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Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.

1.16.2016

The looming cloud of death



None of us know when our last days will be.  None of us know when our child’s last days will be.  All of us should treat life like it is precious and treasure every moment with our kiddos.  This is true for all parents, but…

For parents of children with special needs, death hits a little closer to home.  It’s a rarity for typical families to have to bury their child.  For us, the rarity would be that our child lives into adulthood.  We know it’s coming.  We aren’t afraid for her of what will come afterwards because we trust in the complete perfection of eternity.  But there is a gaping wound that the scab often gets abruptly pulled off and we grieve what’s to come for us again, and again, and again.

Grief hits at the most random times.  Sometimes it’s watching a father walk his daughter walk down an aisle to a groom, knowing Shawn won’t have that opportunity.  Sometimes it’s a child’s graduation, speculating if that will be something we will get to celebrate with her.  Or hearing parent’s complain about their teenagers, just wishing that Maggie could try to sneak out of the house.   It could be a birthday party and realizing how we aren’t at the same typical milestones.  Or not being invited to a birthday party, because she can't build the same relationships and nobody knows what to do with her.  Or other times, it’s listening to brothers and sisters bicker, as I try to understand what Maddox’s perspective is on siblings and how it will be to walk him through the grieving process when she is no longer with us.  All the things that typical families take for granted and even wish they didn’t have to deal with, we grieve over and for.

Other times, it’s even more in our face.  When another family no longer has their little in their arms to hold and love.  We know it’s coming.  We don’t know when, but we know the inevitable will come to us too.

Our sweet friend Harper’s death has hit hard.  Real hard.  Harper was one of the first children I ever found similar to Maggie.  And to this day, Harper is the one child that is the most like Maggie out of any kiddos we know.  The Howards’ perspective on not allowing a disability to stop them is very similar to ours.  Harper is just a few years ahead of Maggie.  Early on, Shawn would hear all the time, “Harper is doing this,” or “Harper’s mom said this or tried this.”  At one point, Penny told me, “Your child has a seizure disorder.  You can’t take her to the hospital every time she has a seizure.”  We didn’t know what we were dealing with or up against at that time.  They were already 2 years into this beast.  We did get admitted that time, but from then on took the same perspective of “we only take her to the hospital if we think she is dying.”  And…we haven’t been back to the hospital since.

When Maggie was tested for the same genetic disorder, CDKL5, I was convinced she would come back positive for it (it was negative though).  She presents just like Harper.  Some pictures I look at of Harper recently, I have to do a double take even, thinking it’s Maggie for a moment.  The girls have the same mischievous grin (when we see it), the same sassy personality, the same sparkle in their eyes, the same confident boldness, and the same fighter spirit.

We would see Harper try something and it would plant a seed for us to make something happen for Maggie.  Swimming, putting her on the horse at my mom’s (side note…Mom started offering therapeutic riding at the campground and ironically went to training at the same facility that Harper used), therapies, vision stuff, supplements, food, equipment.  This list could go on and on.  If Harper tried it, we would put it on our list to try at some point.  They shaved the back of Harper’s head, which made me more aware of Maggie’s head becoming aggravated and her hair getting matted from the friction of her head moving back and forth against the wheelchair headrest.  I took notes as I saw them invest in their marriage and actually leave Harper for them to go on a quick vacation.  Harper even welcomed in a baby brother just months before Maddox was born.  We watched as they proved it could be possible to have a little one and still care for each child well.

Unfortunately, I wish I could stop taking mental notes and leave off at the end of 2015 with the best year of Harper’s life.  But unfortunately, like Harper and many of our special kiddos, the tide quickly turns and suddenly they are gone.  We anticipate that we will be in that boat at some point.  We don’t know when, but every little cold and unexplained increase in seizure activity puts us in the point of wondering if this could be it.

Last Sunday, after already dealing with a weird skin issue, Maggie was clearly not feeling well at all and looking very pathetic.  As I told friends that day…”I don’t have the emotional energy to deal with her not being well right now.”  That looming dark cloud had already been hovering over us.

So what do we do…

We quietly mourn alone.  It’s too much for others to deal with (we get that and don’t expect it to be any different).  It’s even too much for Shawn and I to try to talk about with each other most the time.  It’s unspoken and we both know the cloud is there.

