Why I will write about Bub

Today I read on another blog post that The Atlantic posted that a staggering 85%  of women with a diagnosis of Down Syndrome abort their baby.  It makes my jaw drop actually.  But it has brought me to the reality that I must do something.  I want to think that most folks today look at my son and are amazed with how much he is like most other kids.  That they do not see his disability.  But there is the reality that people do look at him differently  and that somehow his life is not as valued as theirs.  So what's  a mom to do...

I am determined to do something I have long wanted to do...I am going to write.  At this time I don't know what I am going to write...but I know that I must write.  I need to get my story down for others.  I need to share the day to day life that God has given us.  I need to share what a blessing my son is.

A few months ago I found a blog that I love...www.theworksofgod.com.  

Reflections on the sovereignty of God over disability, disease and suffering, for God's glory and for our good

The entire website is phenomenal.  It is tied into the Desiring God website of John Piper (also a good one.) One blog post has been floating around in my head since I read it...

The title of the blog post was this..."God has given you a story for the good of others."

The blog post writer John Knight was in Chicago  for some Desiring God events.  There he met multiple people who had experienced different types of suffering, disability and pain.   He says he was " reminded that our unique stories give us unique opportunities to point people to God."

In all their stories there was a sense of joy in the midst of the suffering.

HE ends by saying..."And I was reminded of this simple truth: God is glorious and good to us in ways we cannot begin to comprehend.  Let us use our stories to point people to the source of hope and to encourage each other, for God’s glory and for our joy."

So you see I have a story to tell that could encourage.  I have a story that shows God's glory and our joy almost everyday!  That is why I want to tell my story.  And for those moms who ask "why me?"  I can say, " you areblessed that HE chose someone in your life to use for an avenue for His glory."  For those moms who say "I can not do this."  I can say, " exactly  the point...He needs you to depend on Him."  For those moms who say,"their life will be so hard."  I can remind them that this child will challenge them to learn to trust Him more than they ever had before.

I want to be able to tell them  I was where they are once.  I cried and asked God why did he give me a child that is broken.  I need to tell them I hated myself for even thinking that.  

They need to know I wrestled with God.  But my wrestling brought me to a place....a better place...one of acceptance of what HE gave me and now I am trying to plug along and enjoy this gift for what it is.  Somedays it is still hard...and I want to share it...sometimes I want to just throw in the towel....and other moms need to know that!   But most days I can look at my kid and see him for the special gift that He is...one that God created for His glory.  Perfect in every sense...

Most times our  life does not seem to be that important to anyone.  But I think it might be time to share my story so that His glory is revealed in my life.

Mother's Day Madness

Another Mothers day has come and gone. There is always quite a bit of emotion tied up in this holiday for me. Facebook was filled with pictures of mom and daughter pictures. Not that I am not happy for those people. More like jealous. No pictures of me and mom unless I find a picture from over twenty years ago. Okay after losing my mom most mothers days were rotten.

 So then I had kids and mothers day got better but not without some madness. I think there has always been pressure for me to have some sort of perfect mothers day. Trying to make up for the miserable mothers days in the past.

 This year we went out to eat on Saturday which at least took pressure off of Sunday. However then Sunday was met with kids who were grumpy and grouchy ...not really trying to make this day very special...since for them the "celebration" had already happened. They did however pull the mother's day card when trying to get out of going to Sunday school.

 So the day continued with mundane house cleaning ...which left me grumpy and grouchy and then a walk which could have been nice until we tried to take pictures...oh my. Could it have been more painful?

 I have to mention though how much Brian tried to make it special...a great dinner, a wonderful gift and flowers... And the constant reminder to all that it was my day.

 Now, as the pressure of the day has passed here is what I look back to see...
 A husband who works hard everyday to make me feel special...and especially on Mothers day.
One child who stopped playing outside to work really hard to finish the deck wash to get rid of pollen that was driving us all crazy.
 One girl who said at night she must tell me something that would make me cry....that she loved me "forever and a million times and that I was the best mommy she ever had."
A child who could say "happy mothers day" for the first time.
A child who woke up on Monday and gave me a hug instead of being grouchy for the first time ever...on a Monday morning.
A child who kisses me goodnight EVERY night.
A child who asks me multiple times a day..."will you play with me?"

 At the end of a mother's day...these things are the things I see and when you get down to it...what I see as the "ideal" mother's day is just something in my head. Sure I would LOVE to have my mom here to see them but there is so much God has given me I just need to step back and take notice and consider myself truly blessed! I was struck by this perfection that I wanted...this perfect day that didn't happen. A lot of things are not perfect in this life because we are not even near perfection but there is hope that God redeemed us and is sanctifying us and making us more like Him. We are not bound to the perfection of the law. Christ made it possible for us to draw near to God even despite the imperfections. No..we will never even be close to perfect and neither will our kids or our husbands or those around us or even our "special days". But praise God he is working in us every day.

