Saturday, October 30, 2010

Not my plan

As is customary, things are not going according to plan, at least my plan.  I did not want to go through the weekend without getting bmb results but here we are.  No news is, well, no news!  Maybe Monday or maybe I should just stop waiting for things to go according to my plans, what do I know?

I continue to stay busy and actually had a full Friday night and Saturday.  The kids and I have committed to be part of a great service project that the Sullenger's have co ordinated.  They are a young couple whose daughter drowned in a canal this past August.  She was only 2 years old.  This December 17th, she would have celebrated her 3 birthday.  In honor of her, they are planning a service project to put together 200 tote bags for the Primary Children's Medical Center PICU filled with essentials that parents may need if they have  arrived at the unit in an emergency situation.  Their daughter was life flighted and they had little time to prepare for the hospital stay.  These totes will include such things as toiletries, blankets, snacks, journal, etc.  We don't know them personally, but I have followed their blog since the accident.  We have had fun collecting some items, looking for bargains to donate.  That has been nice to work on that this weekend. 

Tonight, our town celebrated Halloween.  My kids were not here for the weekend and rather than sit around alone talking to my dog, I invited some families over for scones and hot chocolate to warm them up after a cold night collecting candy.  It was really fun but I missed my kids.  The house was full of laughter and fun from all the little ones so that was a great way to spend a Saturday and I enjoyed getting things ready for them. 

I did break down this afternoon and used a gift card I received earlier this year at Sage for an hour massage.  My back and neck are still recovering from all the problems they have had the last couple of weeks.  I couldn't even sleep last night for all the pain I was in and nothing was relieving it.  The poor girl who gave me the massage was tired when she was done.  I could feel her hands shaking from trying to work the knots out.  At one point she said, "What do you do for a living, your back is messed up?"  Ha, ha, she could hardly believe I was just a mom! 

Anyways, made it through another day, not quite as crazy as yesterday!

Friday, October 29, 2010

Slowly going crazy

I want to be completely honest...because this blog is all about being honest, the cold, hard, desolate truth of living with chronic illness.  So, as I thought about what the update for today should be, the words of a song I often heard my sister sing, when she is trying to make light of a stressful,crazy situation, came to my mind.  She would always sing it with a smile on her face, trying not to lose her sense of humor in the moment.  Picture me singing this song, still trying to keep my humor intact!!
       I am slowly going crazy
     1,2,3,4,5,6 switch.....
     Crazy going slowly am I    
     6,5,4,3,2,1, switch.....

Still no word from Seattle.  What will truly be hard is if we have to go another weekend not knowing!  Being patient stinks!!!

Tuesday, October 26, 2010

The Nature of God

This has been a challenging week and it's only Tuesday!  This is the week we expect to hear from the Doctor on the bone marrow biopsies.  We could get nothing but good news and that would be wonderful.  I have noticed that the past six months I have been slowly drowning in life, pain and suffering, at times surfacing in a chaotic dog paddle to regroup, gulp some air and begin another decent to the bottom.  All the while, trying to remember that God is in charge and he has a plan for my happiness and the happiness of my children. 

Last year, I became very involved in a book called A Course in Miracles.  I was captivated, mesmerized by what I learned in this very spiritual book though not a book belonging to any religion.  I spent every day, all day at work, plugged in to Itunes so I could listen to 34 podcasts that spoke in depth about the Course. Some I would listen to over and over.  I learned so much.  I was on a spiritual high for months.  I felt invincible.  I felt that no challenge could discourage me from the peace and love of God.  My understanding of the plan of salvation was far reaching.  Looking back, it was as if I was being prepared spiritually for losing my job.  When I lost my job, I had hope and strength, at least once the initial shock wore off.  I used my new found strength in faith to keep me going.  It worked. 

