Babies Don't Keep

Time has a way of marching on.  You can't stop it, contain it or add to it.  It just ticks silently by.  Somehow your three year old that you are just certain started preschool is now somehow in the 5th grade.  Growing taller, stronger and smarter with each passing day.  I told him before he went to his first day of 5th grade I was going to shrink him back down until he was three years old again.  He just laughs at me and says "mom...your so funny."  I smile back but the truth is I can't believe how fast time flies by.  I can't keep him little.

I am so proud about what Luke has accomplished.  He has defied the odds and this mama celebrates his life! So many days he is my hero.  I look at him and I feel his strength.  What a blessing he is.  I remind myself to hold on to every moment, every hug, every time he wants me to play with him, because I know there will come a time I will not be a preferred playmate.

Here is her sweetness on her first day of preschool.  Three years old and ready to conquer the world!  Oh how I lover her adorable cheeks and the fact she let me dress her and do her hair any way that I liked.  How is it possible she stands in front of the same door (same doormat and boots) and has grown up into a 3rd grader?  Be still my heart!!!

I'm so happy that she was excited for school this year.  She made me so proud on the first day the way she marched right into her classroom and embraced her new school.  The school she desired to go too.  What a perfect fit her sweet personality.  A small class of 17 kids and personal attention and connection to her teacher. I am excited for her school year and happy to be on this side of the valley we went through last year.

Oh how I long to hold that sweet little baby again!!! She was 5 days old in this picture.  Complete miracle and I am pinching myself because I still can't believe God allowed me to have her.  She has changed me for the better.  She has taught me so many lessons (as all my kids have).  Babies don't keep...her newborn smell faded, she learned to hold her head up, roll over, talk, crawl, walk.  So much in the first year. 

You blink and here is the same baby ready for her first day of preschool!  Where did the time go?  She did incredible on her first day.  Marched right into her classroom and talked to her teacher.  NO TEARS!  A year ago (heck three months ago) I didn't think preschool would be possible for Bella.  But here she is....making progress...ready to learn and spread her wings just a little more.  

I keep holding them tight because even though they will always be my babies...babies don't keep.

Track Meet Wrap Up

This afternoon, I had no idea how much emotion I was going to feel when we showed up for Luke's track meet.  Months earlier, Luke begged me to sign him up for track.  I admit I was nervous.  He hasn't participated in an after school sport before.  There is a process by which allowing him to participate in track requires that I have to "let go" and allow him to navigate the world without me.  I agreed to track and in turn allowed him the opportunity to grow. 

Participation in track would mean Luke would have to remember what days to not get on the bus to come home.  He would have to find his way to track practice and navigate where he could change into his track clothes.  Luke would have to keep track of his coat, backpack and lunch box on his own.  I realize that a lot of this should sound simple enough for a 10 year old, but for a kiddo with special needs it is a lot of change in routine and would require he pay attention to detail.  That left this mama biting her nails.   

Luke accomplished all of his goals for participating in track and I couldn't be more proud!  He attended all the practices and knew everything about what was expected of him at the meet.  He even selected the four events that he wanted to participate in (standing long jump, 400 meter relay, 100 meter dash and throwing the mini javelin).

He was even selected for the team tug-o-war competition.  Yes that is my son posing for the camera prior to the event!  LOVE HIM!  

The track meet was held at McKenzie Stadium.  It is a special place for me.  I watched many high school football games during my high school career. Also Mark and I graduated from High School together at that stadium in 1997.  I walked down the hill into the stands and the memories came flooding.  The sights, sounds and smells...all the same.  I had to fight back the tears.  It was weird and I didn't expect that reaction.  I decided to sit where my family sat when we graduated from high school.  It was close enough so I could watch Luke, but far enough away to let him be with the group.   

 

I watched Luke compete in his four events.  He finished 4th in the tug-o-war and last place in everything else.  One might think I would be sad he didn't do better, but it was quite the opposite.  I could careless what place he came in.  He did it!  LUKE.ACCOMPLISHED.SOMETHING.BIG!  He followed social rules, didn't argue, didn't become upset when he wasn't first.  He tried a new thing, he wasn't afraid!  Luke put his heart and soul into that track meet.  He was really slow, but it didn't matter.  As I watched him running his heart out during the relay on the opposite side of the track, I couldn't keep the tears from falling.  I learn so much from him.  He taught me that you can't let your fear hold you back from trying new things.  He is my HERO!

