Seizing My Day

sorry.  I was watching the Brady bunch with my kids this morning!  =)

Everyone has a story.  Here is My story … the one I sort of mention sometimes…

the “one day I will tell you my story “…  that story  … Here it is folks!

There are 2 ways to tell a personal story… be practical … or be emotional.  I am attempting to be practical, maybe a little humor and probably end up emotional  b/c I can not tell my own story without tears.    So get your Kleenex for pity sakes.  =)  and I apologize now for the length… I can NOT reveal 10 years of medical stress in a short post.   Bear with me if you will  or just go straight to the bottom tell me I am a lunatic thinking anyone wants to read all this and come back tomorrow for pie.

First ~ Blogging ~ 6 months into being blessed beyond belief in this land of blog by amazing courageous women who share their stories… 6 months into what I thought would be a fun world to play in… has become a world of friendship, encouragement, inspiration and even the start of some healing for me… unexpected beauty I didn’t even realize I needed! you all Bless My Socks off!  So…6 months into blogging I am going to lay it all out here … I am going to give you the Story behind the Seizing My Day Jenn and hope y’all don’t flee from this girls blog… b/c I love y’all too much!
Over the years… I have tried NOT to let our “issues” define me…. I do smile daily, I laugh daily, I enjoy life daily.… ( I also whine daily, complain daily, have normal mom frustrations daily, etc. etc. ha ha)   I am just a girl ~ a girl who loves God ~ a girl with a wonderful husband and 2 fabulous kids  ~ I am a girl who loves friends and coffee and camping and the beach … The Truth is I am a girl with a story that does define her even though I try to not let it ~ a story that is not over yet.

1st A little ditty about me… I am a girl who accepted Jesus into her heart at age 20…(cough …19 years ago…cough) whose heart used to seek God in everything she did… I am girl who accepted God’s love for her and God’s plan for her life… she was excited about God all the time… she loved God and surrendered herself to  God.  He lived in her heart and through her life by his  Spirit.  I am a girl who soaked up the word of God and allowed Him to move freely in her (well… ok…  don’t get me wrong I am not perfect… but that is where my heart was on a regular basis)  =)

Then this girl met a boy …the boy and girl feel in love… after a lovely summer romance the girl made arrangements to move closer to the boys  in Canada 4 hours away… the boy and girl knew they were heading towards marriage… then the boy was diagnosed with cancer… yikes… radical surgeries took place to save the boy… the girl moved to the boys country and went through this with the boy… a year later the girl and boy were married.   they were happy.  a year later the girl got pregnant and really sick… while the girl was feeling miserable every day with a baby growing insider her… the girls mom was diagnosed with aggressive cancer… the girls heart broke… the girl got to see her mom a little during this time… not as much as she wanted … the girl had a beautiful baby girl … shortly after the beautiful baby was born the boy’s cancer returned… the girl with a newborn baby had a mom and husband with cancer .  the girl was strong.  the boy was strong.  the girl and boy trusted God.  the boys cancer was surgically removed again.  They cried and laughed their way through it again.

but then the girls mom died when the girls baby was 4 months old.  the girl was very very sad.  the girl loved God and trusted him.  the girl found peace.  the girl was sad but chose to enjoy the memories of her mom and continue surrendering her life to God and his plan.  The girl knew in her heart to give thanks in all circumstances.   In all things by prayer and petition with thanksgiving she gave her heart to God and found peace.  Philippians 2:14 and Ephesians 5:20 and Colossians 2:6-7  were verses the girl clung to!  Please take a few moments to read those if you have a bible!  =)  Those verses reminded me to Trust God in All Circumstances… those verses reminded me to be Thankful in all circumstances… those verses reminded me to keep my eyes and heart on God’s plan for our life.

