I’m Bored, America…But I’m not sick.

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America, I’m bored. I miss the people. This is craziness.

We’ve been inside now for 7 weeks, because Gavin is in that vulnerable population.  Which means that the rest of the family has to be extra careful what we bring home.  The house feels pretty small.  We’ve tried to do some crazy things:  We’ve dressed up for no reason, we’ve had family game night, we’ve played video games, we’ve built forts, we’ve watched ALL THE SHOWS, we’ve read books, we’ve shared all the memes, We’ve done puzzles, we’ve home-schooled our brains out, we’ve ordered delivery, we’ve delivered items to church members without hugs (so sad), we’ve cooked so many meals, and you know what?????….

WE AREN’T SICK!  And that’s the point my friends. Isolation-social distancing is boring, but it saves lives.  This is me reminding myself that this is for our own good.  The prediction models for the remainder of this wave of the pandemic show that the social distancing practices in place have been working: https://covid19.healthdata.org/united-states-of-america.

Unfortunately, the virus is deadly, that really saddens me and by now I would be shocked if there is someone out there who doesn’t know anyone who has been sick.   COVID-19 kills 3.4% of those infected.  The number of deaths from flu each year is between 291,000-646,000 As of yesterday COVID-19 has already caused 217,674 deaths world wide. That’s a lot of death in a short amount of time.   However, because the world has acted like they should, and stayed home, the deaths are less than originally predicted.  I am thankful for that.

This virus scares me, I am afraid for the life of my child, and others that I love. I know that I’m not alone in that feeling.  What also scares me is those who still aren’t understanding that this is not a quick event, people who have openly protested against the lock-downs, or people who just ignore all of the precautions.  I’m pleading for these individuals to listen.  On behalf of my child, and many others who cannot stand up for themselves, please stay home and keep your distance.  Please be kind to others.  If I’m not careful I will begin to focus too much on the scary stuff.

There is good out there.  I am thankful for every medical professional who is fighting the virus, even at their own peril.  Thank you.  I am thankful for the ministry of friendship that I’ve seen and experienced through phone calls, video chats, and even the “drive by” visits.  I’m grateful for the organizations that are still functioning to make sure that every one has access to food, shelter, and medical care.  I’m thankful for the teachers who are making this work.  I’m thankful for anyone who is doing their jobs to make our country run, and doing so safely.  I am glad to see us coming together as human beings to fight this unseen attacker.  

I’m thankful for you, America.  I’m praying for you.  We ARE all in this together.  Let us continue to love one another.  

COVID-19 and Special Needs Concerns

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Well…. it’s been quite a beginning to this new year.  It started (at least with me) with rumors of a fast spreading virus that was new and could hurt many people.  In china, however it seemed too far from us.  As if we would be untouchable by any of that. I mean, SARS didn’t cause the pandemic they thought it would in the states, and Ebola didn’t touch us as horribly as it did in Africa.  BUT I also knew that those were not as easily spread or as sneaky as COVID-19, I guess I was hoping for the best.  Now I sit in front of my computer, while our county is under stay at home orders due to this unseen, silent, invader.  Schools have been cancelled state wide until May 1, but I really don’t think that is long enough.

I worked (briefly) in Emergency Disaster Services and one of the things that was discussed and drilled was a response to a pandemic.  At the time I did a lot of studying of previous World-wide pandemics and found it to be both fascinating and frightening.  Frightening because such a microscopic organism has the ability to take down entire civilizations.  Just ask the Mayans about Smallpox, Measles and Influenza- it is estimated that 90% of the population was eliminated by disease accidentally introduced to them by the Spanish.  The 1918 Spanish flu pandemic killed an estimated 50 million people world wide. Over 600, 000 Americans died because of that disease.  I found it fascinating because there are massed graves in parts of the US that have been mostly forgotten. Because no one wants to remember something so horrible that killed whole families and decimated communities, they would rather move forward, so relieved when it’s finally over.

