It has been a very long time since I have visited this dusty old blog.  Today I felt like I needed to get this off my chest.  Tomorrow I will probably regret airing some true and raw feelings but for now this is my life.  Pull up a chair, and grab a drink.  This is gonna be long!
Growing up and until a couple years into my marriage I thought I had good life.  No, I DID have it good.  I was loved, comfortable, fairly struggle free.  I was close to my family, a regular church goer, gliding through what I thought my life would be like.  
One day I got a call from home - my parents were divorcing.  What??  How can that be?  I had no clue that was coming and it knocked me over for a long while.  
Life went on and we had our first child.  Thad had 2 jobs at this time - a university job that paid well and gave good benefits.  He was also a partner in a company with a professor/mentor from the university.  We were very close with his partner and his wife.  They were like second parents to us and we spend many many hours in eachother's company.  After Mackenna was born and I was pregnant with Tanner we decided to move for various reasons.  We did not feel that we could raise our children to way God wanted us to where we were.  When we approached Thad's partner with us buying him out he seemed ok with that.  As time went on we ended up in a big legal battle, all our savings gone, a heartbreaking loss of friendship.  But we had the company and Thad was determined to make it work.  
We moved to CO near his family.  Time marched on and after some ups and downs with the business Thad had to shut it down.  His "baby" that he worked so hard to see succeed couldn't keep our family afloat.  He found a job thankfully.  Around this time we had our 3rd son.  Life was settling down.  
We got another phone call.  My dad had cancer.  It was bad.   I hated living so far from him and the rest of my family.  Hospice called and told us we should probably come "home" if we wanted to say goodbye.  We left immediately and ended up having a couple weeks with my dad.  For that I'm grateful.  I was with him when he passed and I had always felt like death wold be fairly peaceful.  It was not.  It was the most agonizing couple of hours I have ever witnessed and I was begging God to take my father.  I am haunted still by those images.  
Meanwhile back in CO Thad was miserable.  His boss was mean, condescending and not a fair man.  Thad looked - and found - another job.  A good one.  He loved it there.  Peace again.  We got news after some time that the company was being bought out.  There would not be a job for long.  
Thad decided he would search for a job in MI near my family.  I had always struggled with living far from home so I of course was thrilled.  He interviewed and was offered a great job right where we wanted to live.  So we packed up and moved to our 3rd state.  The job was again great.  A perfect fit for Thad and he thrived there.  It was nice for me to be where I consider "home".  The boys settled into school and made friends quickly.  We joined a church that was pastored by the pastor that married Thad and I.  
Guess what?  After some time Thad got news - his company was closing down here and relocating - to CO!  Seriously!  We just left there!   So time to find another job which he did fairly quickly.
For me - well all the boys were in school full time and I finally decided I needed to get back to work.  I got a job as a veterinary technician - and I loved it.  I was a vet tech prior to kids and it felt great to be doing that again.  Well not 3 months into the job and we found out I was pregnant!  My life I thought had come to an end!  Seriously I wanted nothing to do with this.  I was so disappointed to be pregnant  - my youngest child was already 8.  I had just started to get some of "my" life back beyond full time motherhood.  Soon I had morning sickness that was awful.  I also started spotting a bit and since I could barely get out of bed I had to quit my job.  At my 20 week ultrasound I was full of anxiety.  I have always wanted a girl.  I love my 3 boys and was satisfied with my little family.  But man did I pray for a girl.  We took the boys with us and almost right away the technician told us it looked like a girl to him.  I was overjoyed!  Suddenly this pregnancy I didn't want was giving me the gift of a daughter (not that a son wouldn't have been a gift either).  The rest of the ultrasound was uneventful and we were thrilled at the thought of our daughter.
July 14.  I had been contracting for days and was quite miserable but I wasn't due for a couple more weeks.  I went to the dr. for a scheduled visit and he told me that I had no amniotic fluid left and I needed to be induced immediately.  I called Thad at work and walked next door to the hospital to check in.   Labor was smooth and fairly quick.  When Sienna was born and placed on my chest she started coughing.  The nurse took her to clean her up and I could still hear her coughing.  I asked the nurse when the pediatrician would come see her and she said "tomorrow, unless there is a problem".   We called my mom and the boys and they soon came to meet Sienna.  Then the pediatrician walked in.  Uh oh!  He isn't supposed to be here till tomorrow!  He looked at us and picked Sienna up and said "I have looked her over from head to toe and..." in my mind I finished he sentence as "she is perfect".  But he actually said "she has many characteristics of down syndrome".  Today I am ashamed to admit that was a huge blow.  I was crushed.   Not only that but she was having trouble breathing so they had to transport her to the nearest Children's Hospital where she spent the next 11 days.  I really had to mourn the daughter I was expecting vs. the daughter I received.  I didn't know at that time how much love I would have for Sienna and how precious and wonderful she is.
During this time we had been praying that Thad's parents would move from CO to MI.  They finally decided to do just that - I think in part to us having Sienna and in no time they were living less than 5 miles from our house!   We were thrilled - I actually love my in-laws!   
Several months later there was a knock at our door.  It was Thad's brother and mom.  They came with the news that Thad's dad had been killed in a tragic accident.  We were in shock and this was a difficult time.  
Shortly thereafter I felt led by God to adopt another child with special needs.  I had been following the group Reece's Rainbow for some time and told Thad I really felt God was calling us to adopt a particular child.  We knew what Ember's diagnosis was but didn't know the severity.  International adoption costs a lot of money.  We begged and borrowed the almost $30,000 it cost to adopt her.  We were blessed with many generous gifts from friends and church members and we used credit cards for the rest.  