I was talking with my mom a bit while waiting for Luke to compete in his different events.  I told her this was so weird to be at McKenzie Stadium with my own children.  It wasn't that long ago I was their and she was the parent.  Mom reminded me that time keeps marching on.  It does.  I'm 34 years old now.  My kids are experiencing things that I have connections to.  I can't help thinking maybe this is part of our legacy to them.  Putting down roots in the same place we had roots.  So many memories for me, now are becoming memories for them.  Time marches on.  I wouldn't doubt that someday I will sit in the same place my parents did and watch them graduate from the same stage.  And now I am doing the big ugly mama cry.  Because I don't want to let go.  I don't want them to experience failure or hurt or pain.  But I know I have too.  I don't want to.  But I need to let them take more risks and reap the benefits of success or learn from the lessons of failure.   

It's true...Luke amazes me.  His tenacity of purpose, his zest for life, his internal joy that spills out to EVERYONE he crosses paths with.  What a gift he is!  What a blessing!

 

And just for kicks...this is the way Miss B was the ENTIRE track meet.  She HATED the loud sounds and air horns.  I got some awfully nice stares from the older couple in front of us regarding her crying...whatever...I was there to cheer on my son! 

 

So today Luke...I celebrate you and your accomplishments!  Thank you for pushing mommy to do track, because I learned a lot of important lessons.  I am SO proud of you! Till next year...when I have two of them in track!  Grace has already announced she will be running next year!  You go girl!  Mama will be there cheering you on too! 

Updates...

It's the end of the month...time for updates!

Luke is so TALL!  Every time I hug the little guy, I swear he grows another inch!  During May he returned back to occupational therapy at Legacy Salmon Creek.  It is amazing how a month back on track has effected him in such a positive way.  He is cooperating more, sensory behaviors have lessened to some degree, he is wearing his compression shirt and is tolerating 15 minutes of iLs (our listening program) a day.  This a HUGE improvement from the boy who refused and threw a BIG fit if I put the headphones on him.  The month also brought an intake for counseling to help me and Luke at home.  He played several awesome baseball games, and he took a field trip to Fort Vancouver.  Luke is getting ready to earn his green belt in karate.  His eyes are stable for now.  We have another appointment at Casey Eye at the end of June.  The doctor is planning on giving him another visual field test sometime this summer. 

Grace is doing very well.  She is still enjoying her pierced ears, although I have to admit she loves to go through earrings. :)  She has been getting ready for her big ballet showcase in June.  Her dance class is tapping to the song "It takes two."  It should be really cute!  We just had her dance pictures taken yesterday.  Nothing like 12 girls in red lipstick :)  She is doing well in school and despite setbacks in reading she has been catching up to grade level.  I attended her 1st grade music performance in May and watched her sing her little heart out and twirled her ribbon.  She shinned!  Grace is anxiously awaiting the return of her speech therapist (who has been out on maternity leave) so she can attend therapy at the same time as Luke. 

 This little pixie has been acting "2"!!! This past month she has mastered the art of screaming at the top of her lungs when she doesn't get her way, throws her self on the floor and yells "it's not fair", and has eaten more fruit snacks than I can count.  She is picking up words so quickly and communicating with me all the time.  Her favorite activity this month so far has been going to the "mailbox" so she can open the box with the key.  This ususally goes on until I drag her screaming out of the post office. 

This month brought me a lot of appointments for the kids and myself.  There was not one week that did not include at least one medical and one therapy appointment.

I found out recently that Luke's teacher (whom I adore) will not be looping up to 4th grade (like everyone had been telling me she would be).  I was crushed and I cried.  I actually began thinking that this summer I could relax and not worry about what the next school year would hold for Luke.  I could enter a year and have the teacher know my son and my son know the teacher.  There would be a relationship established and the teaching and learning styles known.  The thought of having to introduce another teacher to Luke and begin the fight all over for his needs next fall is a daunting task for me.  I was looking forward to having a break from the "advocational" role this next school year, but it's not to be.  Sometimes the fighting is non-stop.  Today I just have a bad attitude and it doesn't seem fair.  I know life isn't fair, but today I just want it to be.