Even if it’s tough to think about past pandemics, largely because it is sad and we have little control over a new disease that we have no immunity to fight, we MUST remember.  As we are seeing right now, even with all our amazing technology, we are still just as vulnerable as those in 1918 and all earlier pandemics.  And the spread of disease is even easier today with all the fast methods of travel we have at our disposal.  Our technology can be both our savior and a huge problem in slowing the spread of COVD-19.  I don’t believe our Governor is acting fast enough in Florida, and I fear what has happened in New York could easily happen here if we do not lock down the state soon.  I know it’s a difficult balance between economy and health safety, but I think lives matter more than money.  That’s my opinion- and it’s okay if you disagree- we are allowed to.  I know most of my concern comes from protecting Gavin.  Those with Prader-Willi Syndrome are in danger of serious illness because of many factors, and it frightens me.  Because I don’t believe it is a matter of IF our family catches this virus, I believe it’s a matter of WHEN.

If thousands of people have Coronavirus at the same time, in the same place, because isolation orders were not given, you will have a lot more deaths, and high risk population deaths will sky rocket. That’s really what “flattening the curve” is about.  We want to be sure that the timing of those needing hospitalization is spread out more evenly so that the health care system is not overwhelmed- so that they don’t have to make the horrific decision that some places are having to make- who gets lifesaving interventions and who dies.  The state of Florida is home to HUGE populations of retirees- who are all at risk of serious illness from COVID-19.   This is the stuff of nightmares.   Having someone who is high risk in my household is making this time more stressful.

Every time we have to leave the house, we are taking the chance of being exposed and possibly bringing the virus back to our home, back to Gavin.  It scares me, more than I can express.  We have to leave for some things, groceries, our job, etc.  We try to avoid as many people as possible, I am amazed at the number of people who just don’t take this seriously- especially  Young people, who as we have seen are NOT immune, and also could end up needing to be hospitalized.

I believe a State “lock down” should be enforced because it forces those individuals who are not taking precautions into isolation-Basically it protects those of us who are being careful, from those who aren’t.  AND even if it’s only for a couple of weeks it WILL save thousands of lives.

  Again, look at history: In 1918, the states/cities that took precautions early, had less deaths than the ones that did not.

For those of us with special needs/High risk family members, this is a very SCARY time.  Not only does Gavin not understand fully what is happening in the outside world, but He is in danger of not being able to access the Health care he will desperately need if the hospitals become overwhelmed.  There are Many other families out there with this same problem.  Please think about others during this time, and isolate out of respect of those who need your help.

I am praying.  I am praying that our Governor will step up and place stronger restrictions over our state during this time.  I am praying for everyone who could possibly be suffer from more severe illness, and I am praying for their families whom I know right now are afraid.  Fear is a real- but So is Faith.  This one way ticket to crazy-town thing that is happening right now, is super scary.  We have NEVER in our lifetime or our parents life time lived through anything like this.  It causes much fear and anxiety.  We MUST listen to the advice of medical experts and do our part to slow the spread, but we must ALSO pray and listen to the world of God.  He cares for us and listens to us when we cry to him:

Isaiah 43:1-2

“But now, this is what the Lord says- he who created you, O Jacob, he who formed you, O Israel:  “fear not for I have redeemed you; I have summoned you by name; you are mine.  When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.”

God is with us, I have faith in that.  I find comfort in that.  I AM trusting in God’s protection.

HOWEVER, Faith does not equal carelessness.  Let us be smart, be safe, PRAY FOR OUR WORLD, and flatten the curve for the safety of us all and especially those who are High Risk.  Love you all.  Praying- always praying.

-Jenn

 

“If we can help, let us know.”

The above phrase is something that we all say to those who are hurting or in need.  I believe we mean it when we say it.  I believe that it is appreciated by those who hear it (it is by me at least).  I also believe that when it’s said to us, too often we never ask for that help.

Asking for help has ALWAYS been hard for me.  Deep in my being there is some crazy need to show that I am somehow stronger than I appear, and that I have it all together (I’m not and I don’t.).  Asking for prayer is easy, but asking for practical help is SO NOT!  BUT we need to accept it when offered.