Last night was a tumultuous night.  The kids were quarreling something fierce and I had reached the end of my rope.  The words that were exchanged we biting and bitter, it made me shudder.  They blamed each other for petty things, things that happened ages ago that had nothing to do with what was happening in the moment.  I acknowledged their anger, fear and anxiety over the situation we find ourselves in these days.  I said, "You are all choosing to hold on to hurt and past grievances with each other more than holding on to the peace of God!" Knock it off, is essentially what I told them.                                                                      

It occured to me that pain and suffering is a choice. The nature of God is not that he enjoys seeing us suffer but his plan is for us to be joyous.  Wholly joyous.  Pain and suffering is not part of his plan.  'What?'  You may say...'explain all the suffering on earth then.'  True, bad things happen but we can be in the midst of bad things, even death and still be in a state of peace and joy.  Joy, not as the world defines joy but joy in a knowledge that life is eternal.  It takes a solid, spiritual person to be able to find this remote place in a world of chaos.  It is hard but not impossible.  I'm not sure I will ever be that kind of person that dwells in this place at all times, though I have stumbled upon it for small moments at a time and it is the best place in the world to be.

Today, I am suppose to be working on a couple of projects for people but I have not been able to settle down all morning.  I am tired mostly.  I sit at my computer, ready to work, then see my iPod close by and decide to update my music, I return some random emails, file some papers, text a friend, blog,  find all sorts of distractions to take me from what I should be doing.  As I was surfing through my iTunes music I came across a video podcast from the Course in Miracles, A video I had never seen before.  It was as if I was sent a video message from Heaven!  I again have those feelings of peace I have been searching for, the reminder that whatever this weeks bring, God wants me to be happy, wholly happy and joyful!  This is one quote that comes from the Course in Miracles...This moment of distraction has actually ended up a tender mercy from God, here is part of His message to me this morning....

            "Lay down your arms and come without defense into the quiet place where Heaven's peace holds all things still at last.  Lay down all thoughts of danger and of fear.  Let no attack enter with you.  Lay down the cruel sword of judgement that you hold against your throat and put aside the withering assaults with which you seek to hide your holiness.  Here will you understand there is no pain.  Here does the joy of God belong to you."    The Joy of God Belongs To You!

Sunday, October 24, 2010

While we wait

I am so glad this week flew by.  I dread waiting for test results.  Even when the kids were absolutely stable and 'normal' for them, it was hard to wait.  This time is a bit different of course.  I have really tried to stay busy this week doing a little of everything and a lot of nothing.  I say that because I am seriously tired today but when I look at the week and what I have accomplished, I don't really have much to show for it. 

We should really hold a lottery for stuff like this, the odds of guessing what the outcome will be are about as unlikely as guessing the powerball winner!  When I am having a good day, I convince myself that all the abnormal, dysplastic cells will be gone and we will be back to normal, whatever that has become.  On the days when the kids are having a little more pain and new aches than normal, I am just sure that the marrow will show great declines and that is discouraging.  I wish I could just be neutral but I haven't figured out how to do that yet.  It is the best way to be though, I know that. 

Speaking of aches and pains.  Spencer has been complaining all week of swollen glands that are really sore but no other symptoms to connect to that.  His throat isn't sore as you would expect, just his neck.  He has lots of pain in his joints and a general achiness in his bones but he says it is not like having the flu when you get all achy and feverish.  In fact, he hasn't had a fever. 

This is where the conundrum occurs.  If I take my kids to the doc everytime stuff like this comes up, we would seriously be there several times a week between the three of them.  That seems like paranoid behavior so I take the 'wait and see' approach which comes with it's own hassles.  The kids translate that to mean I don't believe them, care about them or take them seriously.  They begin to lose trust in my efforts as a mom and I begin to lose points towards my dream of being 'Mother of the Year' : )  To appease them, I offer a Tylenol or Advil and hope that somehow they find relief.  That hasn't been working out too well lately, I think they are on to me!  So, what's a mom to do?  It never fails though, when there is nothing I can do to ease the symptoms, I break down and take them in only to hear the provider say, "Well, it's too bad we didn't catch this sooner."  Ughh, my best laid plans foiled again!! 