Another year later the girl got pregnant and sick again.  the girl loved on her growing baby girl while feeling sick and enjoyed life despite the nausea for 9 months.  the girl had a beautiful baby boy.  the girl named her boy Samuel after 8 days of crying and begging for the boys name to be Sammy.  =) shameful girl!  =)  Funny enough … now the girl sees irony in naming her boy Samuel.  =)

6 weeks into the baby boy’s life his eyes started flicking back and forth rapidly.  the girl and boy worried and took him to doctors.  the doctors could not figure out why the baby’s eyes were moving.  the baby boy had Nystagmus (wobbly eyes).  the girl noticed the baby also choked on milk every time he drank from the mommy.  the doctor reassured her regularly that it was nothing.  the other doctors also told her that there could be a brain tumor or someting with the baby boy but the boy would not get an MRI until he was 2 years old.  WHAT?!!  the girl was emotional, worried, angry.  soon the girl realized her baby could not see her from the other side of the room.  the baby could only see her from close up.  soon the girl realized her baby was not meeting milestones either.  He was a cute rolly polly chubby baby who was happy most of the time.  he gave everyone joy.  the baby saw many many doctors and nobody understood why the baby had low muscle tone, woke every 2 hours at night, and had nystagmus (wobbly eyes) and low vision. the baby was puzzling doctors.  the waking every 2 hours was emotionally and physically draining to the boy and girl.  who also had a beautiful happy busy little girl to love and play with.  the girl and boy learned to live around the baby’s mystery “issues” and coped with severe lack of sleep and WAY too much stress.  They laughed, they lived, they tried to be normal and enjoy life.  they tried to surrender to God.  they tried to see him in the midst.  they tried to trust God’s plan. God was revealing himself during this time.  The girl again remembered that in ALL things to give thanks, to praying without ceasing, to trust God, to cling to Him who had a perfect plan for them.  while others talked about healing and told her they were praying for healing… God revealed to the girl that He wanted her to be content with HIS plan…to surrender the baby Sammy to Him.. to love the baby just as he was.  she choose to walk a path in life God choose with the baby as he was.  being thankful for this baby… just as he was.  not wishing for a baby she didn’t get… but enjoying the baby she had.  knowing the baby would show her and the boy a life they would have never otherwise known.  with unexpected blessings along side the steep path they traveled.  she would learn things that she would not have otherwise learned.  the girl trusted reluctantly at this point b/c the girl was weary.  =)  at about 18 months old the baby was still waking at night every 2 hours.  the baby still had low vision and wobbly eyes.  the baby still had low muscle tone and choked on fluids (the girl Finally got doctors to take that seriously at 18 months)  the baby was diagnosed with  aspiration of fluids… fluids were going into the baby’s lungs for 18 months.  lovely.  the girl and boy were barely coping and really weary, stressed, worried and frustrated that there was no label to help them define what they were going through with this beautiful baby.  the baby had seen countless doctors and specialists.

Just when they started to “manage” all the baby’s issues… one day the girl opened a diaper with very very red baby poo.  (sorry ~it was blood)  SCARY.  the girl and boy started on another path of doctors.  the doctors did procedures on the baby, ran many tests and once again could Not figure out what it was.  they found mysterious red patches in baby’s colon that did not fit into current known medical conditions.   Sammy had 5-6 undiagnosed issues for the girl and boy to worry about.  the girl pleaded with the boy to cross borders … and move to her “home” and try to see doctors there.  the girl hoped that going there would be easier to get into doctors.  the girl hoped it would not take 2 years to get the first appointment with a genetics doctor.  the girl hoped to find answers.  by the way the whole 2 years the girl and boy laughed, cried, enjoyed their children and conducted this crazy crazy upside down life with a fairly happy baby and toddler. however peace had slipped away.  Stress and worry consumed the girl.  the girl struggled with no answers.  the girl struggled with other peoples opinions of her life including family, friends and fellow Christians.  the girl constantly felt judged when she was weary, frightened and worried.  the girl had huge fears.  the girl began to build walls.  high beautiful walls. she decorated them to make herself feel better… and she built them to protect her heart and maintain sanity and keep herself from falling apart (even though she was falling apart and many folks around her thought her to be insane and slightly neurotic)  *sigh*  =)

the girl continued to seek God wearily and from a distance.  not wanting to surrender completely.  not wanting to trust completely.  what if….  yes… her mind went “there” often… *sigh*  .. she tried to give this giant burden to her God but she struggled.  wrestled.  she was angry sometimes. she was broken. the girl and boy were coping differently. sometimes it was hard.  but they made it through the hardest of times. laughing and enjoying as much of life as they could around the chaos and uncertainty.