We wanted to be upfront from the beginning about why we needed to step out of Officership.  We feel it’s important to have the support of our friends and family during this difficult time.  And it is a roller coaster of emotion that I didn’t want to get on!  Thank you all for your kind words in and prayers- truly means more than you’ll ever know.  (I’m not crying, you’re crying!)

Since some folks have asked us to let them know what we need, we decided to put the needs out where everyone can see them.  If you can help, we will humbly and gratefully, accept.  We are grateful for everyone who has reached out-Thank you.

So, here is the list of the Jones family needs big and small:

(we ask for your prayers over this list)

The BIG over-arching needs:

Employment for Patrick:  Please ask, a resume can be sent (we are not set on a certain location)

A vehicle for our family

A home

The smaller:

A living room set

A dining room set

2 twin beds for boys

1 bed for the parents of those boys

Dressers and bedside tables

Bed linens for all

Kitchen utensils (measuring cups/spoons, mixing bowls, knives etc)

Silverware

Pots and pans

Cookie Sheets/ cake pans

Crock pot

Trash cans

Bath Towels

Toothbrush holders

Bathroom rugs

Broom/mop/bucket/other cleaning tools

Where ever we land:  Fridge, washer and dryer, etc.

We own a kitchen mixer,  plates and cups, coffee maker, vacuum, and waffle maker (a must in our house).  🙂

Our current address is:

7854 40th Terrace North St. Petersburg, FL 33709

My number is 727 463-1360

A million thanks!  We are trusting God and know that he has already made a way.

Love,

Team Jones

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When God says “Change your Plans!”

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Dear Friends,

Most of you know what we do for a living.  If you don’t, we are Salvation Army Officers.  Which means we have decided to serve others and teach them about Jesus, through working for The Salvation Army- full time.  The “Army” decides where they think we fit best, and assigns us to run it’s programs in that city.  We are in charge of Church services, fundraising, social service programs, and are the representation of The Salvation Army where ever they place us. Just like a parsonage at a church, The Army owns the house we live in- including furniture and car.  We move our family where they tell us to go, and we stay there until they move us again (about every 3-5 years).    We work serve as a couple, and surprisingly (only God can do this) we enjoy working together.    We’ve been doing this for over a decade now, and I’ve worked for The Army in one capacity or another for the past 21 years (what?!).   This is more than a calling, it’s a lifestyle.  We have had 4 appointments where we ate, slept, and breathed The Salvation Army, 24/7.  We have been a part of some wonderful communities that we will be forever thankful for the opportunity to have known and loved.  We also have a Gavin.  Having a child with special needs is also a lifestyle.  Prader-Willi Syndrome permeates everything we do.  We’ve done our best to marry PWS and The Army, but as Gavin has gotten older and presented more challenges, it’s gotten harder and harder to make things work.

Over the last few years, Gavin’s needs have become too great for us to be the kind of officers we want to be.  It takes a lot  to be a special need parent, and it takes a lot to be an officer, but there is only so much of us to go around.   We asked for an appointment with less responsibility and that’s how we ended up in St. Pete, an amazing command with lots of great people and things going on.  We’ve had wonderful help, We are in the ideal situation, appointment-wise, but even here Gavin’s condition makes it hard to keep our heads above water.   We have had many discussions, and said many prayers seeking God’s guidance.  Both of us have come to the conclusion that God is leading us to focus more on the health and stability of Gavin.  So, when June moves happen, we will be stepping down.   This was not part of our plans, but I do believe God is at work in this.

Our goal is for me to stay home and get Gavin to doctors and therapies and for Patrick to work.  Hopefully we can put down roots and build a stable foundation for both of our kids in a community where they can grow up.  Hopefully Gavin will feel less anxiety about changes in schedules, mommy and daddy going on trips,  and we can get some concentrated therapies to correct some problem behaviors.