This has led to me having trouble sleeping.  I have a difficult time falling asleep when Mark is gone.  My sleeping patterns are way off.  He has been gone probably at least half the nights in the last month.  It gets lonely a lot.  I try and keep my kids as the sole focus and count my blessings to keep a positive attitude, but I must admit I don't always do this.  I am certain I yelled at the kids when the windows were open and the neighbors heard my sin.  Sometimes moms just yell.  I hate that.  I read that when you yell it only shows that "no one is in control."  I could use prayers and support.

Mark's activities consist of work, president of the deacon board at church, helping our neighbor build a room in their garage, hiking Dog Mountain, poker night.  I don't know how he does it.  But I am glad he is a better time manager than I.  I am working on it.  When everything boils down...I.just.miss.him.alot!!!

Discouraged...but still fighting

Sometimes when it rains....it pours.  This was true this past week.  The week started typical...Monday morning errands and such.  What the rest of the week would entail, would be absolutely unbelievable.  Through the process of researching Luke's most current IEP, I discovered that the school district was not providing services listed on Luke's IEP.  He had been missing 45 minutes of services per week.  Not only was this a HUGE oversight by the school district, it is illegal.  Luke is entitled to a free and appropriate education and they failed to provide that.  The director of special education is involved now and I am seeking restitution for the missed services and service time for Luke. 

This situation leaves such a bad tasted in my mouth.  I entrusted my son into their care.  I even spent time talking with the staff at the school before I enrolled him to let them know my concerns, thoughts and apprehensions.  They broke that trust and now I feel that I have to check and double check just to make sure Luke is getting his services and they are doing their jobs. I just always feel like I am fighting and fighting and fighting. If I let my guard down for one minute, I feel that something horrible might happen.

This situation has caused me to question everything.  Education, special education, IEP's, what really is important in the education of a child.  I am left feeling empty, confused and sad.  It even makes me wonder why we have special education when staff doesn't care to read or follow the IEP (Individualized Education Plan).  It is absolutely disappointing.  I think was is the most frustrating for me is that the school district and teachers were cheating my son, Luke, out of what was legally and rightfully his.  Really!!! They are messing with my baby.  He has been through so much, and to now to have those that are supposed to be protecting, educating him and helping him, not even follow through makes this mama MAD (to say the very least).

On the home front...I am really missing Mark.  He is gone a lot and I am left to ease the feelings and actions of 3 little people who miss him dearly.  When Mark was home this week, it seemed everything and everybody was just pulling him away from spending a few minutes together.  His phone would ring (a friend), his phone would ring (friend from work)...van had a leaky tire, the neighbor needed his help, the neighbor needed advice, the church needed him to go down to the bank to sign some papers for something, etc, etc...

To top it off, the one night we had together with him home this week Bella got sick.  Of course, Friday night, she would not be feeling well.  She wouldn't go to sleep and had difficulty staying asleep. Up at 11pm, up at 2am, up for the day at 4am.  I knew right away she had an ear infection.  Got up Saturday (well waited for Urgent Care to open) and took her to the doctor.  DOUBLE EAR INFECTIONS.  The doctor said her ears were bright red and bulging.  This is her 4th ear infection in less than a year.  I think we have ear tubes in her future.  It might be time to call Dr. Wilson.  Ughh.  My poor baby.  Mark's train was called when Bella and I were still at the doctors, so we missed spending time with him again.  Thankful for both Grandma and Mimi, who stopped by today. 

Tonight I was supposed to get to go to a girl's night...a night off.  I had a babysitter and was really looking forward to grown-up conversation and a time to vent, laugh and not have responsibility for a couple of hours.  But..due to the ear infections it didn't happen.  I really needed that break too.  Oh well..Bella needs me and I am where I am supposed to be...but I can feel disappointed.  Another time.

