When you have a toddler, people tell you not to blink a lot because “they grow so fast!”

“It all goes so quick!”

“Enjoy every minute!”

“You’re gonna miss this!”

I have no doubt that’s true. I smell the chubby baby’s hair on my lap and soak it in. I hear the seven year old boy ask me to snuggle and I know my days are numbered. But when your kid(s) have so many challenges, it really doesn’t go all that fast. 

Ben’s first five years felt like an eternity. We crawled, tooth and nail, to hit Every. Single. Milestone.  

 This is not necessarily a bad thing. For many reasons including if you know Menkes, you know how lucky we are to even be crawling at all, much less doing all that Ben is. 

I also read a post by another mom-blogger recently who made a list of the pros of having a special needs kiddo. One reason was that they stay little longer. That is so true. My seven year old needs me a lot more than yours needs you. And some times that’s really nice. To feel so needed. Especially as they get older and more independent. 
 

And other times it’s exhausting. Those toddler and preschool years seemed to take forever. “The days were long…” and so were the years. He never seemed ‘two’ or ‘four’ or ‘six.’ Because despite the calendar age, he wasn’t always doing what he “should” be. 

As the first kid, it’s a shame because I know I rushed him so. Relating him to Kelsey now…knowing “two” is still equal to “baby,” I realize that while he wasn’t doing what all our friends’ kids were doing…it wasn’t such a big deal. He was a baby! But I’ve never been great about being different than the rest. 

While we’re discussing comparisons, I try to use these realizations to Kelsey’s benefit. “She’s only two. She’ll get there. It’s ok. If he did it, she can totally do it.” I don’t always believe myself but perspective is a great gift.   

BUT, while those pre-school years were lonnng, the school age years are speeding by. I get it!!! I get what all those Experienced Moms were telling me. Don’t blink! Before you know it, they’ll be 26!

Kindergarten was a big deal. Big kid. Big school. Big deal. First grade sounded older but still little. ‘Know what I mean? And so quickly. All-of-sudden. Even-after-that-never-ending-winter…first grade is over and I will have a second grader at 1pm today.  

To many readers, I know you’re cyber-smiling at me thinking, “Aw! Isn’t she cute. She thinks second grade is old. Just wait, Honey!”

I hear you. I know he’s still a baby but…I finally get it. This year. Right now. It all does go by so quickly. 

I wanted to update you all on how Kelsey is doing.  We are seeing more smiles, hearing more “talking,” watching more play time and spending more time at home, versus in the car or stroller, killing time.  As we wean her off the prednisone, she has added Topamax to control/stop the spasms.  It appears to be working.  We haven’t seen a spasm since in a week!  I feel VERY CAUTIOUSLY OPTIMISTIC about this.  In fact using all caps in that last sentence makes me nervous.  I don’t want anyone to think I’m shouting.  I’m actually whispering in prayer that what we see is truth.  I remain cautious because we didn’t see any spasms last Friday but she had an EEG to prove otherwise.  But, we did see 1-2 spasms per day last week before the EEG on just the prednisone, so I’m hopeful that the addition of the Topamax and the loss of all visual spasms is a good clue it’s working.

As I mentioned, Kelsey’s mood is better as the steroids decrease.  She’s playing for increased periods of time, blabbering a ton and losing some of the cheek-chub she rapidly gained.

She’s still on a lot of meds though.  So much so, that I had to find a nifty chart on Pinterest to help me to track it all.  Thank goodness for technology!

Kelsey’s grandparents (God Bless Them) will be in charge for a couple days next week and I’m hopeful all will go smoothly.  We’ve been excitedly planning this trip for weeks (years!) and when all this came down in early April, this trip was one of my biggest concerns.  Would she be “stable” enough for us to leave?  Could anyone handle her mood swings? (I often can’t!) Would she have to go to the doctor while we were away?  What about all the medicines.  I was really worried.  99.9% about her and our parents, but also a tiny bit about Dave and me.  We’ve already had two trips canceled because of Kelsey’s medical needs and I reeeeeeeeeally did not want to miss this one.

Just a week ago today, though, my wonderful mother sent me a text saying, “Whatever you do, promise me you will not cancel your trip.  We will be fine.  Promise?”  I mean.  Really.  Makes me tear up just typing it.  The support we have for these precious two is incredible.  I am so grateful.  I am acutely aware that not everyone has parents that will watch their kids as much as ours do (multiple times a week!).  And to have parents that agree to watch two children with as many needs as ours for multiple days at a time…amazing.  Thank you MomMom, Nia and DadDad!