 Hebrew 7:19...(for the law made nothing perfect), and a better hope is introduced, by which we draw near to God.

 By the way here are some pictures of my day...what is funny is that we were so frustrated with them for not wanting to take the pictures but a few of them aren't too bad...although as you can see Bubs was the least happy to stop the walk for a photo session.

ReMemories

ReMemories...that is what gracie says when she has something she has"given up" but still wants to keep. She says she will keep it for "rememories." I think that is a cross between remembering and memories. There are so many moments of life that fly by that i want to take more note. Things I want to keep etched in my mind for memories. I jot these things down from time to time because life can just pass you by so quickly...I mean Samuel is now as tall as my shoulder.

Other ReMemories are how Smokey taps my face with his paw when he wants me to keep petting him.

 Like how Bubs tells me " pretty mom" when he sees me get dressed up.

 Like how Gracie told me a secret that she really gets nervous before her dates with Daddy.

 How Gracie calls Samuel Sam and he doesn't mind

 How Samuel is looking so old now and like a big kid but yet he still likes to take the time to sit down and talk to me.

 How Gracie calls me "mom girl" and gets goose bumps when Samuel tells her she is pretty

How Gracie and Bubs know all the Rapunzel and Flynn Ryder parts of Tangled

How Samuel will throw Bubs as many balls as it takes for him to hit the baseball and then will "pretend" to miss so his brother can score

How Samuel says he will attempt to eat strawberries with Bubs since he will have to do that next at "eating school"

How Samuel will find me a blanket if I even look a little  bit cold


How Bub has to kiss me on the lips every night before he goes to bed and likes me to snuggle close while he falls asleep

How my husband works really hard all day and then comes home and takes the kid out to get them "out of my hair" for a minute

How he will watch a "chick flick" with me even if he rather watch something more manly

How he keeps his beard because I love it

The list could go on and on...it just reminds me how truly blessed I am and I forget to take notice some days.  Days like today really make me sit and think...thinking is a good thing.

Thank you Lord.

John 1:16

New International Version (NIV)

¹⁶ Out of his fullness we have all received grace in place of grace already given.

So proud of my girl...

Today was Kindergarten registration for Gracie. What a huge day for both of us. Of course we have waited officially as long as we can...she is five and we have to go next year. She was so brave. Now mom not so much! Of course the second she went back with the teacher for her "test" I sat and cried. She is my sidekick...following me everywhere I go. Needing to know where I am every second...although it can really feel like I never get a break I know I will miss her little shadow! Last one to leave the little nest...last one to go through this...no more babies. It is a hard step but one I know I will be proud of. She did so well and such a big girl. I know she is ready is go. I just have to get ready for September...a new chapter for us both. After our hard day we headed to Dunkin Donuts for a donut. Love my girl...

Always cloudy on Good Friday

Amazes me but most times I can remember Good Friday is cloudy.  Interesting...since it was the day my savior took my sins to the cross, the day the Father turned his face from his son for the one and only time and the reason I  am totally broken before Him.  I am always so in awe of how very much He loves me and draws me in...with all my mistakes and baggage.  Thank you Jesus for your sacrifice.

Lyrics to Broken by Jeremy Riddle
To the cross, I look, and to the cross, I clingOf it's suffering, I do drink, of its work, I do singOn it, my Savior, both bruised and crushedShowed that God is love and God is just
At the cross, You beckon meYou draw me gently to my kneesAnd I am lost for words, so lost in loveI’m sweetly broken, wholly surrenderedYeah, yeah, oh Lord
What a priceless gift, undeserved lifeHave I been given through Christ crucifiedYou’ve called me out of deathYou’ve called me into lifeAnd I was under Your wrathNow, through the cross, I’m reconciled
Ooh, and at the cross, You beckon meYou draw me gently to my kneesAnd I am lost for words, so lost in loveI’m sweetly broken, wholly surrendered
At the cross, You beckon meYou draw me gently to my kneesAnd I am lost for words, so lost in loveI’m sweetly broken, wholly surrendered
And in awe of the cross, I must confessHow wondrous Your redeeming loveAnd how great is Your faithfulness
At the cross, You beckon meYou draw me gently to my kneesAnd I am lost for words, so lost in loveI’m sweetly broken, wholly surrendered
At the cross, You, You've beckoned meYou draw me gently to my kneesAnd I am lost for words, so lost in loveI’m sweetly broken, wholly surrendered
Yeah, yeah, I'm broken for youI'm broken for you, my Lord, yeahJesus, Your love is thereI am sweetly broken

Read more: JEREMY RIDDLE - SWEETLY BROKEN LYRICS 

God is good...all the time

IEP meeting is over...Benjamin will be remaining at Gordon next year in his regular ed classroom with support! Exactly what we asked for with relatively little drama.

