration.  When a two year old says his first word, “hi” for the first time, it’s the most precious word you have ever heard.  When a near three year old is able to climb a flight of stairs, it’s simply amazing.  But when you’re in the thick of daily struggles like we are now, it’s easy to overlook how great it is that what was a diagnosis, is no longer one.  I guess!???  It’s hard for me to let go of diagnoses too.  I’m so glad to see them go but I’m not quite convinced they are gone forever.  I’m scorned, I guess you could say.

So back to positive news.  No amblyopia.  She’s using BOTH eyes to see.  The left to see far and the right to see near.  Can you imagine?!  Also, Dr. M reiterated that the strabismus (crossing) surgery worked.  Her eyes aren’t crossing!  Huge!  But, of course, I’m still hesitant and worried about regression. These kids have turned me into one Negative Nelly.  Dave is a quintessential optimist (LUCKILY)!  I am a self-described pessimist but through research, the optimist calls me a pragmatist.  I like that better, anyway.  See?  He sees the bright side of E.V.E.R.Y.T.H.I.N.G.  We are a good match.

Again!  Digression to negative.  I’m sorry.  No more crossing!  No more lazy eye!  Basically everything we’ve done to this point has not been futile.  It all worked!  And that is wonderful because throughout all this I was beginning to think that these last 9-10 months were wasted.  On the wrong path of patching and surgery that only seemed to produce a miserable toddler.  But apparently that all worked.  That’s very good.

Now, Dr. M wants Kelsey to use both of her eyes to see near and far…together in binocular vision like most of the world uses.  In addition to a new prescription for her glasses, today the doc also painted a clear nail polish-like substance on the inner corners of Kelsey’s glasses.  It’s purpose is to reduce any double vision that she might be having.  This will also encourage her to use her peripheral vision muscles more.  When we went in today to have this substance applied, Dr. M was very pleased with how well Kels was using both eyes equally to look around.  I was less pleased with Kelsey’s whining, cup and snack tossing, and flailing of her body against the toys I was offering.  This all amongst a packed waiting room.  “Yup, Dr. M!  I’m pretty pleased with what I see too!!” <Insert eye roll>

She’s a ‘neat’, little package, my Kelsey.  Full of love and snuggles and a laugh or two, here-and-there one minute, and cries and whines and clingyness the next…and the next…and the next.  And while this may sound like every American Toddler Next Door, she’s not.  There is something this baby is trying to tell me.  I will keep trying to figure it out.  Because even though I’m a pessimist, I don’t give up hope very easily.

Why I don’t hate stomach bugs

Who likes a stomach bug?  That’s ridiculous.  Sure, a stomach bug can help a late-30-something lose those couple of LBs she’s been trying to shed.  And maybe a day on the couch isn’t so bad for a bit.  But a stomach bug that hits both kids at once?  Surely no lunatic would find that positive.  But I do.

Now, a disclaimer before I explain.  The stomach bug that has hit my family seems to be a 24 hr. thing.  And having compromised immune systems in our house, I do not take this lightly.  I know one trip to the bathroom can be the difference between a trip to the hospital for fluids to fight dehydration.  I also know that by “putting this out there,” I’ll probably be the family member to get the bug the worst.  And it’ll hit on Saturday morning when I have a date night scheduled.  The parenting Gods don’t take stuff like this lightly when you send it out into the universe.  Seriously.  I get it.  But hear me out…

When Kelsey has a major blowout at her therapy office and I tell the therapists we have to go home…they get it.  When I get a call from the nurse at school and she says Ben has thrown up in the classroom and to come get him, she understands what’s happening to him.  When he comes home and cries because of stomach pains…I get it.  When I tell our friends that my kids were both bit by the bug…they get it.  Everyone understands what the stomach bug means when a 7 year old and 22 month old get it at the same time.  This is not something confusing or hard to explain.  Suck fest.  There are no questions (okay there are some…how long will it last?  Will they be able to sleep?) that can’t be answered.

As an established mother, I knew to get the buckets.  To put layers of towels on the bed.  That a lot of laundry was in my future.


I knew how to prepare, what to expect, and how to handle it.  And that it would likely end in 24-48 hours.  Again, I know it could be much, much worse and last much longer with dire consequences.  I’m not naive.  I saw the norovirus of 2010 and it was not pretty.  Especially to a 22 lb. three year old who was affected for 11 days.

You can probably begin to guess why I don’t hate stomach bugs.  It’s because unlike Menkes, hypotonia, apraxia, diverticulum, hydrocephalus, strabismus, amblyopia, and esotropia that affect my kids (and are underlined as spelling errors because not even Microsoft Word understands what they are), “stomach bug” is familiar and understood (and spelled correctly!).  When you mention those two words, people can relate.  It effects them too.  They know what it’s like.  They’ve been there and will be there again.  They know how gross it is, how bad it sucks and how terrible it makes your kids feel.  You don’t have to explain much.  Say “it’s coming out both ends” and people immediately nod and tell you to say nothing more.

This is what makes raising two kids with special needs so hard.  It’s the unknowns.  It’s the feeling that you’re alone and dealing with something that no one you know has had to deal with.  We do know many families personally with Menkes, and while we find comfort in their stories and being able to relate, each story is so, so different.  We may connect in some ways, but in others our stories are so different.  I guess that’s true of all children, but we are definitely the extreme.  Most medical professionals have never heard of Menkes.  Or if they “say” they have, I’m rarely convinced they could explain it.

As for Kelsey’s much more prevalent diagnoses, we still feel alone.  I’m struggling to find anyone that has a similar story as hers with the vision and behavior component.  We are getting there, but we still have so many unanswered questions.  So many unknowns on how to “fix” her.

One positive to having two children with special conditions is that I am the person who has been there before.  I can remember how ankle braces affected Ben the first time he got them.  I remember that finding shoes to fit was such a struggle.  I remember that he didn’t walk until 2.5 and he didn’t talk until after that.  That we had to sing “Happy Birthday” at a whisper level for two years because he didn’t like crowds or loud noises. That even though last year he couldn’t write or identify all of his letters, he’s now writing sentences and stories a year later.  Experience brings perspective.  And that perspective is definitely helpful the second time around the special needs world.

But even though I was there, it’s hard to convince myself all this will happen for Kelsey too.  Luckily I know someone else, pretty well I might add, who remembers all this too and reminds me when I need to hear it.  But it’s a lonely world.  Even with Facebook to connect us to families who are struggling and succeeding too.  Even with the largest, most supportive network of friends and family we could possibly have.  Even with friends who are googling support networks and new therapies and sending them on a weekly basis.  Even with family members who are sending me shoes to try to fit Kelsey’s braces.  Even with all that, many days are pretty lonely and hearing someone say, “Oh! Exactly the same thing happened with my daughter last week!,” just like the stomach bug, would be so nice to hear.  So reassuring.

But, today I’m not feeling mopey about sickness.  Even with two stomach bugs and one on the way (Dave.  Not me, yet.).  Today I’ve got more perspective on this parenting thing.  Guess I better go get to those patients…