When we return from this trip, we will head back to Hopkins the very next day for another EEG.  Boo.  Talk about coming “back to reality.”  But hopefully this trip of ours will be the prednisone for our life.  Goodness that prednisone is a cure-all (not that it cured her) for issues.  Asthma! Allergies! And Pneumonia!  Oh my!  Hopefully the white sands and blue waters will restart, refresh, and re-energize the troubles we’ve been having and things will start looking up.  Kelsey’s birthday is coming up very soon in May.  Maybe this year will be her best year yet.  I sure hope so.

I’ve come to dislike April.  In 2013, on April 25th, Kelsey was first suspected to have hydrocephalus.  We had a routine sonogram and the dilated ventricles were detected at 33 weeks gestation after an otherwise healthy and normal pregnancy.  A day later it was confirmed.  Two weeks later it was obvious she had had a stroke in utero, which likely caused the hydrocephalus.  And days after that she was delivered, via c-section.

Last year, on 4/4/14, Kelsey had strabismus surgery to correct her eyes turning inward.  The surgery went ok, but the days, weeks, and months (year!) that followed proved to be very difficult.  We attribute Kelsey’s poor mood to the surgery and altered vision, but after this April, maybe it was something else causing her unhappiness and lack of development?

And, here we are in April of 2015, and we are going through more challenges with Kelsey Ann.  If you’re behind, Kelsey was diagnosed with Infantile Spasms aka seizures on 4/7/15.  And this April has been another one for the record books.

We were hoping that a heavy dose of prednisolone (a liquid steroid) would knock the seizures out completely and that Kelsey would be seizure free.  That didn’t happen.  She’s been on the meds since early this month and while the spasms decreased dramatically…at least the ones we can see…they aren’t gone completely.

We took Kelsey to have another EEG this past Friday and even though we only saw 1-2 spasms per day, more were seen through the test.  And any spasms are too many.  So now we will wean off the prednisolone and start on a different seizure medication.

Right now, that means that she’s taking three liquid medications in the morning and the same three in the evening, plus an extra dose at lunch.  That’s seven doses of meds for a 23 month old in 24 hours.  Fun stuff.  Actually she’s been great about taking the meds.  Her saint of a father learned that calm voices and talking her through it works very well, compared to the head-lock, cool-loosing mother’s mode of giving the medication.

By this time Wednesday, we will lose the lunchtime dose and by May 4 we will almost have weaned off the steroids.  That is good because Kelsey is definitely experiencing the “Roid Rage” I’ve heard about.  She’s cranky, short-fused and not tolerating much.  She’s eating like a horse and has gained weight quickly as well. 

In the grand scheme, I’m glad there’s a “pill” to cure this disease.  Hopefully, it is in fact, her cure.  We’ve been warned that the search could continue for awhile for the right cure for her.

I’ve slowly wandered into the grieving wonderland of “acceptance,” but it’s still hard to accept.  All we want is a happy, seizure-free, developing toddler.  If that means she has to take some medicine to be there, that’s fine…I guess.  And then I would like the rest of our Aprils, and every other month for that matter, to be healthy for my family.  I know that’s all anyone wants…And life could be so much worse…We have so much to be thankful for…But we could really use a break.  Thank you very much.

This past week has not been an easy one. We are really struggling with one more BIG thing added to our list of woes.

Kelsey’s mood has been pretty dismal until some relief yesterday afternoon.  Coincidently the cold she’s been fighting seems better today, so the terrible mood could be related to her cold symptoms. I’m hoping so, and that she will start feeling better and willing to be put down, play, and smile a little more.

The spasms have decreased dramatically. We thought this was great. We have been tracking them very scientifically.

Not. But it does show that the spasms have decreased from our estimated 10-20 before beginning the prednisolone. Which we never, to my dismay, tracked like this. It seems like a ton when they are happening, but when you write them down they don’t add up to quite as many.

Yesterday she only had one spasm. So we emailed the neurologist, thinking this was a cause to celebrate. Instead, she was hoping they were gone completely already. This was not the impression we were given at our appointment last week. Yesterday she told us if she had another one yesterday or today, we’d up the drugs and be on a new timeline. We were pretty depressed. We thought we had two weeks for them to be gone. Guess not.

Unfortunately today she had two spasms. One while I was snuggling her in her nursery this morning. Another while we were out to lunch with MomMom. Two would have been unheard of a week ago, but today it was two too many.