I wish I could say the dark cloud causes me to step up my game as mom and love on and celebrate every little thing with the kids.  While I do hold them a little tighter at times, I also find myself distancing myself from Maggie, in attempt to protect my own heart.  I find myself not as responsive and not having as much fight in me for her.  Her needs are met and she is still well taken care of.  She just doesn’t have my whole heart right now.  She needs that and will get me back, I am sure, but for now, Mom retreats a little for self-preservation.

We rejoice that we have others lifting us up in prayer.  Since Maggie has started her antibiotic she has been in a great mood and even better than I could ask for as far as temperament right now.  God knows my limit and an uncomfortable seizing child right now could just be my breaking point.  Keep praying for her please.  The skin issues are looking better too.

While others run away, we run toward those that are coping with death.  It is still so difficult for us to comprehend, but we try to encourage and support the best that we can.  We know that someday we will need others to run towards us.  Maggie and I are pumped that we found SUPER cheap flights and a rental car.  We will be flying into Texas for Harper’s memorial party and back out all in one day for less than $100 total!!  We will go, and I will take mental notes, even throughout Harper’s memorial, to get ideas for what we will one day have to do.  Being there to let the family know how special and important they have been in our journey is the least we can do.

We keep on keeping on. Curling into a ball won’t get us anywhere.  We know this isn’t the first child, and we sure know this isn’t the last.  Sometimes Shawn and I will even say, “when this child or that child goes, that is really going to suck”.  (yep…how many of you have that dinner conversation?!?)  Shawn did have to remind me the other day of the lesson a dear friend taught me as we stood in our first ER way back at the beginning.  “Whatever is true…let your mind dwell on these things.”  The truth is we have 2 sweet children right now.  The truth is we long for eternity.  And while we regularly witness parents burying their children, some are more difficult than others.   This is a difficult one for this Momma.

The cloud is a little darker and closer and lingers a little longer.



**I know this is kind of a downer of a post.  In the nature of transparency, with hopes that it might help others, getting these emotions out there is part of my healing process.  We are ok and we will be ok.  And…we are ok with saying that sometimes life just sucks!!**
To learn more about Harper, look up Hope4Harper on facebook or at www.hope4harper.com

10.05.2015

Therapy for Mags and she'd love your help!!



Wowzers...it's been over a year since I posted on the blog!  I have kind of kept up on FB, but I think my lil M & M have kept me a little busy!!  Promise...I'll try to get back to posting on the blog.

It has been so much fun to see Maggie’s development over the past couple of months.  Throughout our journey, I have explored the concepts of an interesting therapy.  It is called ABM (Anat Baniel Method).  I read the book “Kids Beyond Limits” early on and have tried to implement many of the principles as I work with Maggie.  In May I, along with other special needs moms and Maggie’s home physical therapist, had the opportunity to attend a workshop to gain some more insight.  Lucky for us Maggie was also used as a demonstration model with Anat herself.  We noticed changes with Maggie’s posture and neck after this one session.
Over the past few months, our PT has been strategic in working with Maggie and applying techniques similar to ABM.  Amazingly, with these techniques, we rejoiced at Maggie “finding” her hands, making the neural connections for her brain to acknowledge that her hands are attached!  Tears flowed as we watched her explore this new part of her body.  Clearly, the connection has been made and the awesome thing is that it has sustained.  She continues to have them in a relaxed posture and attempt move them regularly.
The next 2 weeks Maggie is on fall break from school.  We all agree that the learning switch is on and it is a prime time for this therapy.  ABM therapists have found that doing intensives with 2 sessions a day for clustered days can be most effective with kids.  So, we have her signed up for 10 sessions over the next 2 weeks of her fall break.  We are extremely excited to see the progress she will make over these 2 weeks.
Please consider helping us out.
1) praying for Maggie to be in therapy mode, ready to learn and make connections.  Also…for endurance for Maggie, Maddox, and myself over the coming weeks.  We will be driving north of Denver for a morning session and then north downtown Denver area for an afternoon session with another therapist (variety is good too)
2) financially…These intensives will cost around $1000 for these 2 weeks.  Since we have moved to Colorado, my extra income has allowed us to pay for her weekly IMT therapy, keeping her red card active (doctor’s visits, etc), obtaining her oil, and weekly travel expensess for therapy.  However, with a big intensive expense like this we would love some help from all of Maggie’s friends and family.  Her paypal is miracle4maggie@gmail.com.
In other news...Maggie is in preschool and she has been doing awesome!!  We have also spent lots of time with Grandma's and Grandpa's over the past few months as I type this sitting next to Grandma Carla!

