take two

Well here I am, aren't you glad.  I hadn't even known where to find this blog, it's been so long since I've written.  But my life has been hectic and writing brings me perspective, so I am going to try this again.  I guess it will be a little of this and that - ramblings on my every day life.  So I'll just dive right in.

Bailey is 7 and Taylor is 5.  Bailey is in 1st grade and doing very well.  She has Cystic Fibrosis but doesn't let that slow her down from the things she loves - attending church activities, playing with friends, swimming, Wii-ing, and just acting like a kid.  She has the most tender heart of anyone I know and I adore my first born princess.  Taylor is in pre-k, her 2nd year in a special education classroom at our local elementary school.  Just yesterday she was diagnosed as on the Autism spectrum, with PDD-NOS.  More on that later - that is why I am awake at this awful hour!  But she is a joy, a light, a firecracker, a sweetheart.  She also loves to play and have fun.  Her laugh is literally my favorite sound in the whole world - it's throaty, genuine, and if you hear it, you've earned it.  She is no faker.

I am still learning what is needed to be a mommy to 2 special needs kids.  My life hasn't exactly turned out the way I thought it would - not to mention my waistline.  But how can I complain with a view like mine - beautiful brown eyes no matter where I look.  But complain I do - in my heart, I struggle sometimes with the hand I've been dealt, mostly because I want everything for my children. When they suffer, my heart breaks into a million pieces.  I want HEALTH for them, JOY, LOVE, PEACE.  Some things that come so easily for other families, are hard-won for mine.  I still get jealous sometimes, looking at seemingly healthy, happy families - with multiple, no-needs children - and I don't understand why both of my girls have a hardship to overcome.

I can't talk about all of this without telling you that these are my emotions - and I am a VERY emotional person.  My poor husband, thankfully he finds humor in my moods.  But my heart and my head KNOW that this life is a gift from God - and He never said it was going to be easy.  But He DOES tell me to come to Him when I am weary, and He will give me rest.   He tells me that He has a plan for me and for my family, to not harm us, but to give us a future.  He tells me he died for me, so that I could have eternal life.  So I will get bogged down from time to time with the daily monotony of challenges, laundry, bills and child-rearing, but my hope is in Jesus, my Savior, and he does bring me peace and strength.

Our 3 cats are now fighting, which is code for "We know you're up and haven't fed us yet, so we're going to annoy the you-know-what out of you until you get downstairs and plop down some goodness for us."  I can smell the coffee brewing, which Kevin makes me for each morning, although he doesn't drink any himself.  No matter what else may happen today, I am starting my day knowing Kevin thinks of me the minute he wakes up, by making me that coffee.  That feeling tastes even sweeter than the Bailey's creamer I put in it - which is pretty sweet being that I got it for free (and more on how I have cut our grocery bill in more than half later too).  Thank you for bearing with me as I get this blog up and running.

Family Sunday

so today is sunday, which always means working in the nursery, church and family dinner.  Sometimes this day allows me to reflect on my blessings, sometimes it makes me actually look forward to Monday.  hmm.  anyway, today's sermon, given by the associate pastor, made me think about my role as a mother and how God is REALLY using this stage in my life to mold me into the person He wants me to be.  The person i currently am is a confused one...kind of like how i feel about sundays.  do i look forward to it or a little bit dread it?  if anyone ever reads this blog, forgive my ramblings but i'm just kind of thinking out loud, whatever pops in my head.  anyway, i am confused about who i am.  on one hand i am thankful to be God's child and i desperately want Him to take the drivers seat in my life...on the other i fight Him tooth and nail, out of fear of the unknown, out of laziness....as far as my mothering goes, He is WORKING HARD in my life - some days i welcome the work, i do the best i can, i concentrate on Him.  on others, i boo-hoo myself, i yell at the kids, i lay on my bed too exhausted to even smile at my husband.  so for today...what's my choice?  TODAY, i choose to graciously welcome my family into my home to serve them a meal and i encourage kevin to help out at church while i tuck in the girls.  i smile, i have patience.  i pray.  for today and tomorrow i will choose again.

Connections

I just watched a video from a Good Morning America show a few weeks ago where a dad talked about his son who was labeled as autistic, but the child has SPD instead...the dad crawled into the crib with his son and thought, this is therapy -- CONNECTION with my child is therapy.  Anyway, i thought of how the times i am closest to my children, i am IN their space, on the floor, doing something calm but playful.  At Sahara Sams on monday, taylor and i laid in the tube around the lazy river umpteen times and she was resting against me, playing with my hands, gazing into each others eyes.  CONNECTED.  there is laundry, phone calls, vacuuming, dishes....it all will have to wait.  i HAVE to become more connected with my girls - i hereby promise to lay around more on the floor.  I can't wait to see the progress, the relationship - i know it will be worthwhile.  and the chores?  who really cares anyway?  why do i?

Feeling good

As i write, i am watching tv with a fire going.  I am so blessed. The last week has been Easter celebrations and lots of family time - we have been really enjoying each other.  Taylor has been doing pretty well and she especially enjoyed our day at Sahara Sams, an indoor water park.  She has been communicating more clearly and has been able to calm down quicker.  I am so thankful we are addressing her needs and i think it's helping.  Tomorrow we have 2 therapy sessions, it will be a busy day.  We meet up with kevin's parents around 4:30 tomorrow and they are having the children overnight at their house, tatie for the first time.  We will pick her up if necessary but maybe she'll do great!  We are going to AC for a night out, yay i can't wait.