This has been an extremely hard, gut-wrenching decision because we love what we do (I’ve cried more than I care to share).  We looked at this from as many angles as we can think of: We know that Gavin’s needs aren’t going to become less and neither is the work that The Army asks of us.  We never want to neglect our duties as Officers or as Parents-It’s not fair to let either of those slip. God gave us Gavin and he needs to be top priority right now.

So what now? What do you do when God is leading you to a completely different path after 10 years?   Well, we need to pray and make some big decisions.  Patrick will begin looking for work, and we will decide where to live.  It’s really a scary leap of faith to leave The Army because we don’t own cars, or a house, or furniture, or housewares… (YIKES!)

We have been looking towards the Pittsburgh area because we’d be closer to family and there is a great PWS clinic there.  But really, we will go where God provides employment.  I become more confident of this decision every day, I’m still a long way from settled (hello no car) but I am beginning to feel at peace. Songs speak to me, here is the one circling around in my head lately:

“God will make a way where there is no other way, He works in ways we cannot see, He will make a way for me. He will be my guide, hold me closely to His side, He will make a way, He will make a way. ”

We ask for your prayers and support as we move forward in faith.

With Love,

Patrick, Jenn, Gavin, & Colin

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PWS. The Good, the Bad, and the Hungry

Prader-Willi Syndrome (PWS) was a curve ball that I wasn’t expecting.  As soon as we got the diagnosis, we began to research this rare syndrome.   I understood that he would be constantly hungry and would eat non stop, even to the point of death, if allowed.  I understood that he would also need a very strict diet because he could gain weight very quickly, and become morbidly obese at a young age.  That he would need speech, physical, and occupational therapies.  Got it- O.K.   All of the above mentioned were focused on by doctors, the things that we were told about the most, the focus of all the scary articles we read.  I felt ready for these things….

I was NOT ready for the anxiety, the obsessiveness, the skin picking, the ADHD, the breakdowns, the destruction of toys and anything he can get his hands on, the danger of him possibly harming himself without meaning to,  and the urinating and other things in places other than the toilet when he feels out of control.  I was not prepared for this!  In fact I feel completely blindsided by these behaviors.  They seem to overshadow the “food thing” sometimes.

It also feels like Gavin finds new ways to destroy things and hurt himself in the process.  Earlier this year he began playing with light bulbs that he could get to.  So we removed lamps from his room.  Our evil genius moved his bed to the center of the room so that he could reach the light bulbs in the overhead fan.  REALLY?!?!?!?!?!  He crushes them and cuts himself in the process.  Gavin is 13 now, I really thought I’d be done with cleaning up urine from odd places by now, but I still find myself cleaning carpets and throwing away toys.  It’s quite frustrating to say the least.

What we have resorted to now is cameras in his room so that there is no chance to do these things in secret.  I know this means he loses all privacy, but he has proven that we cannot allow him that luxury.  It really is for his own safety.  My biggest fear right now is that he will break something, cut himself badly, and bleed to death.  I know how alarmist that sounds, but as his mother it is my job to keep him safe.  And if nothing else, at least we will know if he pees on the floor and we can clean it up quickly as apposed to smelling it 3-4 days later…. Yeah, that happens.

Perfect room for Gavin:  hardwood floors  (carpet is the devil), Non textured/easy clean walls, sturdy furniture secured to the wall, unbreakable picture frames,  Cameras covering all angles, and 10 foot ceiling with recessed lighting.  Basically a safe room.  I never thought it would be this hard.  I cant catch everything, it is exhausting to try.  If I could get a TSA X-ray scanner like they have at the airport, at least it would tell me if he has anything in his pockets.  You think I’m kidding, I’m not. It really hurts me when Gavin acts out.  He cannot tell me why he does these things and I can’t pinpoint any triggers.  The not knowing is the most frustrating part of all.  If I knew what was causing it, I could fix it. I just don’t want him to harm himself.

