Longing to Live

August 12, 2012

So…three weeks ago I almost died.  Yes….it was on a toliet with my head in a trash can….not as lady like as I would have hoped, but a true tale.  That said..that type of situation can be quite an eye opener.  (Oh…and God is using it!  He uses all things for His glory.). Due to my health situation I feel that God has given me quite a few opportunities to reflect on what is important…and remind me that loving Him and loving others is the priority.  Yet, this incident has really caused me to pause and realize that life is short…but His plan is big. His purpose is great….and I want to live it out.  I want to use my energy to love well.  In 1 Peter it talks about being anxious to do God’s will.  I am anxious to do God’s will.  I am here for that purpose.  I am here to love people.  I am not here to be comfortable.  I am not here to be right.  I am not here for my own selfish wants.  I am here to listen, care, give, pour my self out….not in my own power but because of who Christ is and because each of my days, minutes, and seconds belong to Him.

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So…I get a lot of questions such as…”What exactly is wrong with you?”.  This is always meant as a caring, and wanting to understand/sympathize question, but you can probably see why it may not seem like the most caring/sympathetic question.  It truly doesn’t bother me; I understand that chronic illness is confusing and difficult to understand.  It is much easier for people to comprehend diseases/conditions that go away or could go away.  Letting people know that without a significant medical discovery or miracle that this is here until heaven leaves most people pretty uneasy.  It is always hard for me when someone’s face falls when I tell them there is no cure, and we just have to take it day by day.

In order to make it easier for everyone to understand (I may even print this blog out and have it to give to people so I do not have to keep repeating the same tale over and over.)  I have a connective tissue disease called Ehlers-Danlos Syndrome.  This disease basically causes all my tissue to lack collagen.  There are various types of Ehlers.  I did not get the cool kind that could make me a non- chinese acrobat with super flexible joints.  I cannot bend my thumb back to my wrist or fold myself up into a box because my hips are super flexible.  Nope no cool tricks here…instead I have stretchy, velvety soft skin that is irritated by most everything.  Internally this causes my organs not to be held in place very well.  As stretchy as my skin is on the outside…I am even more stretchy inside.  (This sound like it could be interesting…but nope it just equals a lot of surgery!)  My connective tissue is not strong and has allowed most of my important and private abdominal parts to fall.  Gravity is not my friend!  (I guess this means I could be super healthy in space!)  In turn…I think I hate you Ehlers and Danlos!!!!!  Not only are you easily mispronounced….misunderstood…..but you make everything fall to the ground, and I do not like it!
Well here is the real kicker…I am in a rare group of people (not the type of rare or unique you long for) that has severe gastric complications because of my Ehlers-Danlos Syndrome.  In turn, my digestive system has shot craps…not crap which it should shoot.  I have what is called Chronic Pseudo Bowel Obstruction My body basically acts like I have a bowel obstruction all the time, even though there is no mechanical obstruction.  This is caused by lack of coordinated muscle action within my intestines.  So…my bowel actually dilates and fails to work.  In turn, it can not move the food and I end up with a huge plumbing situation.  I basically have clogged pipes.  The other aspect of this disease is that just because the nerves in the intestine do not work correctly, does not mean that they do not misfire and cause spasms and pain.  Oh…that is one thing they do well!  This leaves me with really intense abdominal pain because I have these nerves that just get confused and intestines that are overly sensitive although dysfunctional, which leaves me a little bit of a mess.

So…what does this all mean?

  •  It leaves me on a liquid diet, with little to no fat because that is all my intestines can handle.  (Truly they cannot even handle that!)
  • On a lot of medicine to get as much function from my intestines as possible.
  • Constantly, fighting to avoid malnutrition and the side effects there of.
  • Trying to deal with pain from messed up nerves and overly sensitive intestines
  • Basically needing bowel liquid plumber to keep my “pipes” clean…clogged pipes equal a lot of throwing up.  (This is the reason I normally go on “bowel rest” once a year.  My pipes need to be cleaned out and have time not to work.  This gives them the best shot at working as well as they possibly can.)
  • Fighting the effects of gravity on all my organs.  (In turn, no heavy or really light lifting because my tissue cannot handle the strain.)
  • Dealing with nerve damage to my bladder, which leads to chronic bladder infections.
  • Some more stuff that just gets overwhelming to go into

I hope this is helpful and makes everything a little clearer.  For those who have Ehlers-Danlos Syndrome or Pseudo bowel obstruction… I know it is good to know you are not alone and that others are fighting the good fight as well.  Being “syndromey” is not fun, but it does allow you to see the world in a different way.  It allows you to appreciate the little things.  It gives you a whole different perspective on life.  At the end of the day I know with all my heart that God is using this for His glory…because He uses all things for his glory!  Everyone has their struggles and challenges in life…and Jim and I have this.  It is our choice how we live in the midst of it all!