I need to figure out a better plan of care, they have ganged up on me and tease me using the dog as a their perfect example of 'how I don't care'.  If you read my other blog, you will know that I thought my dog had allergies and just let her suffer with them when in fact she has a very bad heart condition but I didn't know the extent of that because I was too cheap to take her to the vet.  So, they poke at each other when one of them is sick, "Don't worry, mom will take you to the doctor when you are beyond repair and have a couple of months to live!"  It sounds sad and harsh but if you know my kids, they are saying it sarcastically with a great deal of humor and fun and we all end up laughing... til I banish them to their bedrooms!  Just kidding.  It's good for a laugh though!  I don't know what else to do or how to handle it all, chronic illness is still new to me, everyday is a different adventure!  In the meantime, we wait for results of bone marrow biopsies.

Friday, October 22, 2010

Ha Right Plan!

HRP, the acronym which spells out the nuts and bolts of our health insurance plan.  The insurance company tells me that the letters H.R.P stands for High Risk Pool.  They tell me it means that they understand we have exceptionally astronomical healthcare needs and they will be there every step of the way to keep us insured, protected and healthy. 

If you ask me, however, H.R.P really stands for HA...RIGHT...as if we are going to PAY for that!  The real nuts and bolts of the plan are that we pay a small fortune each month and in return for this minor monetary sacrifice, receive in addition to a healthy $6000.00 deductible, a large amount of nothing! 

A couple of days ago, I found myself at the pharmacy with 7 refills.  It would be an understatement to say I left very frustrated, empty handed, because some oaf in the conference room of the insurance company decided to change their policy on the drugs we happen to use.  He probably got a sweet pay raise for this grand idea! They wouldn't pay for the generic any more, or the brand name.  They wanted us to try something else or get a preauthorization from the doctor.  In case you don't know what that translates to, I'll tell you, a large bottle of ibuprofen to take care of the monster headache that ensues not to mention days without important medications causing a laundry list of discomfort for the kids.

As a general rule of thumb, doctors are not accessible and when they do surface, after you have broken through the land mine of secretaries and nurses, usually want to 'see' us before changing the prescription which costs time, money and sometimes a trip out of town.  I did have one of our doctors get back to us within 24 hours which was great!   Ironically, the only drug that would be accepted by the almighty insurance company was one far more expensive than the medication we had already been on for a year!  Where's the common sense in that?  Talk about a healthcare crisis! 

Alas, all is well that ends well.  I finally managed to get all the medications we need and everyone will feel better soon but it's just a hassle I can do without, like parent teacher conference when your 10th grader has 4 'F's because he has missed 4 weeks of school....arg, don't even get me started on that tangent!  Ya know...It's the little things that throw me over the proverbial edge! Sighhhhh.

Tuesday, October 19, 2010

A good omen

This is what the kids refer to as the 'flower of hope'.  It just began growing in between the concrete joints in the backyard.  I didn't plant it, obviously, I have no idea where it came from.  I haven't even watered any of the bushes or grass in more than 6 weeks.  When we went to Seattle in August, everything pretty much got scorched because I wasn't there to water and tend to things so I haven't invested anymore effort into the backyard.  The lilies have faded, the burning bush leaves have about blown away, even the grass where the duck pen use to be is struggling to come back even months after the duck flew away. 

Now we have this beautiful little flower flourishing on the threshold of winter.  It doesn't seem bothered by the shortened days and near freezing nights or the lack of water and tender care.  I guess this little flower of hope reminds me that though at times we may be clinging to brighter days like the last leaves of fall, we can still be bright, stand tall and blossom through the overcast clouds that sometimes hang over the day. 

Monday, October 18, 2010

Keeping busy

Things have been really busy since being home.  I left Seattle with a pinched nerve in my neck and it is still giving me some grief which not only makes me cranky because I have had a headache since Wednesday but makes it hard to get things done with any amount of efficiency.  The kids are healing up nicely.  They still have some pain, especially when they bend down.  Today, Shelbie bumped up against the counter top and that created a shooting pain at her biopsy site but other than that, no infections so that is great.

I have been trying to stay busy and not dwell too much on the future.  I really thought I was doing well until I opened my e mail this afternoon and saw that there was a message from Dr. S in Seattle.  All of a sudden I felt sick and dizzy.  A real physical reaction and I didn't even know what the message was about.  Turns out it was just a form I need to sign so that Children's hospital can store the kids' DNA.  I was really surprised at my reaction.  Stress is a sneaky thing, it can be so subtle, serpentining its way through a simple and mundane day without even being noticed. 