So that is my fantastic week in a nutshell.  I am believing next week will be better.  Despite all the difficulties I am thankful for so many things...a home, my children, my husband, a place where I can access medical care for my child on a Saturday, friends that care and grandmas and Mimi's that stop in and help out.  Tonight I am thankful to the doctor who prescribed numbing ear drops for my baby, so that for the first time in 4 nights I will be able to get some sleep in my bed and not sitting in a rocking chair.

Change has come...

My days are filled with activities that revolve around those 3 precious blessings shown above. 

Luke has settled into the school routine...finally...and I am happy to report that he is enjoying school and even has been making friends.  He comes home from school eager to do his homework (which is usually a fun activity that the teacher sends like bingo, or word scrambles).  We continue to be impressed with his teachers' knowledge and instruction for kids with special needs like Luke.  Thursdays are still therapy days at Legacy Salmon Creek.  He enjoys the one-on-one time with his therapist, Joy.  I enjoy the support she gives me as Luke's mom.  It is truly a partnership...a partnership, a delicate balance, a well choreographed dance, between therapists, teachers, doctors and specialists that help Luke excel.  I can report I honestly feel settled and have made PEACE with his health diagnosis'.  I continue to advocate for him, making sure that the school is doing all they can for Luke and that he is receiving the services noted.  He is also in level 2 for swimming lessons (which we all attend once per week).  He is more confident in the water, and truly seems like he belongs in that class.

Princess Grace is happy at school.  She has a gazillion friends, enjoys music, library and hot lunch... and oh yes...the MONKEY BARS.  She comes home each day and reports to me her monkey bar successes and failures.  "Mom today I did the monkey bars backwards."  "Mom, today I couldn't do the monkey bars." :) It is so funny to me that EVERY book she has brought home from the school library has been mainly pink in color, Barbie or Hannah Montana.  Too funny.  She cracks me up.  Her teacher adores her, and the feeling is reciprocated by Grace.  Although she is struggling in reading, I have chosen not to take on the guilt, and be grateful and thankful that a reading program is available to her each day and that it just a FREE service they are offering to her.  She has been begging me to return to dance class.  I am thinking on that one.  I want to support her interests, but at the same time have to make sure that we can commit fully to the activity.  Grace is taking swimming lessons once a week too.  She is in level 1.

Isabella is growing up.  She is witty and independent and has a temper!  She is saying more words daily like "poon" (for spoon) and "g-g" (grace) and "woo-woo" (for Luke). She is obsessed with her shoes, feeding herself independently and brushing her teeth (as long as you run the water for her and she can play in it!)  Sometimes I look at her and she just warms my heart so much.  What a daily blessing and reminder of God's incredible love!  She too is in swimming lessons with me (parent and tot level).  Yes, I am that crazy.

I am surprised how content and happy.  I am filling my days with activities that revolve around the kids.  I am not stressed with the daily happenings of work, or caught up in drama that can be consuming.  I have time to cook, clean, organize and coupon.  Sometimes my only worries for the day are finding new (or slightly used) shoes for Bella, or running a juice box up to one of my children at school for their lunches.  After my summer of worry and stress about working, I am happy...I am at peace...I am doing exactly what it is I am supposed to be doing. 

While this happiness is so wonderful, it hasn't come with out CHANGE.  Mark is now working what the railroad refers to as "THE ROAD".  He is traveling with the trains.  If you want a good idea about what it is that Mark does watch the movie Unstoppable with Denzel Washington.  Mark is a conductor and when he travels with the trains it is consider "his train."  He rides with an Engineer (who drives the train), but Mark is responsible for the communication to dispatch, and all the stops and moves the train makes.  More specifically...he is traveling to Pasco, Washington and back.  I am not going to lie...the money is good.  The schedule on the other hand STINKS.  Mark's schedule is basically...he doesn't have one.  It has been an adjustment...most difficult for Luke (who thrives on schedules).  It bothers him to not know when dad is coming or going.  I have tried my best to ease this transition, but in the world of special needs, sometimes you can't and you just have to deal.  That is kind of where we are.  I let the waves of sadness wash over him, and then I pick him back up (so-to-speak) and we move on.  We do whatever we had planned for the day, all while validating his feelings and thoughts about how much he doesn't like dad going to Pasco (which he will voice often).  Pray for him if you have the chance.  We all would appreciate it.  