Ok…my guys are home from Richmond, Virginia.  They were out visiting Jim’s dad and stepmom and brother.  As a bonus his sister and brother-in-law came for a visit as well…so he had some quality time with his family.   (I had to stay home because my immune system is too weak for me to be on a plane right now.  It was so weird not to have them here.  It was way too quiet!)

 

 

So…Anderson had an amazing time on the trip and things went pretty well until the flight this morning.  (I think it may take Jim a few months…years…decades to recover.  He told me we cannot travel on a plane again until Anderson is 12.)  Let’s start by saying they flew on Delta…that should be enough said right there.  (Mottos for Delta Airlines:  “Where customer service goes to die”, “We treat everyone like they do not matter”, “The airline that despises laughter, joys and smiles”)  With all that said thank goodness for two nice flight attendants that made up for terrible ticket and gate agents.  So…Anderson and Jim’s plane left at 6:50a.m. eastern time….so Anderson was truly up way before dawn.  To make matters worst Jim kept his schedule on mountain time so he would readjust easier.  This left Anderson with very little sleep last night and a very early wake-up call.  This is a bad idea for many toddlers, but especially for Anderson who is not a morning child.  Anderson usually sleeps from 7:15-9 or 9:15a.m.    He needs a little bit to wake-up and doesn’t really enjoy an overly busy morning.  (I really believe if coffee was appropriate for 22 month olds….my son would be sitting with a cup of Joe asking me not to speak until he had his first cup.)  In turn, check-in, airport security and a morning plane ride is not quite Anderson’s morning speed and he let Jim know it.  They boarded their flight from Richmond to Cincinnati and Anderson lost his mind.  My sweet little guy with the contagious laugh and smile was replaced by a biting, scratching, screaming maniac.  Nothing would comfort him…nothing would stop him…he was insane.  He bit Jim over 30 times, perfected the back arch, and basically was a holy terror.  Jim looks like he got in a fight with a cat!  Then right at landing he tried to go to sleep.  Jim refused to let this happen…and kept shuffling him from side to side till they could get on the next plane going from Cincinnati to Denver.

Picture this an overly tired 33 yr old…and overly tired nearly two year old dragging themselves, a very large car seat, an overly stuffed diaper bag (if you flown with a child you understand) and a carry on bag (darn you baggage fees!) through the airport to an already boarding flight.  Jim sweating and exhausted drags himself down the jet way….and a conversation something like this goes on.

 

 

Flight Attendant (a.k.a. Pleasant Delta employee): Hello!

 

Jim: You have to help me.  (Jim looks like he just finished a match with a WWE wrestler)

 

FA: OK (Confused…slightly bewildered)

 

Jim:  The gate agent says there are no extra seats…every time there has been extra seats. (Gasp of exasperation!) I need one of those seats… I need you to make this happen.  I will not be able to do this…he (pointing to Anderson) will not be able to do this without a seat.  They are holding the car seat right outside.  Make this happen! (a.k.a.Jim is basically positive of an extra seat because he asked about standby passengers and there were none…and I had purchased a seat on the flight.  Did I mention the earlier flight had extra seats…but no assistance equaled no car seat for Anderson!)  I truly believe if Jim had not gotten a seat for Anderson that him and Anderson would now be living in Cincinnati.)

 

(Magically during this time a bottle of water appears from the finally nice Delta employees.  Well…either they were finally being nice or Jim looked that desperate!)

 

 

FA: I can do this.  (Truly looking at Jim with concern…and worry!)