Last night, Sam just had this total crash of emotion.  He was cranky and crying and after 20 min of trying to get him to tell me what was wrong he finally said he didn't know other than he was just angry but he didn't know why.  I think anger is a way we hide fear.  It always seems like the kids are so resilient because they seem happy for the most part.  I guess they are really no different from me.  We really don't realize how much we worry about things.

Friday, October 15, 2010

The Butterfly Guild

While we were in Seattle, we had the great pleasure of meeting with a fellow SDS mom.  She has two children but her youngest who is 2 was just diagnosed a year ago with SDS.  We have been in touch this year through the email support group I belong to.  They live in Seattle so when she found out we were coming, arranged her schedule so that we could meet.  We hit it off right away.  Her and her husband have started a non profit organization to raise money for research in the area of Shwachman Diamond Syndrome.  I am a lousy fundraiser but am looking forward to helping her when I can.  If you would like to know more about the Butterfly Guild, you can visit her website at http://www.butterflyguild.org/.  If you want, you can also make a donation there. 

She was so sweet to the kids.  On Tuesday afternoon, a cookie bouquet was delivered to our hotel room from her and the family and was such a kind gesture.  We look forward to staying in close touch with her. It is always great to visit with someone who really does know what it feels like to be raising kids with a chronic illness such as SDS.  She really made our day with her thoughtfulness. They will be having a big fundraiser in February and our Oncologist will be the guest speaker.  She asked if Shelbie would also speak at the event so that is something that we will be looking forward to. 

Bone Marrow Biopsies


Walking from the parking garage into the hospital.  Three very anxious kids and one anxious mom!

 Well, this was the week we traveled to Seattle for bone marrow biopsies.  It has been a long week and I feel like we spent more time in the car than we did out of the car.  Things went okay, each of the kids had to give up about three times more marrow and bone samples this time than they have in times before so recovery has been slightly more difficult.  We met with a different Oncologist before the procedures because our other Oncologist whom we met in August was at the Fred Hutchinson Cancer hospital doing her research work.  We really liked Dr. Pollard as well, she is young and had a good sense of humor.  The kids were anxious and all that anxiety came out in teasing each other and cracking silly jokes.  We were able to spend a lot of time talking about what the possible outcomes would be. 

While in the consults with the doctor beforehand, she had said that only Sam would be tested for Mitochondrial disease stating that Dr. S had felt his marrow was responding in ways associated with Mito disease.  I have always felt that Shelbie more closely matched the mito disease so were able to talk that through.  In the end, both Shelbie and Sam did the mito testing.  They drew enough marrow on Spencer so if the other two come back positive, they will have all they need to test Spencer as well.  I didn't get a chance to take many pictures of our day there, they had 22 biopsies scheduled so we were literally being pushed through the procedures to make room for the next patient.  That was the only disappointing part of the trip.  With three kids, and one me, there was just no time to be a photographer.

I learned a lot about Mitochondrial disease.  I have been studying in preparation for these tests so I knew a fair amount but this visit was helpful.  Mitochondrial disease is very ellusive.  It can show up in the marrow, the peripheral blood or the muscles.  So, just because one area tested comes back negative, does not mean that the disease does not exist.  The disease can cause organ failure, memory loss, bone marrow failure and a host of other problems.  I am crossing my fingers that they don't have this disease in addition to SDS.  It would seriously compromise their health even more. 

Results won't be in for about 2 weeks on the marrow and closer to 2 months on the mitochondrial.  It will be the waiting that kills us!  Now that we are home, I have about a million more questions.  It's been hard the past few weeks because of the critics I have who think I am less than logical and question the things I do to take care of my kids.  While we visited with the Doctor, she commented that all the studying and knowledge I had aquired said it was very beneficial to the care of my children.  "You are so lucky to have a mom who knows so much!"  I have to say that made me feel really good and finally felt a little validation.