9.22.2014

Countdown is on!!




30 weeks last week….the countdown is on.  Less than 10 weeks to go!!  I’ve had a lot of people checking in and requesting belly pictures lately.  I guess it’s time for a Selmeski update.  Unfortunately, I guess we actually need to take some pictures of prego momma.

Maggie was not as impressed
The butterflies were so much fun!
 August was filled with some very special visitors.  Two of my best friends were out within a week of each other.  Amber and her family had their family vacation out here.  It was great to explore some Colorado attractions with them.  The Butterfly Pavilion, the Cheyenne Mountain Zoo, and chilling at the beach at Chatfield are worth taking other visitors to.  Amber was tremendous help in getting my kitchen packed up too.  The best part though was just hanging out with the Deckers.  Maggie seemed to really like having little friends around too.

Amanda and I had the weekend to hang-out when Derek was in a golf tournament.  The Newtons are by far our most frequent visitors wherever we live.   Shawn questioned them always following us.  It just happens to be they have “wrestling”, or “golf”, or some reason to be “in the area”.  We figured out while we were in Tennessee, they were down to visit at least 3-4 times.  Since we’ve been out here in Colorado, they’ve been out 3 times.  And we LOVE it!!  They operate in the same just jump in the car and go world that we do.  This time was a quicker trip out without the boys, but a nice chance for Amanda and I to just catch up.

We were also able to catch up with our RAGBRAI friend Lisa while she was out here with her cousin.  Lisa and Sarah both noticed big improvements since they last saw her in April.

In August we also successfully moved off campus to a great house in Castle Rock.  I’ve struggled a bit when I pull into the neighborhood and sit back in the house because I know we are living in a place well beyond our means.  I’ve found myself explaining all the time…”but we are getting a really good deal.”  There is no way our student budget of piecing together income that mostly goes to therapy and fuel to get us all over, should be able to afford where we are living.  Then it hit me….God is blessing us at this time with a beautiful home, and that is ok!  We are so fortunate that our friends offered their home to us for a price we can afford and there is nothing to feel guilty about by being blessed at this time.  A few of our favorite things….we have an attached garage.  I love it because I can easily get Maggie loaded and then gather the rest of everything we need.  Shawn loves it because, well, it’s a garage.  We realized that since we have been married, we have never had a garage.  He had a whole shop in TN, but me…I’ve never had the luxury of parking in one.  Winter with 2 little ones will be nice!!   Also, we have a washer and dryer again and don’t have to go during a scheduled time to use little rinky dink washers that don’t get the job done.  Our other favorite is that we can grill out!!  It’s the simple things!
Packing and moving and unpacking was a little daunting, knowing we would be doing it all over again probably in a year or so.  But, we do seem to be getting settled!  And, we have room, so we can welcome visitors any time!!  (Also, let me know privately if you need the new address)

Going for a stroll with our friend Michaela for her birthday!
On the Maggie front, she continues to be doing well.  Little sassafrass and momma are working on our communication skills.  Her continual communicating (aka fussing) when the need is being met is about to drive momma batty.  Example…she’s clearly hungry and I am shoveling food in as fast as I can, but the fussing continues full force until her stomach realizes there is food in it, which is when she is nearly finished.  There are many more days that Mommy has to start using a firm…”that’s enough” voice, as she is 2 and definitely demanding!!  However, gas bubbles that can’t get out do give us all a run from their money.  And we’ve had a lot of those lately.  We’re trying to figure out this digestion component the past few days.

Maggie is a camping trooper!
Seizurewise, my latest estimate is that they are down by over 75%.  With the exception of some random days, we just are not seeing that many spasms.  These tonics that she developed a couple of months ago are still appearing, but they don’t seem nearly as prevalent as they were a few weeks ago.  Also, we have begun our final pharma wean.  It should take about 8-10 weeks to get her off Keppra, and then we will be done with the pharmaceuticals!!  (Disclaimer: I had this typed up last week, and then over the weekend, she had tons of gas issues and we were seeing more spasms again….)