Back To School Blessings!

Last Wednesday, the kids headed back to school.  I think I was more nervous than anyone else.  This has been truly a battle of my heart (the kids going to public school and me being ok with it).  Through all the uncertainty these past couple of months, one thing was always constant, that Mark and I had peace about them attending public school.  We couldn't explain it...and didn't know why...but it was PEACE.  

Wednesday morning, when we dropped them off, we began to get a glimpse of the picture that God saw the entire time.  Luke's teacher, Ms. Kari, is a general education teacher with a special education endorsement.  The school formed her classroom to serve students like Luke who are on IEP's.  Not only will Ms. Kari be with them the entire day, but usually a special education teacher will be in the classroom providing instruction as well.  This is moving from the pull-out model for services to the push-in model for services.  I am very excited about this prospect.  I also LOVE the way she is designing her classroom to fit the students and her homework policy is to help form her instruction and not for perfection.  I am excited for what this year holds for him.  

Grace's teacher is a jewel too.  Her name is Mrs. B.  She is cute and calm and organized, and basically if I could have cloned myself as a teacher....it would be Mrs. B.  It is a comfort to know that each day Grace is being taught by a teacher that has a lot of my teaching traits.  Grace already has lots of friends and was the "Star Student" on Friday.  I got some information on the PTO and I am thinking about joining to be involved with the school.

In other news...Miss Bella is eager to begin her school education and I found her one morning (after the kids had gone to school) up on Grace's bed reading her a book!  She is soooo funny these days and expressing herself with screeches, screams and grunts :) oh and a few words too!  She's been my work out buddy these days at the gym on the track...conversing with grandmas and grandpas walking the track too.  We also started her playgroup at the library this week.  She love the other "babies" and checked out her first book from the library.  I am enjoying spending some time with her.  I am really starting to this as a "gift" and an incredible one at that!!!!

Letting Go....

Sorry to have been MIA for a bit.  The bout of diverticulitis was more painful and took about a full week to recover.  I have since finished my massive amounts of antibiotics and have healed nicely, although they say it takes a full 2 months for things to be completely healed on the inside.  I was lucky to have gone in right away.  Now to work on prevention.

Even though I have been sick and not feeling the best it didn't stop this mama from going to our annual "Clark County Fair."  Sure I was slow and didn't have my usual energy but I wasn't about to let my kids down.  This past Thursday we took the kids to Long Beach to the kite festival.  It was AMAZING!  (pictures to come later).  I have never seen so many kites in my life!  Mark bought the kids each a mini kite and we went to a park and flew kites for hours.  It was the simplest trip but it was very much LOVED!

The kids are getting ready to start school in a couple weeks.  I can hardly believe that summer is almost over. They received their teacher assignments in the mail.  They start August 31.  Luke is going into 3rd grade and Grace into 1st.

This fall will be the first time in a long time that I haven't prepared a classroom.  You see...there is NO classroom, no job, no prospect of job.  It has taken me nearly 3 months to decided to LET GO of it.  To stop worrying and trust that I have NO idea what God's plan is, but I am TIRED of fighting, pleading and worrying about something in which I have no control.  I have had the most difficult time LETTING GO of my identity that is wrapped around the word "TEACHER".  Somehow I think LETTING GO of "teacher" is like LETTING GO of a part of myself.  But I decided that it is time to LET GO and focus my attention on Luke, and Grace and Isabella....and instead of being a special education teacher....I am going to the special education mom.  In some ways I feel that I am in a foreign land with NO classroom to plan, lessons to write, meetings to go to, supplies to buy for "my students".  Instead, I have bought supplies for my babies that will go off to school in a couple weeks, organized clothes, tutored subjects, bought lunch boxes and spruced up back packs.  I have started to make plans with my sidekick Miss B.  I have toddler library time picked out, and my big job of the year won't be transitioning 12 kids into my classroom, but transitioning an 18 month old to stay in the gym child watch so I can work out sans children. :)  I am already thinking towards fall, decorating for fall and slowing down to participate my own children's education rather than being the educator for others.  Perhaps by LETTING GO of "teacher" I can discover the BEAUTY of the gift being GIVEN to me.  It's time to surrender MY plans and seek NEW ones.