Thursday, October 7, 2010

Can I let this experience just be?

That's a line from an article I stumbled upon tonight written by Ezra Bayda, "Can I let this experience just be?...  When your mind is reeling in confusion, breathe deeply into the center of your chest.  Connecting to the core of your being this way extends loving kindness to yourself even when there's none in sight."  A timely message for a difficult week. 

I have been flattened this week by criticism about taking the kids to Seattle.  They don't think I am being logical, I've lost my mind, I'm traumatizing the kids.  It's maddening and seriously, I want to close the blinds, lock the door, turn out the lights and ignore the world and speak to no one!   I asked the doctor over and over if there was any way we could stay here to do it but the answer is no.  I know we are doing the right thing but I can't stand the critics.  It has put me in a real place of confusion that's for sure. 

The other difficult part to the week is that the kids are not dumb as to what is going on.  In August, the doctor used no discretion in discussing what she was seeing in their marrow from last year and other problems brewing.  It use to be, when they were younger, that they didn't have to know anything going on with them and they were not computer savvy so it stayed that way.  It's almost impossible now.  Information is just a click away. 

Tonight, Spencer came home from his friend's and the first words out his mouth were "When are you going to tell me what Mitochondrial disease is?"  I gave them the gentle version of what it is, a lack of energy in the cells, some general terms.  Shelbie has already looked up a lot of information about it and chimed in with some less than helpful thoughts which started a tumbling stream of tears from Sam and frustration from Spencer.  I don't know anymore how to protect them, shelter them from scary things.  It's really hard and sometimes I feel like there is no one on the face of the earth who understands or who can help me.  It would really be helpful if I had a supportive spouse. It's hard facing all this alone.  Ya, they have a dad but as far as his concern for me, he is not respectful or kind and thinks I am always overreacting even though I am only doing what the doctors recommend.  He likes to pretend that nothing is wrong and gets very angry when the kids know anything about their disease and problems.  He tells them everything is fine.  I tried that until the kids got older and wiser.  Tonight, Spencer said, "Don't tell us there is nothing to worry about and everything is okay when we already know it's not because when we hear in 3 weeks that one of us has leukemia, I will be really mad, that isn't exactly fine is it?" Ughhhh, What do you say to that?  How much should they know?  If I tell them too much, then they get depressed and scared but if I don't tell them enough they get mad and think I can't be trusted to be honest with them.  I seriously did not plan on the logistics of chronic illness being so tricky!  I kind of hate that part of it.

Well, we ended the conversation with the fact that God knows exactly the hour and minute that we will return home to him.  Whether or not we have a life threatening disease makes no difference.  We will live as long as we need to in order to learn everything that is necessary.  That seemed to calm them down.  Things this month will be really hard and Seattle will be lonely and difficult for us all.

A course in miracles

Besides being a great book, my life this week, and always, has been a course in miracles. I have been trying extra hard to not worry about Seattle and how I am going to pay for hotels, gas, food all the things to get there and back.  I have been trying to live in the moment.  I shouldn't be surprised when God blesses us so abundantly because afterall, He is God and can do the impossible but I am gratefully surprised. 

Additional work this week has just fallen into my hands through no effort of my own.  When I went to retrieve the mail today, there was a profit sharing check from my former employer for $100.  I had no idea I would ever see something like that!  I have a little extra work to do this weekend and one of my cleaning clients gave me a large tip today.  I have been doing some drafting on a kitchen remodel for our Vet and in doing that will not have to worry about paying for the dog to board. 

These blessings have come at just the right time, I know, I shouldn't be surprised by that either!  The money will cover the hotel costs and some of the expenses for gas.  I am so grateful.  God has been good to us.  This weekend is Thanksgiving for me since I am a Canadian.  I truly have much to be thankful for.

Wednesday, October 6, 2010

The schedule is set...now what?

Well, I heard from the Doctor in Seattle and her scheduling nurse today.  The kids have been scheduled for their bone marrow biopsies and mitochondrial testing.  Since this is a public blog and I tend to play more in the arena of cautious and paranoid, I won't advertise when we will be gone but it will be before the end of the month. 

