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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.

6.01.2016

New House and Necessary Endings



Over the last nearly 2 years, we have been extremely blessed by gracious friends that have allowed us to rent their home for a fraction of the market value.  This is the home Maddox came home from the hospital to.  It’s the home we walked from for Maggie’s first school experiences.  But it still wasn’t ours.  We had been “looking” for a home off and on throughout this time, but hadn’t landed on anything.  At the beginning of the year, the homeowners let us know that they would be wanting to sell the home this spring/summer.  Given Maggie’s great school situation, our one request was that Maggie could finish out the school year.  Wish granted with no reservations!!
Date night (the one that we’ve had this year) became a pro/con, what do we do list making session.  We talked through location and priorities and non-negotiables vs. no biggies.  Take one guess at that non-negotiable….if you guessed, must have garage…ding ding!!  We already made the mistake of buying a house without a garage once in our marriage and won’t again.  There were lots of variables but the direction was unclear.
During drives between Littlteton and Castle Rock, I would pray through that location that something would become available that would work.  I also got into quite the discussion with God a couple of times.  For some reason, the houses we have looked at have been dumpy dumpy places.  In part, because Shawn’s abilities would allow us to build our own sweat equity into the homes.  In part, because of what our budget has allowed for.  But what God revealed was that I didn’t believe we deserved much better. That we needed to buy something run down and fix it up ourselves, because that is what would be justified for us.  Throughout this conversation with God, my unbelief became clear.  God revealed that we do deserve something better.  My prayers became…bless us in this housing search far beyond anything I could imagine.
As the conversations continued, we still didn’t have a lot of clear direction.  We weighed out buying the house from the homeowners.  Buy property and build a shipping container home (still think this could be cool) or build a Quonset hut.  The possibilities were endless.  Then…. a conversation with a new PURE Haven Consultant (also a special needs momma friend).  “I don’t know how much I’ll be able to invest in the business over the next couple of months because we are going to need to be getting renters out of our old house and get it sold”.  “I hear ya, we are going to need to be moving ourselves and try to find a place to live.”  Ha!  So, I asked a little about the house that they were going to try to sell.  She told me a bit about it.  I told Shawn about it, but the price seemed to be way out of our budget.  Not really an option.  A couple of things in particular did stand out to us though.  The house was wheelchair accessible…though not completely imminent right now, it is definitely a need coming up in the next few years.  It was on .66 an acre, so not a 2 ft x 2 ft backyard.  The 1300 sq ft basement is unfinished, so with Shawn’s skills we could still build equity into the home.  There are at least 4-5 other special needs families in the neighborhood that we know, extra “Aunties” to love on our kiddos.  Shawn was happy to know there was a three car garage.  And one really intriguing thing was that though the house was in an HOA (Home Owner’s Association-pay to have neighborhood standards and in our eyes have people tell you what not to do), it would never be enforced due to a lawsuit from one of the neighbors.  Hmm… Shawn has had a handful of letters sent threatening fines because of a trailer in the driveway or working on a car, etc.  HOA’s are great for some people, but terrible for us.
So, we decided we would at least look at the place just to make sure we weren’t passing something up.  Shawn wasn’t able to meet up when the kids and I walked through.  So he swung by and the renter let him through.  We both walked away with “hmm…..that has a lot of potential and would seem to be a good fit for us.”  A couple of things that seemed as God clearly saying, “see, I got this”.  One of my dreams is to create a kind of drop in therapy center, where other families could come and use our equipment, essentially we could "play"/therapetize together. The house had it’s own “therapy room”.    Also, a little background….our dogs have been at Grandma Camp since we moved from Tennessee.  At my mom’s house they have become a lot less tolerant of each other and are now always separated.  We have pondered if we will bring them both back, or how in the world we could make it work.  As I walked into the backyard of the house, I noticed it was all fenced in.  Great for a dog.  But then, the ah-ha moment.  It had a separate fenced in yard.  Wow…confirmation that God was paving the way for us.  (still not sure that both dogs will come, but at least it is a glimmer of a possibility)
I don’t know what all really transpired from there.  We crunched the numbers, and with the really low interest rates, it seemed to be a legitimate possibility.  In reality, the mortgage is less than rent would be for a semi decent place in SW Denver area.  And, to us, the cost was actually worth the value of the house and property, not inflated like in Denver.  There were other major God moments along the way with money we anticipating for down payment not being available, but then are tax return making up the difference plus some.  One thing lead to another and next thing you know, there we were sitting at closing.  Now...ready for a chuckle, one of the inspection concessions was deck repair.  In place of those funds, the seller’s offered us the older LandCruiser they were going to try to sell.  Of course my husband said, “sure we’ll take a car”.  Leave it to the Selmeskis to walk away from Closing with a new house and a car!!  Also, the numbers at closing didn’t quite add up with our wheeling and dealing with car trade for allowances, etc.  I was ready to write a check back to the seller’s, but they declined and told us not to worry about it.  And then after everything, knowing we were preparing to buy a second hand washer/dryer, they just gave us their old (not so old) set….and delivered it to the house.
Blessed beyond anything we could imagine???….I think so.  Yes, the mortgage is going to stretch us a bit and we are going to have to get back to being more disciplined on a budget, but the house is a perfect fit for us!!
The bummer, however, was a lot of goodbyes (or see you laters) this week.  The house is east of the Springs, which means, while we are much closer to many of our Realm of Caring families, we are now much further from where we have considered “home” the last 2 ½ years.  The major pulls for us staying towards the SW Denver metro area was our amazing church family at the Rock of Southwest and Maggie’s providers.  Had we stayed in Douglas County, Maggie would have had the entire same team of teachers and specialists for her 2nd year of preschool.  Instead, her last day this week was a day of not just goodbyes for the summer, but really goodbye and tears on Momma’s part.  Her team has done a tremendous job loving on her, providing for her, and cheering her on.
Last day of school was followed by goodbyes to Maggie’s great music therapist.  And the day before that, our PT….that began seeing Maggie while we lived on seminary campus, shortly after we got here.  Ms. Kristine is one provider here that can really attest to the leaps and bounds Maggie has made.  She saw Maggie at her more critical state and has walked alongside our family for the past 2 years exploring different modalities with us and celebrating all the small victories with us.  As we said goodbye on Monday, Maggie was oblivious to what was happening, but we were both in tears.
And then our Rock family.  This church was such an answer to prayer from the moment we walked through the doors that first Sunday evening.  The relationships we have built have become family to us.  We were blessed to have the worship team pray over us between sets and we shared one more lunch out with some friends.  I think I might still be in denial that we won’t be back there next week.  It’ll probably hit me when we sit next Saturday evening and ponder where in the world will we attend in the morning.

Now as I sit in a big ol house surrounded by boxes and projects, we anxiously wait to see what adventure will unfold.  We look forward to the opportunity for ministry to take place in our home.  We anticipate lots of bonfires and grill-outs.  We truly have been blessed beyond anything I could have imagined.  Stay tuned for an open house/Maggie's bday party some time this summer!









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!