Decisions..Decisions...

The last couple of years, making any type of "major" decision has been very difficult for me.  I think I spend too much time making pro/con lists and trying to think of every issue or hiccup that could come up.  Because of that I talk myself into and out of things because I am afraid of "making a mistake."  No more has this ever been more true when it comes to decisions that revolve around "MY CHILDREN".  I often feel a HUGE amount of pressure to not make any mistakes with them because of their history/past and all the issues they are dealing with.  You have seen examples of my indecisiveness  in my posts especially regarding school choices for Luke and Grace.

Mark and I have finally come to a very long and difficult DECISION regarding the school placement for the kids for next year.  Both Luke and Grace will be attending our neighborhood public school.  It pains me to write it.  It means that I will turn down a $3600 dollar scholarship for them to attend private Christian School.  We were blessed to be given this scholarship through "His Helping Hands Foundation".  Even after the scholarship it will cost us almost $1000 dollars a month to have them attend Christian School (rest of tuition, gas, hot lunch, extras like photos or book orders).  The truth is....the DIFFICULT truth is....admitting we DO NOT have that money.

More TRUTH....it leaves me feeling like a FAILURE.  In my mind I think..."what is wrong with me that I can't give a Christian school education for my children? They deserve it.  They've been through so much...etc.  My parents provided a Christian Education for me."  The facts are really 2 things.   First, we just can't afford it. Second most private Christian Schools do not accept kids like Luke that have special needs.  Not because they are wrong...they just do not have the ability to meet their needs.

So...it's time to move FORWARD and to LET IT GO.  I have to accept now that this is our path, that GOD, the creator the universe, knows my children and their needs and will protect them and uphold them and put the right people in their paths that will help them in school.

I am reminded in the midst of our school decision, in the midst of unknowns about Luke's eyes and sight loss, in the midst of Grace's speech difficulties and every other issue running around in my head...that God is LEADING me..He hasn't FORGOTTEN me and HE  has me on his mind.

"Yet I will not forget you.  See, I have inscribed you on the palms of My hands." Isaiah 49

Luke's Bad Day

(Luke @ 3 years old)

I feel as though I am constantly fighting. Fighting for Luke, fighting doctor's office for reports, fighting government agencies, fighting with him to take his meds, fighting the school for them to do their part....I'm tired, so tired....and yet the fight continues. It has to continue. It doesn't stop.

Luke had a bad day yesterday. So, now I am fighting with teachers. I thought sending Luke to public school would get him the services he so desperately needed. Boy..was I wrong. I spent hours talking with school officials about my concerns. About how Luke was different, about how I was worried about him being bullied and having no friends, about his tendency to be bossy and argue. They "assured" me that they had strategies in place to help him deal with these things while they re-evaluated him. Yesterday, Luke was embarressed by his teacher in front of the whole classroom because of social skills that Luke doesn't yet have. He essentially got "in trouble" for having a giving heart. The teacher called me to tell me this and when she did I just laughed because I didn't see how it was big deal. She told me that she instructed class not to "accept" things from Luke anymore. Apparently, Luke gave away all the mechanical pencils I bought for him at Target. Big deal. When I talked to Luke about this, he told me "Mom I was so embarrassed that I couldn't even talk or look at anybody. I wanted to run away." My baby!!! I am the horrible mother that put him in this situation. Can you believe it? Because somehow I thought this was the magic class, the magic pill the magic whatever that would help him and solve all my problems. What a naive attitude right? Let's just face it...I was delusional :)

Now I have a little boy who HATES school. He cries, refuses to go out to the bus stop and even runs and hides. He cries to me "mom I have NO friends. Nobody likes me. I hate school." What is a mama to do? Here he has adhd, microcephaly, tourettes, glaucoma, sensory processing disorder, etc. and I fed him to the wolves. Mark and I have been round and round and discussing everything. What am I to do? How do I find something, some program that is a good fit for LUKE. My heart is breaking. I should be able to figure this out, but I am stumped. There is just one thing I know for sure. This can't keep going on. Something has to change, or my sweet spirited, loving little boy is going to be crushed. Help.