I had no idea I would have such an array of emotions and feelings.  I am relieved that we can get this over with sooner than later.  The kids are relieved too but all of us are feeling this anxiety that comes from doing something new.  Of course, BMB are not new but the hospital and city are.  We had grown comfortable with St.Lukes in Boise.  All the nurses remembered us from year to year, we knew the protocal and felt secure with our doctors and his assistants.  When we began doing them here in town, even though it was a different venue, we were still fairly comfortable because we knew most of the nurses at the hospital so that helped. 

Now, we are in a huge city that we are still not comfortable with, a huge hospital and the doctor we loved so much in August will not even be there!  It will all be so new but I guess that is to be expected.  I was really hoping that we could get a room at the Ronald McDonald house but their waiting list is so long they are requiring a minimum 4 night stay.  We will only need 2 nights so I will be hitting Priceline to see if I can find us a cheap deal. 

I am experiencing that old familiar "I changed my mind" feeling.  I don't want to know if the abnormal cells have become leukemia, I don't want to know if they have mitochondrial disease, I don't want to know how many donors might be a match for my kids, I don't want anything but a big rock and an elixer that will magically float me back to the river of 'De-Nile' and crown me 'QUEEN'!! Is that unreasonable? UGH!!

Monday, October 4, 2010

They don't look sick

This is a piece a wrote 8 years ago in my journal.  I wanted it to be part of the journey I am posting here in cyber land...

'It's 2:00pm, the kids tumble through the front door after school bringing with them renewed energy and empty tummys.  After a quick and less than nourishing snack, we pile ino the car to tackle the chores.  It's difficult to blend into the crowds with 3 active kids, one of whom as bright orange hair!  We can always count on two or three remarks about the hair, inquiries as to its origin, followed by "Do you ever have your hands full."  My standard reply, "You have no idea!" and I feel my insides cringe with anxiety at this exaggerated understatement. 

Occasionally, the conversation will then focus on their size.  Such tiny compact frames which so obviously disagrees with their calendar age.  In a moment of weakness, I tell them of the genetic disease which has found a home within their non-consenting bodies.  They want to know more so I share with them the Disney version of our ride through chronic illness.  It's not for pity or sympathy but just to be heard, understood and validated.  Funny how I allow a total stranger to witness this.  During our conversation, they will inevitably make two more comments. "How do you manage to smile?" and "Well, they don't look sick."

No sooner does this exchange take place that the masquerade of strength and courage tempered with a measure of apathy takes hold.  The timing is graceful and emotions just enough to soften the cold hearted sound of my voice.  Each word is carefully selected and skillfully used to protect the raw emotions never meant or allowed to be revealed.  I pull it off as if each sentence had been choreographed, rehearsed and refined more than a thousand times.  Despite my best attempts at a scientific explanation of what Shwachmand Diamond Syndrome is, there is still confusion surrounding our communication.

I even ask myself what the disease is.  The doctors behind their fancy titles act like they know but really they have no idea. Some days, if I'm lucky, I feel pretty confident in managing my children's care but then out of the blue, a new problem is discovered and then a shiver pierces my spine and I realize that even I don't know what SDS is.  We have been told the basics, pancreatic insufficiency, bone marrow failure and a handful of other abnormalities but if you ask me, this is not at all what SDS is. 

SDS is mischievious.  It's a rebellious soul wreaking havoc on a peaceful quiet home.  Don't turn your back on it for one minute because as sure as you do, you will lose your grip on reason and logic.  It moves fast and plays a game that will make you feel crazy.  Soon your family members and trusted doctors will begin to question your mental stability.  For the most part, no one knows the rules to this game of wit, especially the doctors but a mother knows.  We take on the rage of this wayward thing known as chronic illness.  It's the magic of a mother's intuition that saves the soul.  The soul and heart of her precious family.  We suffer the criticism, the accusations and accumulation of well meant but hurtful comments that sear and scar our fragile self esteem.  We fight and fight in the name of love until our point is made.  Each day, we awake on the battle front, poised in a bunker to bravely shield the innocent from the ever present force of SDS.  We don't have the luxury of turning our backs.  To do so would be giving up hope and greater peace. 