I don’t want to end this post on a sad note. I love this boy.  There are times when Gavin is SO wonderful.  His smile is contagious.  His facial expressions are hilarious.  He can be very funny when he wants to be.  He also will melt your heart with hugs and “I love you”.   God created Gavin with the ability to show love and friendship to everyone.  It is amazing to watch sometimes.  Parenting is complicated an messy.  When your children are born a piece of your heart leaves your body and stays with them.  He is still my baby; He always will be. ❤

Gman

Prader-Willi Syndrome, the disgusting truth. (Warning: gross post).

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I was going to write a happy post, but the morning has turned foul. As I write this, I am listening to the sounds of my special needs son cry while showering.  I am currently so angry, I could spit nails.  Why is he crying?  Because he got into trouble for pooping in the shower and not saying anything about it until I found it this morning.  He then said he just had to go so badly, that he couldn’t wait.  This is a lie,  and it only makes me more angry.  I wish I could tell you that this was the first time that something like this has happened, but it isn’t.  Too many times, more than I would ever care to share, I have had to clean up a mess of excrement. It is beyond gross and I’m so over it.   I also wish I could tell you that Gavin will grow out of it, but I think that ship has sailed and I have been told by other PWS parents that their adult children still have this issue.

I’m wrecked.  No amount of yelling or punishment will work, he doesn’t really remember and it doesn’t correct the behavior EVEN positive reinforcement has failed us.  Right now I’m not asking for solutions, I’m just needing to get this out of my head.  He does this more often with stress and a strange schedule.  Christmas has been insane, I thought we were doing a fairly good job of keeping the kids on a schedule, but then this happens.  Plus we are about to be on Christmas break from school which adds to his anxiety.  I cannot win.

Right now I feel gross, angry, and overwhelmed.  I’m glad there is school today because I need a break from him.  I’m broken, y’all. This is not how I needed to start my day.

I wish I had a positive thing to end on, but this morning, I just don’t.

To the parents of special needs kiddos: Holiday edition

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It’s the most wonderful (and frustrating) time of the year. I love the Holiday season.  Every fiber of my being enjoys all this time of year has to offer.  From Halloween to New Year’s Day,  I want  to soak up all the festive fun!

However:  sometimes Holidays can be terrifying for the parent of a special needs kid.   Holidays mean a change.  Schedules, menus, and even environments can and will be different than what our kids are used to.  Change can be bad news for kids who have any problems adjusting to it.  Sudden change is the worst, but sometimes even when the change is announced well ahead of time, it can still lead to a meltdown.

Example:  G’s class Christmas party elementary school (I forget the grade).  We knew a month in advance that the party day was happening.  When the day arrived,  he had a fit over the food.  It was so bad that for the next party, I chose to pick him up early so that it didn’t happen again.  It was just too much for him that year.

With Prader-Willi Syndrome we have to try and navigate through all the food related  events while keeping G on his calorie goal and safe from potential dietary land mines.  Not to mention the extra trips, parties at every turn, and extra events.  It is exhausting.

So what can we do?  Well… the only thing I can think of is to 😭 cry.

No, unless you need a good cry (sometimes we all do), I think the best approach to this time of year is to take time for yourself.  (Gasp!) “what did she say?!”  Yup friends, you need some time for just you.  I know that this time of year is crazy busy, but if you look really hard at your schedule, you can find even a small amount of time to get away from your kids.  This is important all year long (for all parents), but even more so during the crazy Holiday season. I’m not suggesting that ANYONE stop fulfilling their obligations, don’t hear what I’m Not saying, I’m simply reminding you that you can find time to relieve the stress.  Maybe you leave work early and have a cup of coffee in quiet before school lets out.  Eat that piece of cake, while locked in the pantry! Put the kids to bed a little early and then pursue a hobby that you’ve been neglecting. Buy yourself a massage (merry Christmas to you!).

My point is this: you do all you can do to make all Holidays nice for your kids, and even then you can’t avoid everything that might cause a breakdown for your special need kiddo, but you can manage your stress level.  As we all know, a calm and rested parent, makes our kids calmer.

If nobody else does, I’m giving you permission to find time for you.  You do have time, you really do!  I promise.