So after the girl and boy moved to the USA.  the girl had to work to immigrate her family. the boy stayed home with the 2 and 4 year olds.  =)  only for 6 months.  the boy embraced cooking, cleaning, playing, baking… super daddy!  the Lord opened doors and showed himself to them ~ sometimes in beautiful and profound ways.  he revealed things to the boy and girl. but the girl kept her heart close to herself… she was very protective and scared of the baby boys future.   the girl worked and found new doctors for the boy.  the girl took the boy to many many doctors.  with NO new answers.  it was a long, hard, rocky, uphill road.  the girl and boy found a church (big church that the girl used to go to a long time ago) the girl and boy tried to fit in and meet new friends but it was hard with so much baggage and being weary and all. but they tried. they went to womens groups and vbs and bible studies. people were overwhelmed with their story. people did not embrace them. they struggled.  but they lived life.  laughing, crying, building memories, seizing their precious days, visiting countless doctors, dealing with unknown medical stress, scared b/c the bleeding was getting worse.  the other issues seemed like nothing now.  all the while they did not find a church family where the whole family found fellowship to encourage them and support them. (sad)

anyway after a year or two of testing in the USA …the baby was a little boy now… the red patches in his colon got bigger… and 6 months later the bleeding got worse..doctors ran more tests… there were veins… varicose veins (bulging veins) that should not be  in the little boys large intestine (colon)  and they were beginning to creep into the small intestines.  the little boy went through another long series of tests looking for reasons (blockage) in his veins.  nothing.  the doctors were puzzled.  the genetics doctors could not figure it out.  the gastrointestinal doctors could not figure it out.  the neurologists couldn’t figure it out.  the ophthalmologist was only concerned with the  eyes.  the peds doctor was fascinated but did not know what to do.  the gastrointestinal doctors “thought” he “might” have weak blood vessels in his GI track (throat down to the bowels)  the girl slowly figured out foods that triggered bleeding.  the girl slowly “managed” the baby boys condition by trial and error and the internet… Praise God for the internet!   the girl is a darn good researcher now . =)  the baby boy was now 4 years old now.  He was cute, smiley, happy, smart, funny, enjoyable… despite all he went through.

here he is with a camera capsule inside his little body and that machine is the recorder. it was a hard day but he got to meet the Mariners and more importantly the Moose!

friends told us he even made tv (the news) but we never saw it… =)

actually he had this camera thing done twice… I think the top one was when he was nearly 5… the Moose one was when he was 3 1/2…???  blurry days!

And his sister was an amazing sweet adorable smart little girl who enjoyed life in the midst of all the chaos and uncertainty around her.  =)

children’s hospitals have playgrounds =)  little blessings. happy girl.

CRAZY times.

by the way.  the waking every 2 hours lasted for 3-4 years.  when we  moved to the USA the doctors found acid reflux… (so simple)  UGH!!  the baby boy slept “better” once the girl took away foods that triggered acid reflux (the reflux meds increased the little boys bleeding… of course!) so we managed it by diet without meds.

oh and at about age 5 we discovered little boys body temp drops “too quickly” … when he … accidentally take a tumble in the ocean… or goes swimming in a cool pool… or when he gets the flu.