So, tomorrow we will add a fourth dose of prednisolone. I reeeeeeeeeeeaaalllllllllly hope this doesn’t make her mood any worse. It is hard enough to care for a toddler with developmental delays and vision problems. The bad mood. Well, it does NOT make life fun.

Thanks for the calls and texts and the outpouring of love last week on Facebook and the blog. It really means a lot. We feel like we’ve overextended our sympathy needs from our family and friends in the sick kids department.  But each and every diagnosis and hurdle is just as hard as the first. We may have thicker skin, but that’s it. We are hurting just as much, since our baby is hurting…again.

Good News– We have a name for the jerks/startles/hiccups that have been affecting Kelsey the last three months.  They are called Infantile Spasms.  Yesterday, Kelsey had an EEG at Hopkins to find this out.  She did very well with all the electrodes on her head.  She even slept before the technician was finished putting them on and for a good bit of the monitoring.

Bad News– They aren’t as benign as our pediatrician and developmental optometrist made them seem.  Kelsey is having a good bit of seizure activity.  While it’s good to have answers, I HATE having ANOTHER diagnosis for her and our family.

Good News-Seizures are very treatable.  The neurologist we added to our docket yesterday prescribed prednisolone.  It’s the liquid form of prednisone that most of us are familiar with as a steroid.  She will be on a high dose of the steroid for a month.  That’s it.  The prednisolone should stop the seizures pretty quickly if…

Bad News-…it works.  While treatable, seizures aren’t predictable.  You may have noticed I referred to the spasms as “infantile.”  But Kelsey is one month shy of two years old.  She hasn’t been an infant for awhile.  It is abnormal to have these types of spasms at her age.  I swear.  Our “luck” on this stuff is incredible.  So, the doctor isn’t exactly sure the steroids will work.  They usually do, but Kelsey’s case isn’t usual.  Awesome.  If the steroids don’t work, we will know pretty quickly.  We should see them stop within two weeks after diminishing rapidly.  There are many other seizure drugs that we can try if this doesn’t work (but they all come with their own side effects so I’d rather not get to know them.

Good News– I’m all out of it.

Bad News–Steroids can cause some unpleasant side effects.  She will be on them for a short period of time, but it’s a high dosage, so we shall see how it all presents itself.  We were also given Zantac to be taken twice a day to help treat the upset stomach that she may experience.  And, we were told that irritability can also be a side effect of prednisolone.  NOOO!!!!  Remember, my recently very sweet baby just had a 10 month bout of irritability.  I’m really hoping that the doctor’s definition of irritability is different than our very real experiences with recent irritability.  The girl we spent all day with at Hopkins who was charming people left and right and smiling, laughing and flirting to get our attention makes this new pill a little easier to swallow.  I’m very scared of irritability.  But, the doctor assures me it’ll “only be for a month.”  Fingers crossed.  Sleeplessness and an insatiable appetite are other side effects.  Just what every mother-of-a-toddler wants to hear…sleeplessness.

Good News-I guess there is more…I’m easily distracted to focus on the negative.  The doc said that kids with seizures also experience delays.  Yep.  Kelsey is delayed in many areas.  But, after the seizures stop, development starts to pick up again.  I’m looking forward to some new milestones.  We’ve been “stuck” for many months at a certain level, despite our some times four therapy sessions a week.

Bad News-Once we stop the seizures, it doesn’t mean we’ve stopped them forever.  And this is the scariest news.  The unknown.  Once someone has seizures, the likelihood of them developing again is there.  And if they are exactly the same type of seizures as she’s having now, we can treat the same way.  If not, we’ll have to try something different.  A seizure can look like the jerks Kelsey is having, or they can present in a very wide array of displays.  She could “just” stare off in space, for example.  But all of it is a pause in brain activity (my own understanding).

That’s it for now.  I tried to end on a high note, but it just didn’t happen.  Please keep us in your thoughts and prayers.  We still need ’em!  We will be making lots of trips to the pediatrician and hospital in the next month, so we will need strength and patience.  Thanks for all the recent love, as well.

We had a wonderful Spring Break and Easter this past week, despite all four of us getting a cold!  We were able to take a trip to a beautiful hotel on the Chesapeake Bay for two nights.  We ate, drank, enjoyed the views, played mini-golf, threw shells into the bay, roasted s’mores, napped and swam in the indoor pool.Ben, just this month, has finally learned to swim!  We are so excited!  He has worn some sort of floatation device until now, but Dave and I were determined that he would know how to swim by this summer.  And after private swim lessons all winter, he does!  Our first goal was simple… for him to be able to not drown.  The doggy paddle was good enough for me!  But, after seeing his growth this winter, I think I may have set my expectations too low!  Go Ben, go!