I can’t  control how my son is going to react when inevitable change comes his way.  I know that sooner or later, G is going to have a Holiday meltdown.  I am going to try my best to make sure that I am in the best frame of mind to handle Him, when it hits.

So have yourself a less stressful little Christmas, 🎄 Take some time for you!  From now on (til Jan 1) many Holidays you will go through….

Keep it real, friends. I wish you all find a babysitter for one night this season!  Praying we all find time!

Raising respectful Men in a world that disrespects Women in ministry

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This post is a detour from what I normally write about, but I cannot stay silent.  John MacArthur and several other men made some very degrading remarks about women in ministry, and specifically Beth Moore. MacArthur was casting a broader net however, and disregarding the call of God on the lives of ALL women ministers.   When asked  what word he associated with Beth Moore , he stated “Go Home”, to which the crowd gathered applauded and laughed.  He then went on to say that scripture leaves no room for women preachers, “period, end of story.” 

I guess Mr. MacArthur’s bible left out Deborah, Miriam, Huldah, Lydia, and Phoebe just to name a few.  It must only include the first letter to Timothy, where Paul, not God, states that he does not allow women to lead men.  I suppose that no account for cultural context of this letter to Timothy has been taken as well.  That is a shame.

  I will “Go Home” as MacArthur wishes, but I will continue to preach the truth about God’s use of the “whosoever”.    I’ve come to the conclusion that if we are to end Misogynist attitudes in the church/world, we must start with our own children.  I’ll go home, John, but you won’t like the results.

 

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I have two sons, they are extremely cute and they love their Mommy (as it should be).  I am also an ordained minister, and I submit to God’s will in my life. Our kids accompany us in our ministry, they see what we do, they are involved.  They understand that Mommy and Daddy work for God.   Loving my boys, it pains me to think that they could ever grow up to have such a horrific attitude towards their mother leading a church as I heard this past week.

My nine year old son and I had a discussion about religion in the car this past week, he actually brought it up.  We talked about the fact that there are other religions in the world and different churches in Christianity. Then I told him that some churches don’t allow women to preach or lead like Mommy does.  My brilliant and sensitive (no bias), nine year old was shocked:  “What? Why?!”  I explained  where in the bible that came from and the culture of the biblical times.  I gave him a very brief, kid friendly, version of women’s rights.  It’s a lot for him to take in, he was silent for a bit then simply said:  “That’s crazy, that’s not what Jesus would want.”  Yes, you’re correct, buddy.

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All my life I’ve been raised in a church that has encouraged women preaching and teaching from it’s very foundation.  It wasn’t until I was a young adult that I faced a man who told me that I was not worthy to minister.  It was disheartening, and it wasn’t the last time I heard this,  but I knew my God and the call on my life did not diminish simply because of this put-down.  I was ordained and commissioned as a single woman.  I faced the world in full confidence that God wanted to use my life in this way.  5 years later,   My husband and I began work together in ministry, he has never made me feel less than equal with him on leading the church.  In fact I consider my husband to be my biggest cheerleader in regards to my leadership in our church.

Our children are going to hear all kinds of things in this world, sooner or later.  What are we teaching them at home?  My first and most important congregation eats at my breakfast table.  It is a huge responsibility to raise young men to be respectful of women in ALL categories.  It starts at home.  John MacArthur believes strongly in scripture, so do I:

Proverbs 22:6 “train a child in the way he should go, and when he is old he will not turn from it.”

Train a child- I believe a LOT of bad training has been going on for many generations.  We cannot go back in time and change the way MacArthur and others have been raised, but we can fix the future.  Parents/care givers- what you say to children will shape their thinking about all people.  I am not perfect, and have made mistakes, but I promise you dear reader, that I will strive to teach my boys to love, respect, and care for ALL people.  I will do my best to make sure they understand that a prejudice or Misogynistic remark is still that,even when cloaked in scripture.  I will do this not only with my own children, but with any child that I am privileged to know.    We will not stand by and remain silent when this world presents abuse, rape, hate crimes, and many other sinful events.  Our children will be taught that these things are wrong and hopefully they will be different than the generations before them.  My prayer is that they will know scripture and understand it better than the men and women who twist it for their own gratification.  We will change the world.