Jim got Anderson into his car seat and two minutes later Anderson is unconscious.  There is even more to the story…possible chicken poxs, shuttle rides, a doctors visit, the list goes on but this story is already way too long!  All that said they are home.  Jim has some new grey hairs, is very content that we are only able to have one child, has enrolled Anderson in anger management, and truly belives that at some point during the first flight that Anderson’s head spun all the way around!

 

 

 

 

 

 

 

 

 

Not Such A Good Start…

August 5, 2012

Ok…so I decided to start blogging again and then things went awry.  I ended up with another stint in the hospital that included a lot of ups and down.  (Which I will blog more about this week.)  In turn, not such a great start at posting on a regular basis.  So…here I go again.   I am too tired for a long or very interesting post, but at least I am blogging.  

The last three weeks have been physically hard but so emotionally and spiritually uplifting.  I am so thankful for an amazing family, wonderful friends, and most of all for a hope in a living, loving God. 

I always face this dilemma with blogging…should I or should I not. The battle has many elements…knowing what to share or not to share….the fear of narcissism, exhaustion, lack of creativity, etc. In turn, no words are written and time goes by and an outlet that could probably be useful to both myself and my family has become useless.
So….I have decided to stop thinking so much (this could be a huge issue) and just run with it. Creative or not, put together or not, articulate or not, read or not…it doesn’t matter. It is more an unfolding of the good, the bad, the easy and hard. Honestly the ups and downs and the growing while trying to live life with fervor in the midst of chronic illness. Loving God and loving others when things are good, bad or otherwise…and how that unfolds.
So…here I go. A blogging failure of the past…trying once again. My hope is that this will help me to share with Anderson (my precious, stubborn, delightful 22 month old) that life is often tough, but the journey is pretty amazing.

Complaining….

September 1, 2011

So it was one of those really frustrating days.  One of those days when I realized that not driving a car and health stuff can just suck.  (Sorry to those who are offended by that word…but it is fitting!).  I went to get an MRI today.  Even though I am the queen of being poked and prodded ….I was not looking forward to my MRI.  (I am not a big fan of small spaces, especially loud small spaces.)  In turn, I thought about it most of the day and just wanted to get it over with.

Here is the frustrating part…I make Jim rush home from work because of course I cannot drive myself.  He had a crazy busy day so he was rushing and I felt really bad for him.  We throw Anderson in the car, fight traffic and I get to the imaging center.  Jim and I decide because he cannot come in during the test and it is lengthy that he will just drive around with Anderson instead of forcing him to sit in a waiting room that has nothing enjoyable for an 11month old.

So the process begins…of course I have paper work.  (I do not want to know how many trees I have killed with medical paperwork.  I wish I had a medical speed pass that just input everything they needed directly into their computer ) Then I wait….and wait.  Finally, I get called back for an x-ray to make sure I do not have any wire pieces left in my body that the MRI machine could pull out.  (Def. a good thing to know.) I pull on my very flattering X-Large pleated scrub pants and lay on the table.  I am a pro at this!  The tech is super nice.  (He and his friend who will do the MRI are both from Hannibal.  (The Missouri connection was a good thing!)  I get my pics done (I am the Heidi Klum of X-Rays.)  Then more waiting….more waiting…more waiting.  The tech then returns with the bad news that the radiologist left before his shift was over and no one is there to read my x-rays…which will allow to get my MRI.  They called him back in, but they need to take the person after me because they do not know how long it will be for him to return.  So…more waiting….a little anxiety….a lot magazine reading.  (If you need to know what is going on with Gwyneth Paltrow give me a ring….or what eye shadows are hot for fall.)  All the while Anderson is being driven around Denver…thank goodness he was napping.  Awhile later the doc returns and reads my x-rays.  I am cleared for the MRI, but I just keep waiting.  Over an hour later I ask what they think the time frame is.  Come to find out the lady they moved ahead of me…who was supposed to have a 30 min scan, actually has four 25min scans.  It is going to be a least another 30min before they begin my test, which will then take 30-40min.  So after waiting and waiting…and a fair bit of worrying I have to reschedule.  (Dinner and bedtime were calling my son home!)

So…I get to do it all over tomorrow.  The best part is that my test is scheduled for 9p.m. (That is going to be great…Anderson usually goes to bed at 7:30) I know it truly not that big of a deal, and out of everything going on in the world this is no big deal.  I just sometimes get tired of it all…the tests, the hospital stays, the medicine, the tiredness, the lack of independence.  I sometimes just want to get in the car and go for a drive, but that is not my reality.  In turn, I just needed to complain.  Now I can get over my pity party and move on!