 I feel quite certain the teachers and staff that work with Bubs everyday truly love my kid and it showed through at the meeting today. One of his teachers even stood up to agree that some of the things that happened at the last meeting were wrong and not legal. How awesome is that! There really wasn't a whole lot to fight about. My wonderful husband was well prepared and had just the right mix of composure, emotion, and a little anger...but all in all it went well!

 We so thank all of you who prayed for us (and we know there are so many of you) ...for our kid...and our meeting...coming on the eve of WORLD DOWN SYNDROME DAY it couldn't have happened on a better day! God is so faithful and He has proved again that He truly has my kid in the palm of His hand. The only slightly funny thing was during the meeting the school nurse called me. I left the meeting to find Bubs and his favorite girlfriend. Apparently he was hit in the face on the playground by a soccer ball and we lost another tooth.

He wasn't really concerned or worried about it...he had changed his bloody shirt and then he and his friend were determined to go find the tooth in the football field.  Obviously that was to no avail...but here is his note to put under his pillow tonight.

"Dear tooth fairy I lost tooth
soccer ball
money please
love ben"

That kid...he gets to my heart everytime!

FEAR

I will say that I am afraid of a lot of things. One of the reasons I struggle with anxiety the way I do is because of fear...fear of death, fear of illness, fear of rejection, fear of bugs...the list goes on. I have struggled with anxiety all my life. It hasn't been until the last few years I started getting some help. The help was in the form of medication. If you have a strong opinion on medication for treatment of anxiety then it might not help you to read this. Summer before last I started having panic attacks. If you have never had one I cannot really describe it...just take a feeling of fainting and add chest pain that makes you feel like you are having a heart attack to shaking and then nausea...sometimes vomiting...sometimes other issues, sometimes a feeling that you know you are dying. But...it is the scariest thing that has ever happened to me. It usually involves something lacking in my diet or dehydration or STRESS (not like I have much of that or anything). Some people say you can get better with more praye and believe me prayer is involved!  but I knew I  needed to get physically better for my family and I am convinced God led me to this decision. Believe me this is all really hard to write and hard to admit and the first time I have told many of you but...my family was more important than me staying off of a medication that could help me. I feel like for the most part since medication I have been stable. The last few weeks have been trying...we have ALOT of stuff going on with the school involving Benjamin's placement...that might need to be another post... But somehow getting this down and admitting that I need help is my help.

So back to how prayer and my God help me daily... my husband sent me this article recently written by Josh Wilson, who sings the song "Carry Me." I need to remember this verse daily "Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let you requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus" (Philippians 4:6-7). I need the peace of God to guard my heart and my mind, so every time I experienced a panic attack, I can pray that. I need Jesus.

 But as much as I struggle with fear and the unknown and how will we deal with all "bub's" stuff...I am amazed at what others will do our of fear.  I ran across this article...apparently fear did take over in a family in the southern province of Adana. Hatice Buzpinar, after being told that one of her twins had Down syndrome agreed to having an injection given to the fetus with Down syndrome which would stop the growth of that fetus in it’s mother’s womb. I cannot imagine having the ability to agree to kill your child unless you are consumed with fear. That’s a politically correct way of saying it would kill the unborn baby. That is exactly what it did and two days later, Buzpinar began experiencing abdominal pain. Taken back to the hospital, doctors decided to remove Buzpinar’s uterus and the fetuses inside it. The surgery did not go as planned, and Buzpinar died of a heart attack.

 When I think about my fears I honestly cannot imagine being afraid of something so much I would kill something or someone.  How can someone look at my kid and then out of fear want to kill others like him. It makes me sick. I know my fear and panic attacks can cloud my judgement but honestly how could you kill your unborn child when you haven't even met them. Please never be afraid of my kid and NEVER be afraid of something that it so clouds your judgement that you would do something out of the ordinary. This leads me to something I have been wanting to do a long time...to write! To write about what I have been through and how this is points me to God all the time

 I Thessalonians 5:14...And we urge you brothers to admonish the idle,encourage the fainthearted, help the weak, be patient with them all. I need to reminded...others need to be reminded...that God is glorious and good to us in ways we cannot comprehend. My story needs to point people to their source of hope and my only source of hope for God's glory! So...when will I get around to it...I would love to do it sooner than later but it may come in spurts. It is something I want to do for others and for my family who needs to understand me and how God (along with my life experiences) has changed me and made me the woman I am today. All glory be to God.

 Check it out.. http://www.youtube.com/watch?v=9huooelamNA