Upon meeting Ember we fell in love and also fell into fright.  Her arthrogryposis was quite involved.  We had no idea what we were getting into or how she would fair in life.  The past 2 years have involved several surgeries, 14 trips to Philadelphia where she gets treated, 4 prosthetic legs, 5 AFO's (leg braces) and 2 years of weekly physical and occupational therapy.  Ember's medical and traveling expenses have nearly broke us.  She is worth every penny but let me tell you - medical stuff isn't cheap!
So now we've got 2 little girls with special needs.  The boys are doing well.  We are settled into somewhat of a routine.  Small hardships come up - decisions about where to send the girls to school has been a recent one.  Thad and I vowed to each other that we would send the boys to a Christian school.  It was very important to us.  Tuition was a stretch but doable.  Until the girls.   I was relaying to friend my worries about money, tuition, and the decision of where to send the girls to school.  See, during the past couple of years we slowed down on our church attendance.  I felt closer to God, more in His hand, yet so utterly exhausted by life.  Every day feels like a fight and a worry.  Sundays became my day of rest - by that I mean seclusion.  I didn't want to deal with the girls at church.  Put them in nursery?  Keep them by us and risk Sienna making a scene?  It was easier, and more restful to stay home.  Christian ed. became even more important because that was where the boys would be able to continue to learn about Christ and be around Christian friends.  I was telling my friend how I wanted that for the girls too.  That they deserved the same Christian exposure that I was giving the boys.  I felt too that the school they were at came down to particularly Sienna's level and were satisfied with that.  At a Christian school I hoped she would be pushed to a higher level.  Well my friend basically told me it wasn't worth it.  I should keep them in the public school.  I was crushed.  I am sure no harm was meant but what I HEARD her say was that my girls were not worth the expense.  
That brings me to this past winter.  What a long cruel winter.  In January Ember was scheduled to head back to Philadelphia.  I flew with both girls to that appointment.  Thank goodness we were at the Ronald McDonald House.  On Sunday night - before Ember's appts. on Monday I was giving the girls a bath.  My rt. hand started twitching and suddenly I couldn't move or talk and I fell over on the floor.  I must have had a seizure - I remember twitching some and Ember later told me that I was shaking.  After the seizure I was on the floor and the girls were screaming and crying.  I couldn't move or make noise.  In my head all I was thinking was "so this is what a stroke feels like, and please God do not let me die in front of the girls".  After a bit I slowly was able to make sounds and move.  A little longer and I asked Ember to start screaming for help.  Then I was able to start yelling myself.  As I gained movement I dragged myself to the door and opened it.  I screamed until help came and asked for an ambulance.  
Leaving my girls with strangers was one of the worst things in my life.  Long story short - at the hospital I had another seizure and ultimately was diagnosed with a blood clot in my brain that caused some mini strokes and seizures.   I spent a week in the hospital there.  I thought I was at my lowest.  We already have stacks of medical bills.  On top of that this occurred in January - our insurance had just rolled over and we started a new deductible cycle.  That wouldn't be an issue except that as of Feb. 1 Thad was starting a new job!  So from Jan. 1 - 31 we had 1 insurance and deductible and then we started from scratch again on Feb. 1.  Basically we now had 2 deductibles to meet - and our plans just happen to be "high deductible" plans.  Lucky us.  It has been a pretty low winter.
Spring is now here.  The weather is finally looking good.  The sun is out, the temps are warmer.  That always helps.  Sienna has learned how to escape our house and she runs away.  Down the road. With no fear.  The other day she got out and was at the edge of our pond.  It is terrifying to lose your child like that.  We put hotel style locks high up on all the doors.  With 7 of us someone is always in or out and I've been going crazy obsessed with keeping an eye on the door locks and knowing where Sienna is all the time.  She LOVES to be outside.  We have a small fenced area for her - but she has figured out how to climb over.  Ugh!  I am earning my gray hair.  Now we are faced with having to put in a tall fence - or to never let her out to explore.  It just isn't possible to be out with her all the time and it also isn't fair to her to have her cooped up all summer.  
Today while I was eating lunch I got a call from Ember's teacher.  Her first words were don't panic, the girls are fine.  Their bus was in an accident on the way to school.   The impact was right where Sienna sits.  Drivers of both vehicles were taken to the hospital.  I do not yet know who was at fault or exactly what happened.  I got to the accident to get the girls and there were police, paramedics, tv cameras everywhere.  Overwhelming for me - let alone a little kid.  Sienna was sobbing in the arms of some man.  She clung to me and cried.  Ember seemed fine.  Thank heavens they are fine.  None of the children were hurt.  We were so lucky.  Sienna has had a rough day crying off and on but she was exhausted and is now sleeping soundly.  Now I wonder again - why?  I have so many "whys" to ask.  As I reflect on my life - I wonder when I'll break.  Clearly all these things happen for a reason.  God is certainly trying to refine me.  Stretch me in ways I must need to be stretched.  I can't take the stretching much longer.  Honestly after today I am ready to break.  Tomorrow I will get up and face the same battles and I will wait for the next crisis.  There is always a next crisis it seems.  I know I have a lot of growing to do.  A lot of things I could - and should do better.  But I'm tired.  I want a break.  On the positive side I have the most amazing family.  I love my husband, I love my boys, and I love my girls so much.  I'm so proud of each of them.  In reading online about the accident someone commented on the article by saying "thank goodness it was just the short bus".  How can someone be so cruel.  I commented back and said "I hope you are never blessed to have the privilege of loving someone "different" than you. As a mom who had 2 little girls on that bus I can not believe there are still people who think like you do. My girls are just like you - they get happy, sad, and today they were both scared. I'd like to be angry at you for your comment but all I feel is pity for you."
Today I want to run away from everything.  Tomorrow I'll regret baring my open wounds.  