The encounter with the stranger comes to an end and my wandering mind returns to the moment.  Life becomes normal until you are forced to discuss it.  The speech is so rehearsed I don't even have to concentrate on my words, they just spill out.  However, I am never lucky enough to escape one final heart wrenching statement, "Well, they don't look sick."  They sound as though I just made the whole thing up.  I purse my lips and say goodbye.

Perhaps they don't look sick but does SDS  have a 'look'?  Does any chronic illness have a 'look'?  If you want to know what SDS looks like, don't look at the kids, look at the mother.  SDS is grey hair at 30 spiffed up with dark, hollow circles under the eyes from keeping watch through the night to temper the fever.  It's another migraine from trying to understand 1/5 of what the hematologist is saying.  It's falling tears sometimes just because someone understood me today but usually out of shear exhaustion.  SDS looks like supermom, hyper organized in managing a care plan because no one else will and all the while being caught up in an undercurrent of fatigue.  It's bruised egos, broken hearts and scraped esteems.  The mother is the shock absorber, the preservationist for childhood innocence, the glue that keeps the heart together. 

So, one final question they ask, "How do you manage to smile?"  A smile is a little care package from God that he sends to pass along to my kids.  A reassurance that He is here, mommy is here and everything is going to be okay because they are my joy and my delight.  A smile magnifies my love and by the grace of God, strengthens my ever growing weakness.

Saturday, October 2, 2010

What happens next?

Last night, I got to thinking about the road we have been on the last 18 years.  Sam and I went to the pool last night late.  As I sat in the hot tub and watched him splashing, diving and swimming as fast as he could from one end of the pool to the other, I was amazed that this little guy so much smaller than his chronological age, who has had more challenges and struggles in 12 years than my 41 years could have so much energy at 10:00 at night.  It's hard to believe that he suffers from bone marrow failure, it's hard to believe that there is some uninvited guest messing with his body that seems so strong. 

I remember clearly that day 14 years ago when we headed down to Salt Lake for yet another doctor visit.  The situation was strange.  Shelbie was being sent to University of Utah to see an immunologist and Spencer was seeing a gastroenterologist at Primary Children's.  Their visits were only 20 minutes apart which meant I stayed with one and my husband went with the other.  This is where it all officially started.  Ya, there had been plenty of hospital stays, doctor visits, rides in ambulances, even several resuscitations but no one could figure out what was happening. 

Again, I sat in the waiting room with my two little kids, Shelbie 4 and Spencer 2 at my feet and couldn't imagine that there could be anything wrong with them. They were happy, they played, they smiled.  I somehow felt that all the weird illnesses, infections and weight loss would stop on command just because a guy in some lab declared that all results were negative. 

The results were not normal.  I can't forget when the GI doc said that there were only two diseases to cause pancreatic insufficiency cystic fibrosis and shwachman diamond syndrome.  We had already done all the cf testing and it was negative.  She said, "Your children have Shwachmand Diamond Syndrome."  I couldn't believe her.  We left with a description of what our life would become.  Bone marrow biopsies, pancreatic insufficiency, failure to thrive, recurrent illness, learning disabilities and the list went on.  I read this with a firm belief that there had been a mistake yet it all sounded so familiar.  It was as if they were writing about my kids!

It feels a little like deja vu.  I have tried to avoid the internet.  You know me, searching to learn all I can about diseases doctors think we have.  Mitochondrial disease is not one I want my kids to have, like I have a choice.  The more I read, the more it speaks of my kids.  The more pieces begin to fall into place and explain all the strange things that have happened especially lately like total failure of Spencer's gallbladder, Sam's intessception last year, Shelbie's memory loss, bone and muscle pain.  It's hard to wait for our pending bone marrow biopsies.  It's hard not to think of how the kids will be challenged in the days, weeks, months and years to come.  It's all really hard but then, I experience moments of clarity like today as I listened to conference and was spiritually fed to keep my faith strong and trust in the Lord.  Despite how hard things are, I get excited to think about all that God is going to accomplish in our lives.   I can't wait to see what happens next!