The beach is free therapy… peaceful … blissful… where all your worries drift away.. unless your little boy takes a tumble in the ocean…  and his body temp drops … and takes Forever to return to normal.. scary forever!  =)

I am exhausted calling us all the girl and boy and baby and baby’s sister…  =)

are you still here?? =)

I promise as long as I live I will NEVER have another post THIS long.

fast forward to now. today. today we don’t struggle much with bleeding.  it is not gone.  we changed his diet and it is managed… we think.  ??  the blood vessels are likely still there… 3 years later…  today we don’t deal with many medical hiccups.  we don’t want to put him through the test to see where they are anymore… *sigh* today we enjoy life around his low vision and low muscle tone (which we actually think is relaxed tissue connecting his joints… not actually muscles)  today we conduct life pretty close to everyone else around us.  except Sammy does physical things a little different.  he schools a little different.  he sees a little different. and the mommy hides worry.  =)

Sammy is a witty, funny, smart, delightful little boy.  He always has been.  he loves all things little boy.  lego, nerf, pirates, construction, forts, building… and on his softer side animals!  =)  I am blessed beyond belief with children who are happy, delightful, enjoyable, obedient, kind, funny, sweet, smart… I could go on and on.  whiny, selfish, irritating ~ did I say that out loud.  Abby has lived a very crazy life around her brother and all his issues.  She  has excelled in school, gymnastics, soccer, piano.. she has developed good friends, hobbies, a love for animals, reading and writing.  She has developed a few issues of her own too (anxiety) =) partly related to all the “stuff” she has witnessed.  My mom was prone to anxiety, I struggled with it as a kid and adult! and now my little girl struggles with it some.  genetics. =) anyway….

Back to when Sammy was 5 when the bleeding was the worst.  That is the year they discovered the blood vessels covering his entire colon.  that is the year I LOST it they told us they had not ONE case to compare him to.  doctors sent out Sammy’s story to a world wide web for “mystery cases” and only found one teenager with a very mild case of blood vessels… but he did not have all the other issues Sammy has.  We researched a billion  genetic disorders… a few of which he “might” have a unique combination of … we even spoke with and emailed genetics doctors on the East Coast.  Sometimes the genetic disorders found us… but by the time he was 5 our options were exhausted.  we were exhausted. It was hard putting him through all the testing.  SOOOOOO  ……..Though I had a hard time “surrendering” the search b/c I wanted to know exactly HOW to treat Sammy’s medical issues so that he had the best quality of care.  I wanted to know I was protecting him as much as I possibly could.  I didn’t want to give up and regret it later!  But I knew a couple years ago I HAD exhausted the search and God clearly was not going to reveal WHAT Sammy has.  not now anyway.  I have read enough, researched enough, asked the Hard questions and in my mind I face reality.  Reality is ~ IF Sammy does in fact have weak blood vessels ~ one day something might  burst ~ if they are weak and fragile they will be nearly impossible to repair.  One day we may (probably will) face tragedy. that is my reality.  that is what I fear.  that is why I struggle with fear.  that is what drives me to protect my heart.  a heart that was already weary and exhausted.  that is what drives a wedge between me surrendering my little boy to God 100%.  that is what keeps my walls high.  it is way easier to live surface level with most of the people around me.  not that I want to live sobbing all the time.. =)  I don’t want to live waiting for bad things to happen either.  and I don’t.  I am just saying it is really hard to free your heart and mind from said possible (likely) events. I know so many families live with medical conditions… some I know personally … and some I have learned their stories through friends and now even blogs!  some peoples stories seem way worse than ours..  I imagine I feel like the mom of a family who struggles with cystic fibrosis.. where they know one day their child’s lungs could loose the battle.  one day I know my sons blood vessels may loose the battle.   I know I am not alone.  I know God loves me and my family.  God has blessed me with beautiful experiences in the midst.  God has provided for our family.  God has done beautiful things in us, around us and through us.

don’t mind the crazy extended family member in the back!  =)