Nope, I had no choice at all.  You see, the past month or so our family has been witnessing a miracle.  I honestly doubted I would see the day.  I mean I hoped.  I prayed.  But I still had my doubts.   Ember started to take independent steps.  At home as of yesterday she will ask us to stand her up and she will walk across the room or even around the kitchen.  Pretty impressive. 


She blows me away with her spirit and determination. I am learning to never say "never" and not to underestimate the miracles my Lord can show me. So, what was I to do? Well it was clear - the girl needed new shoes of course! 

Shiny, sparkly, new shoes picked out by the princess herself! Miracles are real. I witness them daily.

Today I am tired.  Today I don't feel like I can do it.  Today I feel as if I don't have the fight in me or the brave face to put on.  
The last few months - weeks have been emotionally hard for me.  The girls are doing great really.  They are happy and healthy.  I can't ask for more.  Yet I WANT more.  More for them, and selfishly more for me.  
It started with a routine visit to Philadelphia Shriner's with Ember.  I had such huge hopes and expectations for this visit.  Ember's arm surgeon had finally agreed to look into a muscle transfer to give her some active bicep action.  The procedure I wanted him to consider involves taking a specific muscle from her leg and moving it to her her arm.
  Gosh I was really convinced this would be the perfect solution.  Well to make a long story short after being anesthetized and much investigating the Dr. found she doesn't even have the muscle in her leg at all.  None.  
Other things with Ember I'm struggling with are just her lack of physical independence.  She would be fully potty trained by now if it weren't for me.  She requires total help.  There are just times in the day where I can't help her right away, and sadly there are times when I just plain ol want a break from that helplessness.  Then I feel guilty because it isn't her fault.

Both girls just had visits to the ENT.  Both have continuing issues.  Ember needs tubes (next week).  Sienna still have pretty big holes in her eardrums and it is causing her hearing to be worse than before.  She is having a sedated hearing test on Monday so we can gauge exactly where she is at and how to deal with it.  
I spend all my free time researching.  How do I teach Sienna to speak clearly?  How do I teach her not to run away from me all the time.  What are the best school options for both girls?  How can I get Ember to be more independent?  There are some great looking assistive devices out there but how does a family afford those things?  I could go crazy buying different things for her to try out to make her life easier.  I could also go broke doing so.  I want so badly to find the solutions for these girls.  Things that will help them maximize their fullest potentials.
  
I got a letter in the mail today with a class list for preschool for Sienna this fall.  I had thought that trying 2 mornings in a typical preschool would be good for her.  Today I am filled with fear and doubts.  Her class has 20 kids in it.  It is a private school so there will not be lots of aids to help.  I'm worried I made a mistake enrolling her.  Then there is the idea of tuition.  We can't really afford the additional tuition but I wanted her to have the same chances as my other kids.  Now I wonder if the public school is the better choice where she'll have extra support is the right place - but then she isn't in a "typical" classroom.  
Today I am just tired of this.  Ever night when I get Ember ready for bed I face a choice.  Do I put her elbow in a splint to hopefully gain/keep flexion - do I brace her foot tightly to keep it from regressing?  Do I then listen to her cry because it hurts?  Do I wake up with her during the night because she wants me to loosen the splints?  Do I NOT splint and then face the consequences of that?  
I just want what is best for the girls.  Heck - I want a physical and occupational and speech therapist to follow me around to advise and help.  I want to be a lotto winner so I can buy all sorts of devices and aids for the girls.  I want a clone so I can rest while the "other me" carries on.  I want to be able to give my boys what they need of me as well as the girls.   I want a boost of strength and knowledge of where to go and what to do for them.  I don't want to worry so much about their future.
 I know one thing.  I love them so much.  I would give anything to make their lives better.   Tomorrow I will get up, do my best, and CELEBRATE because Sienna has a birthday.