Kelsey surprised us a lot this past week and month too.  The new glasses prescription and occlusion tape (inner corners of her glasses to prevent double vision) seem to be making a positive difference in her mood.  I have been loosely doing vision exercises with her but at her current level of development, that is kind of difficult.  Food seems to be her biggest motivator in all things therapy, so we use that for a lot!  Snacks are our friend.  We use Gerber Puffs to cruise the coffee table, Cheerios to learn to sign “more,” and Veggie Sticks to track and follow with her eyes.  Whatever it takes, right!?!

Around the same time as our appointment with the developmental optometrist, I also stopped giving Kelsey Miralax for her constipation.  I’m a bit ashamed to admit that she was taking it pretty consistently since she turned one.  Around the time she fully started eating solids, she became chronically constipated.  With her doctor’s continued blessing, I’d give her the Miralax (a very small dose) everyday.  Well, without sharing too much information, apparently Miralax can do funny things to your body besides it’s intended purpose.  I tried it myself to see what it was like and was often suffering from some abdominal pain.  Besides that clear reason to stop, even though it helped her, I didn’t love that she was taking it…despite her pediatrician’s approval.  So, I decided to try prune juice again even though it failed to help her months ago.  Well, it worked this time and she’s been able to maintain her regularity without Miralax!  If you’re keeping up, the new doctor, the new glasses, the vision therapy, and no more Miralax all came around the same time.  Not to mention the fact that the temperatures have started rise and we’ve been able to get outside more.  I’m not sure what, exactly, has improved her mood.  A combination of all of those things?  Just the vision improvements?  Just the lack of Miralax in her system?  Whatever the case, I’m begging the universe to let it continue, despite the fact that I just “put it out there.”

I’ve been keeping my trap shut about her mood improvement until now because it seems whenever I celebrate a change, it stops.  I’m sure other parents can relate.  “He finally slept through the night!!”  Not any more.  “She’s taking longer naps!”  Haha!  Yeah, right!  I’m definitely superstitious when it comes to sharing something I’ve been wishing for…especially when it comes to the kids.  So let me take a minute to KNOCK ON WOOD!!!  So our trip was great even though Ben and Dave had a cold.  Kelsey’s mood was wonderful and she was enjoyable to have around again, and it was time for Easter!  Annnnnnd, guess who woke up sick just in time to see what the Easter Bunny brought?  Yep, Kelsey had a full-blown cold on Easter morning.  Things didn’t seem positive when I had to wake her from a deep sleep to go to church, not when she woke up after a very short afternoon nap, nor when she was so cranky and tired that she had to take a third nap right before the family arrived for dinner.  But, my prayers were answered!  Kelsey has not made a family gathering enjoyable for her father or I in about a year.  I had prayed that she would be as happy as she has been at home from at least 4-6pm.  And she was!  She played a little, observed the egg hunt, ATE DINNER WITH THE FAMILY (this hasn’t happened…ever?!?), and even participated in the gift opening and dessert.  It turned out much better than any gathering we’ve had in a long, long time.  Dave and I were/are so happy!  Hopefully there are more in our future.

It was was a great week, but for now, it’s back to our reality.  Tomorrow, we are heading to Johns Hopkins so Kelsey can have an EEG.  While Kelsey’s mood has improved with all these changes, her little startles have gotten worse.  I mentioned these little jerks Kelsey is experiencing before on the blog here.  Two doctors have told us not to worry, but my gut is telling me to get another opinion.  We decided to worry when a spasm or two caused Kelsey to lose balance and fall down.  And some times when she’s really tired, the little jerks cause her to cry.  So we are going to see a neurologist tomorrow.  Hopefully she will be able to explain these and calm our fears.  If you’re the praying type and could pray for us, I’d be so grateful.  If not, and you could cross your fingers or do a little dance, that’d be great too.  It all works or we wouldn’t be where we are today!

Sorry this post was all over the place.  Our life is a daily roller coaster of emotions.  I’m so happy to report that we have been “up” a lot more lately.  Hoping this trip tomorrow to the hospital doesn’t bring us too far “down.”

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.

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.

I 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.

But, 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…

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.

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!!  Under 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.

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.

Me (1 year) and Dad

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.