We have lived back in my home town for 4-5 years.  Building memories.   Enjoying life.  The last couple years have been A LOT less medically challenging ~  HUGE blessing.  We have made good friends.  but we have really struggled finding a church family.  that is another story.  I have learned it is hard to fit a happy but weary family with vision, medical and anxiety issue into a church fellowship.  I have learned it is hard to be in a house of worship without feeling emotional.  I have learned it is hard to “get to know” people.  I have realized if I don’t suck it up and keep my “baggage” closed… people run the other way.  (sad but true)  I have learned that my son with low vision has a hard time staying in kids church or sunday school alone without help.  (I have been to sunday school in the last year but not grown up church)  I have learned my shy daughter with mild anxiety has a hard time going to sunday school too.  I have learned that I don’t get to go to church while trying to find a church body.  I have learned it is exhausting looking for a church with children with special needs.  I have learned I have guarded my heart too much.  I have learned I keep God at a distance now.  I have learned that I need therapy.  =)

OK… 3265 words into my story I need to stop here.  Now I fear hitting publish.   tomorrow my post will be something crafty, something light hearted, something funny, silly, normal, something about my everyday life or an everyday lesson, event or baking… I LOVE baking.  =)  THAT is my every day life.  THIS post is just my Story.  the roots behind this girl who writes Seizing My Day.  I am generally pretty happy.  I have skeletons in my closet.  I have a history of more trials than some will ever face. whatever.  =) I have never taken my eyes off of my Lord.  I have never lost faith.  though I have seriously doubted.  and looked away some.    =)  I have struggled but I have also found joy in my journey.  I have laughed as much as I have cried. Sometimes doctors and nurses probably thought “do they know how serious this is?”  “what is wrong with them… laughing in a hospital like a couple of hyenas.”  =)   God has comforted my stubborn being even when I was not willing to let him hug me.  I have a long way to go baby… but I have come a long way too.  =)  I would love to write out all the verses God has given me over the years… but that would add about 2000 more words to this post! =)  I am just going to list them… and if you feel led to go and read them.. I am sure you can fit them into the context of my story!!  =)

James 1:2, I Peter 1:6-9, Romans 5:2-5, Romans 8:  ,Colossians 4:2, Romans 12:12,  I Thessalonians 5:16, II Thessalonians 3:5, I Timothy 4:4, Romans 15:13,  I Corinthians 16:13-14, II Corinthians 4:8,9 & 16, Philippians 3:12,  Colossians 3:12-17

to name a few   =)  they are all focused on being Thankful in ALL circumstances.  learning from my circumstances. letting God work in the midst of my circumstances. trusting.  choosing to allow the Peace of God to rule in my heart.

I have protected my heart from the peace that comes with trusting.  I am working my way back to what I know, applying what I have learned and REALLY trusting.  REALLY surrendering. REALLY allowing God to Live IN and Through me again.   Some of you all have unknowingly nudged me to open my eyes and see some of the ways I had built walls and protected myself.  I have allowed myself to fall into a place of security without God in the center.  I am seeing that because of blogging =)  and here I thought “I” was handling my life just fine.   =)  oops.  well except for the fact that I knew I need to surrender Sammy to God 100% … how on earth am I going to do that?    =)

enough said for today.

Please do not feel like you should say something to encourage me… =)  not that I will reject it!!  ha ha!  My story is a lot to absorb!  =)   It actually DOES feel FREE to just lay it out here… those life events that have defined me and even held me back a bit.  I didn’t want to slam the blog world with my woes… they really arent’ woes… My hope is maybe just maybe God will use my story in your hearts as he has used some of yours in my heart.  =)

Bless you all for coming and reading to the end!

and I am sorry if you are out of Kleenex!  =)

PS

A mom in my daughters school DID loose a small child unexpectedly last week. It makes me weep when I think of her broken heart.  She is facing something I merely fear.  She needs your prayers today.  =)  She needs my prayers.  My heart is with her this week.  Life is so precious.  Seize your day with your loved ones and make the best of your circumstances.  =)

OH..  and Happy Canada Day to all my Canadian friends!  4149 words. yikes.