She battled a cold a few weeks back and we could tell she felt rather puny.  Aside from ongoing irritability and edginess, she really has recovered well.  It seemed to take a good 2 weeks, but that appears to be the norm for what’s floating around.

Two weeks ago, she finally moved up to the 2 year old room at church.  I realized she would still be in the nursery at 10 years old if we waited around developmentally and she’s not a baby any more.  Time to give her the big girl experiences.  There will be some adjustment to being in this room, teachers figuring her out and how she can be involved and mommy’s expectations may not always be met from time to time, but she’s done great.  The kids love her and will bring toys over to her or the one day I went to pick her up and a little guy was standing next to her rubbing her hand, talking away to her.  This warms my heart so much!!

Neither are real thrilled about the first day of school.
Also, we have been trying to implement her “school”.  Between her not feeling so hot and running to other appointments, we have not been the most consistent with a schedule, but she does seem to be doing really well when we do.  I can watch her little brain process away.  Since we did the program in the spring, the biggest improvement I have seen is with her vision and tracking.  She is definitely more aware and looks for the light with her eyes.  The other cool thing is our new crawling ramp.  Though she will be rather vocal about having to crawl down the ramp, she really is a super star.  Mommy helps to get her toes dug in so she can push off and she needs help getting her arms up to move forward, but she puts forth a lot of effort to get herself moving down it.  The cool thing is she completely knows when she gets to the bottom and can feel the carpet on her cheek.  Then she’ll calm down fairly well.  And, we have noticed that the motor activity has increased her attention during the visual/auditory/olfactory learning time.  We’ve been thrilled with what Daddy came up with for a ramp. (and we have room for it here…kind of)

Daddy's big projects at church look GREAT!!
In other news, Shawn began the new semester.  However, within a couple of weeks, he quickly realized just how overwhelmed he is.  Doing all the technical stuff and worship at the church, working in the body shop, going to school, having a daughter with severe disabilities, and a baby on the way.  It doesn’t help that there were 2 big projects at church that demanded a lot of time right at the beginning of the semester.  Probably should not be considered a compliment, Shawn’s advisor pointed out that he is the most overloaded student she has ever met.  She asked when was the last date night and made sure he realized how bad it is if he doesn’t know what a “date night” is.  He dropped down to just a couple of classes and his goal for this semester is to learn how to implement rest effectively!  We’ll see how this goes…

All seems to be going well with the baby.  We just transferred all my care down to Castle Rock, so instead of driving 40 minutes to deliver this baby, we are less than 5 minutes from Castle Rock Adventist.  If push comes to shove, I can load Mags in the wheelchair and walk the 1.5 miles to the hospital ourselves.  J  At my 30 week appointment last week, I was within a lb of my full Maggie weight.  With 10 weeks to go, I have a feeling I might be gaining a bit more with this one.  Shawn would be quick to point it is all in my thighs!!  I might agree a bit.  The baby is crazy active though.  I’ve been seeing a chiropractor to keep me in alignment, and I think keeping my hips for rotating forward like I tend to do, has helped keep my pelvis opened up and provided room for “Elvis” to freely move about the cabin.  Now that we are getting closer to baby, we need to get serious about a name for this kiddo.  Though we are waiting to find out if it is a boy or girl, to all of us, he’s a he.  Ironically, everyone that cares to comment also says he.  Poor girl if the baby comes out a she.  At any rate, since we are planning for boy we are needing help for boys names.  If any of you saw the ones Shawn has brought to the table, you know just how desperate we are.  We are now taking suggestions.

One more side note and some exciting news…it is possible that Maggie might be able to travel soon.  With the plants being grown as hemp under a farm bill vs. as marijuana, the Stanleys will soon be able to ship Charlotte’s Web throughout the country as a “dietary supplement”/”foodstuff”.  This designation is similar to if we were using hemp seeds or hemp milk.  It is an ambiguous part of the law, but by being grown as hemp, it provides much more flexibility.  We’re still waiting to see how this all pans out and will navigate the waters as we feel is in Maggie’s best interest.  Maggie is on THC-A, which proves to be extremely beneficial for her, so if there is any travel, she would be without that for the duration of travel.  We’ll see…


Sweet Smiles!!  Love when we see these

Douglas Co Fair