Bailey is doing well, she had a playdate today with an old friend.  I tucked her in tonight, a long tuck-in, and i marveled at how tall she is getting, how long her hair is - how she is growing.  What will i do without my baby Bailey?  will she leave me for her friends - probably and hopefully - i know that's normal!   But we are so close, i love my girlfriend time with her.  I love my girlfriends, i am so glad i had girls.  When we do fun things together, we put our hands out on top of each other and chant, 1,2,3 - Girls!! i always wanted a sister and never had one - i am thankful they have each other.

Thank you God, for the blessings of my family.  Please help me each moment of each day, to be the mom You want me to be, to be the wife Kevin needs me to be.  

a big fat red nose

So i have spent so much time crying last night and today that my face is swollen.  this life is just not what i anticipated.  do others have it SOOOO much worse?  yes.  but today at friendly's, after taylor's therapy and in a booth that i requested be as far away as other customers as we could get, i watched a little girl about tate's age act so -- appropriate -- that i was green.  i went through this after bailey's CF diagnosis; i had a hard time for several months watching mothers with their seemingly healthy young children and i was envious believing that they probably did not lie awake at night wondering if they would outlive their child.  i got over it, meditated on "Give us THIS day our DAILY bread" and celebrated her health each day.  really.  but i find i am going through the jealous thing all over again.  with an added element of 'not one special needs child but two...'

oh woe is me.  shut up brynn.

i want to be in the light...

so today i was driving in my freshly cleaned van (love that) by myself while the girls were in school, listening to my fave radio station, K-Love.  It's a Christian station, and it brings me such joy, conviction...not to mention i love the songs!  well, today they played DC Talk's 'In the Light'... 

"what's going on inside of me?  i despise my own behavior.  This only serves to confirm my suspicions, that i'm still a man in need of a savior...I want to BE IN THE LIGHT, AS YOU ARE IN THE LIGHT, I WANT TO SHINE LIKE THE STARS IN THE HEAVENS....OH LORD BE MY LIGHT and BE MY SALVATION, CAUSE ALL I WANT IS TO BE in the LIGHT."

i was driving, singing, crying, longing to be BETTER, to be more like my Lord.  This morning kevin was gone, he had a work overnite in NYC and the girls were really acting out - leaving for school only 5 minutes late was nothing short of miraculous.  But of course that was also because yours truly here wore her standard issue of little make-up, hair in pony and sweats.  uck.  anyway, they had a great time at school celebrating Easter, which was great.  then off to another assessment at Sensational Kids, this time for occupational therapy for taylor, and although that went well in the sense that her therapist Miss Judy thinks she can help her, she doesn't know if taylor may be on the Autism spectrum - possibly Aspergers, high-functioning.   no no no no.   Lord, please move mountains.  If taylor is autistic, be with us Lord.  HELP us.  Bring people into our life to continue to help taylor, to guide her in healing and coping skills.  tomorrow is behavioral therapy, hoping it goes well.  

i want to be in the light.  but it's hard getting there, through the Refiner's fire.  

It's getting better...

So the last few days have been interesting...a few highlights (or lowlights too) :

wed evening i went to a seminar at Sensational Kids, and learned more about Sensory Disorders.  Although Taylor hasn't been "medically diagnosed" yet we are certain this is what she has.  A therapist talked about how when children are on a sensory diet (not to do with food) they are more balanced and can handle life better...so i decided to start her "diet" with a therapeutic massage every morning, in the hope it would calm her better for her day.  Well thursday i did this, 45 min worth, and she had a FABULOUS day.  Not ONE meltdown!  Today she did not consent to her massage, but still had a pretty good day - i was thankful, esp because we began her day at the ear-nose-throat specialist.  she had to have a long tube put through her nose down her throat, which was horrific but 3 hashbrowns for McD's later she recovered from the emotional trauma.  The Dr said her constant nose mucus, coughing, and raspy voice (and here she is NOT the CF kid) could be allergies, the fact that she's screamed since birth, etc.  we're waiting on the allergist appt next week to know more.  trying to get T all fixed up and acclimated to planet earth.

Bailey melts my heart every day.  she is such a good big sister, her heart couldn't be any bigger.  today taylor wanted bailey's outfit ad bailey literally took the clothes off her back and said "of course sweetheart, i want you to have them!"  bailey also sobbed when i smacked taylor's hand and disciplined her for telling me to shut up ( a phrase she keeps trying out) and said i was breaking her heart disciplining taylor.  She also got a great report from school, which i always love to hear.

the lowlight - last night kevin met us at the mall after work for dinner and easter bunny fun...he was white as a ghost and could hardly walk and talk his lower stomach hurt so badly.  He ended up in the ER until 3am  to find out nothing's wrong - i think we actually prayed out a kidney stone.  i was scared, i love him terribly.

that's it for now - oh and tonight, family dinner at prospectors, my mom and kevin's family...a rainbow, big and beautiful on the way home.  Thank you God.