Ladies, we stand on the shoulders of our sisters who have gone before us.  So many people have come to know Christ through the preaching and teaching of those Godly women.  We are blessed by their progress, but as we have heard this past week, we still have work to do.  Keep preaching sisters, Keep following the call of Jesus in your lives.  Remember that God will not abandon us, the way may be tough, but we will not be alone.  Let us speak the truth in Love.

Don’t Blink!

Gavin will be 12 years old this month.  TW-EL-VE!!  It’s insane.  I don’t feel old enough to have a twelve year old (she said, even though her bones crack every time she stands up).  The time does pass so quickly.

Recently we’ve been watching home movies of our boys.  Gavin’s movies in particular are mind blowing.  Even though I was there, and lived through every hard earned milestone, I forgot just how difficult his first few years of life were.  Watching the films brought two things to mind:

  1.  I saw how desperate I was for my baby to respond to me.  I was constantly talking any time we had the tape rolling.  I was calling his name, asking him questions, encouraging him to reach/move/smile.   You can feel the desperation in my voice.  I had no idea I sounded like that back then.  It is difficult for me to watch Gavin laying still like a rag doll, and me pleading with him to give a response.  He did respond, but it was so subtle, you would miss it if you didn’t know what to look for
  2. I should never take for granted how far he has come.  It is a miracle.  Honestly-The difference in him is amazing.  We didn’t know if he’d ever walk or talk, let alone ride a bike!  It’s humbling, and it was a good reminder to be thankful for where he is-especially when Gavin throws us a particularly difficult day.

I recently traveled to Israel.  When we went to see the remains of Pools of Bethesda (read John 5:1-15), I was really overwhelmed by the fact that Jesus healed this man with just a word.  Made new, as if he never was lame.  What a gift!  I cried, I prayed, I begged, and I felt ashamed for feeling so desperate.

I know beyond a shadow of a doubt that if God wants to heal Gavin completely, he can.  I think for some time I’ve been struggling with Gavin not being “totally healed”.  If I look into my heart, deep in the places that I don’t normally like to look, I know the desire to have Gavin spared from PWS completely is alive and kicking.  What mother wouldn’t want that for their child?  So, how do I reconcile my desire with the path God has for our family?

Good question….

My thought on the matter is that I cannot allow my desire to turn to disappointment and then bitterness.  Sometimes the answer is no.  That is a fact.  I don’t know if “no” is a permenant reality for us, but it seems to be the answer for right now.  Okay.  That is hard, and makes me sad- which is STILL okay.  Sometimes the outcome of prayer will make you feel sad/angry.   That doesn’t mean that God doesn’t love us, or that he doesn’t want the best for us, he does.  It doesn’t mean that I can’t feel all the feels, or allow myself to grieve some, And it does NOT mean that I don’t have enough faith.

It does mean that I don’t see the bigger picture.  It does mean that I can be honest with God and tell him I don’t like it, and that I don’t understand.  It means that I can lean on him more.  It means that I need to submit to his will, come what may.  I don’t want to be bitter though- that will only hurt me.  Trust me, I am a worse case scenario thinker.  Probably one of my greatest weaknesses.  If I didn’t know Jesus, I would be hopeless.

Que music:

“I believe in the word of God, I believe in the word of God.  Every promise is true, I believe it, do you? I believe in the word of God.” 

God promised to be with me, He promised to hold me, to cover me with his love, He promised to fight for me, and He promised he would never leave me.  These are true.  I believe it.

God did not cause PWS, the world is not perfect and bad things happen.  God IS with Gavin every step of the way. God will also use Gavin to show the world how awesome He is.   I can still pray for total healing, God is okay with that too, and who knows, maybe one day He will grant it.  It’s not my job to know.  It’s my job to follow and trust.

 

 

Failure and Triumph

Fair warning:  This one is deeply personal.