Our New Journey

August 26, 2011

Just wanted to share a few pictures from this new journey we are on.  Although the transition is difficult, the Lord truly has met me right where I am.  (He tends to do that!!!) I feel so much peace knowing that the Lord truly has us here.  I am so excited to see how God will choose to use us during our time in Colorado.  Sorry for the PDA picture that is included….but I am so glad that I get to share this adventure with Jim.   We truly are so much better together than apart!  (In turn, I love that pic!!!!) Finally…I included pics of some of Anderson’s firsts…first french fry (Chick-fil-a of course), first time swimming, and little family adventures where we have gotten to enjoy the beauty of where we live!

My son loves the vacuum cleaner.  He chases it around.  He grabs the cord.  He tries to eat the plug.  It makes him squeal.  It makes him scream…with joy!  It makes him laugh!  He also loves to pose with it.  I think he may be the first male Price Is Right model.  He is working on the hand motions to show all the beautiful features of the Dyson.  He even has a special hair do for this new endeavor!

Past Ten Months…

August 4, 2011

I have been meaning to post this blog for almost a month. So…ten and eleven months will come pretty close together…and with how time has flown they feel way too close together.
Month ten has been amazing! Such a month of growth and change. He has just taken off…literally and figuratively. (Moving from St. Louis to Denver has been a huge but exciting change for Anderson, as well as the whole Barnard clan.) Our new place with carpet has made movement for Anderson so much easier. Anderson is pulling up and standing on everything his crib, every chair, walls, my legs, my hair….you get the picture. He is a crazy crawler and climber. The climber part is great developmentally, but not great on a Mom’s heart! (An entire flight of steps in two minutes flat!)
He babbles like mad man, but he has this shy side which causes him to get really quiet and just take it all in. His laugh is contagious and he has started to realize that he is funny and delights himself and his parents by the way he laughs at himself. (He comes by it naturally…his Mom and Dad laugh at themselves all the time!). I also believe willfulness rears its ugly head after month nine. It seems mobility increases and so does self will. Anderson can arch his back with the best of them and he lets me know what he wants and what he doesn’t. Oh…how fun and challenging. (I am sure just a preview of 18yrs to come!) The funny part is now that he has tubes in his ears he yells a lot more. It truthfully is really funny….he yells to show sadness, happiness, and just because he can. I have to admit it is pretty amazing! He is so delighted by the sound of his own voice. We now are working on an inside voice. Finally, he is eating pretty much all table food. He loves it all! (And loves to poop just as much.) This has lead to a major improvement in he spit up ….I thank God for this each day. It is not completely gone, but 90% better. He soon may be able to ditch the bib! Well…those are the basics. I promise to add pics in the next day or so!

A Quick Note…to my favorite little guy (Small, but mighty)
Little man….thank you for such a fun month! I delight in you so much. The last month has been amazing getting to see you grow and change. Watching how beautifully you are designed and made in God’s image….only makes me long to share the Lord with you more and more and to be the spiritual example that God calls me to be. (I know in this I will fail way to often. This will give me the chance to show you the grace that God gives his children.)
Watching your curiosity explode…it such a neat time. It also make me realize how parenting requires a perfect balance of protection and allowing you try things out to see what you can do. This theme will repeat itself so many time in the future…which is both scary and exciting! At times just like now you will fall and cry, but your Dad and I will be there to guide and help you stand up and try again.
Know you are loved, prayed for boldly and you have parents that realize how much God has blessed them with you!!!!

9 months

June 11, 2011

Little man,
You are 9 months today. It was a big day. You pulled up in your crib for the first time today. I came in during your nap and you were standing up with a big smile. Napping just wasn’t the priority. You also crawled like crazy today….you crossed the room to try to chew on the computer cord….I stopped you. (Just wanted to clarify). The best part of the day…you said mama. Your first word….mama! It was wonderful. Your dad didn’t believe me at first….and then you kept saying it (he was just sad you didn’t say dad first). It is the best word I have ever heard. Thanks for the best nine months ever….and one of the busiest but best days of my life.