 

Failure.  That’s a scary word.  When Gavin was born there was so much fear of failure.  Not only of my newly appointed position as “mommy”, but also something had failed in his birth.  We weren’t sure what at that moment, but something was wrong.  They even marked him as “failure to thrive”.  When we found out that his 15th chromosome had failed to fully form, we as parents felt that failure like it was our own.  We couldn’t protect him, and it’s our job to do so.  It was painful.  We both struggled with this devastating news in our own way.  I felt like I had failed.  After all, I made the baby, carried him for 9 months, been solely responsible for eating the right foods, and taking the vitamins that I kept throwing back up.  Surely I had done something wrong (I hadn’t).

There comes a time in any crisis that you have to decide how you are going to handle things.  The way I see it you have three choices:

  1.  You can give up/run away.  (doesn’t work by the way, the problem will find you)
  2. You can continue on the path and just live in anger and bitterness (you’re a mean one Mr. Grinch)
  3. You can pray for help to stand, and then get up and get to work.

Please understand that I am not diminishing the grieving process, because you will and SHOULD grieve a loss or problem, it is important, but you can’t live there forever.  Very early on in Gavin’s life, I had to choose how I would respond to the problems life was handing me.

Gavin_060418_11
About 2 hours old

Our son needed champions, and we both made the unspoken decision that we would be that for him.  He couldn’t do anything for himself and we just got in there, as scared as we were, and instinctively cared for our baby.  I wanted to run the other direction screaming, but that baby needed me.  I think I really made that choice on the third day of Gavin’s life.  Early that morning, I got down on my knees, beside my hospital bed, and pleaded with God to get us through whatever came our way.  We both worked very hard to get Gavin what he needed.

The arrival of a new baby will cause stress in any marriage.  It will bring out all the small annoyances that the couple causes one another and make them seem OVERWHELMING!  When you add to that stress a life changing diagnosis for this newly arrived housemate, my friends, you have a recipe for disaster.  I really wasn’t thinking about Patrick’s needs the way I should have been-I was being selfish.   He wasn’t telling me the way he was feeling and bottled up all that emotion.  Our marriage was really suffering.  We were on a dangerous path that began long before we had thought of having a baby.

To top everything off, when Gavin was three months old,  I took a new job, in a different state.  We moved in shifts: first me, then Patrick brought Gavin down two weeks later, and then Patrick would pack the house and come to be with us about six weeks after that.   How is that for a hot mess?!  The weekend that Patrick brought the baby down to be with me, everything began to crack.  The flood gates broke open the following Monday over the phone and email.  It was bad, really bad.  I couldn’t eat because I was so sick over the state of our relationship.  We were so broken that I wasn’t sure if we could fix it.  I remember desperately praying for guidance and crying until I was too exhausted to sob anymore.

I am rebellious.  If you tell me to stay in the lines, I want to go out side them just to spite you (even if I don’t actually do so, I still want to).  So submitting to God and my husband, as in owning my own stuff, was hard to do.  In that struggle was where I made my choice.  I was going to have to work hard, meet in the middle, and yes-give up my own selfishness.

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So young, so clueless!  

It took a long time to mend our relationship, and it had its ups and downs.  Failure seemed to hang over my head, ready to drop on us at any moment, but we both worked hard towards a thriving marriage. When we stood in front of God and our friends and family 15 years ago, we promised to love and cherish each other for the rest of our lives- no matter what.  We didn’t really understand what that meant until this storm of life threatened everything.  It’s hard work, and there will still be moments of crisis because that’s LIFE! However, when I look back over the last 11 years since we chose to fix what was broken, I can see everything that we would have missed out on if we had let failure in.  We were worth fixing.  We still are.  The day you stop working on your marriage, is the day failure gets a foot hold.

I love my husband, and our marriage is pretty awesome.  I love our kids, and Gavin has taught me so much about God. When crisis comes my way, I hope I’m always brave enough to choose option #3.  It’s the most scary choice you can make, because you’re giving over “control”, but it is TOTALLY WORTH IT!