from one dragon mom to another...

please please read this article

Jimmy was given this article tonight at the boy's grief group.  Let me tell you that I could feel every word this woman said and the eloquence she used to explain where many of us have been is beautiful.  I get being a dragon mom, not many do, its tabu to discuss...but I knew at 18 weeks pregnant with Sophee that she would NEVER live a full life.  I knew beyond a shadow of a doubt that one day I would help her to Jesus's arms.  Can I please tell you that while I am typing this I am heavy handed...I was able to bring my sweet girl home, do nothing but cuddle her, love her, and rock her...I changed her clothes at least twice a day, she always had a bow in her hair, I pumped every 3 hours...all of this I did knowing she was going to die.  With the help of others I was able to spend my days and nights in the hospital cooing over her, loving her, praying with her...that was a blessing to be able to do nothing but love for 6 months...now that she is gone I am still catching up from the things that went left undone...the bills, the cleaning..and yes it has been 7 months! All of it...WORTH IT!!!!! I wish life could carry on like that.  I have a small savings account for my boys (small!) but you know what we get through one day at a time.  and there was somethings Sophee taught me that I may have never learned other wise.  One of the most important things is to cherish the small things, and to appreciate the normal!  I had no idea life could be ab-normal! Now you hear of ab-normal test result but an ab-normal life?  I am so grateful this Dragon Mom expressed herself...she says in the last paragraph " But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way arpund, and this is, I believe, as it should be.  This is a love story, and like all great love stories, it idd s story of loss.  parenting I've come to understand, is about loving my child today!. Now, in fact, for any parent anywhere, that's all there is."  I love her emphasis on loving her child TODAY! and her gentle reminder to all parents...that really that is all we have.  We get caught up in all the hoopla of my kid can, or my child will, or I can send my kid to _____college....but what happens when ab-normal knocks on your door...and all your plans go right out the window? There is nothing about my life that was ab-normal...then God gave me Sophee and I am so grateful that little girl rocked my world! <3

identity?!

I found myself in the midst of wondering today.  Wondering who was I, were was I going, what was I doing...I could only think that Sophee dying has somehow changed who I was, and now I feel like that 18 year old girl who wondered who she was and how she fit.  I have found myself uncomfortable with my hair color, my clothes...which I know may seem superficial but it is something you never think you will be effected by the loss of a child.  Sophee dying has changed so much about me.  I have greater and different appreciations then I did before, new fears and anxieties, new hurt, a deeper love.  Everything about my being has changed.  I hate looking in the mirror every day, looking into something I know nothing about.  Before I had Sophee I knew who I was, I knew what I wanted and now I am not even sure what I want to eat.  I think to myself that I don't want my life with and without Sophee to define me, but in many ways it does.  People who were friends are no longer friends, fears I never had suddenly exists, anger I didn't know existed suddenly exists.I have to keep going back to one thing...I have His child.  I am an heir to the kingdom of the King.  I also can't help in all of this confusion to think that maybe God has stripped away my identity so that He can begin to reshape and remold me.  There is nothing fun or exhilarating about being in the fires of the kiln. I logically know that at the end, I am going to be closer to Him and my transformation will be in the conformity to His image, but while I am going through all of this I can't help but think "how bad this burns."  I have good days and bad just like any other person.  Just some worse then others.  and maybe today is just one of the not so great days, but I wake up feeling the same way every day.  I have never had a problem engaging in conversation with a stranger, much less someone I know...and I find it difficult to speak any more.  Almost like what I am saying I don't believe, or so uncomfortable I want to crawl out of my skin.  Anyhow, I know the Lord isn't going to take me anywhere He isn't with me nor is He going to lead me anywhere He isn't going to keep me.  I know He loves me and all He wants is what is best for  me...and sometimes my idea and His idea of best are a little different...and I have to stand in a place of surrender.

Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.   James 1:12


here is a song reflecting some what how I feel today

realizing...

    All I can say is I hope it isn't too late...I have sat now feeling angry, empty and uncertain...and I know this is not what God intends for me.  I have come to know a not so beautiful truth...Life and its circumstances have really taken root with bitterness in my heart.  I sat tonight in church...our message is #Savorthefavor...it is about living in the "favored zone of God."  I sat tonight listening to Pastor talking about people who are angry all the time and poverty-minded (those who believe they will never be more or have more) but how God does not intend this for me (or you) living in this shadow of curses.  So for a breif moment if we thought about becoming "favor-minded" then what might happen?
    You see we can't just expect for the Lord to bless us...we have to expect blessings and then in return return the blessing! Sort of like a "pay it forward" I saw on the news a while back about people who would go to starbucks and start a chain reaction, if you will, of kindness.  They would purchase the coffee for the car behind them..then the next person would do the same, and the next, and the next...So what would have happened if the person who received the coffee didn't purchase the coffee of the car behind it?Well number one the chain would have been broken...number two the blessing would have came to a screeching halt.  So when the Lord blesses you, do you in turn, go out and bless Him or others? Or do you hoard the blessing? 
    If I chose to hoard the blessing I am going to be the one who ends up missing out...I am going to miss out when Jesus days...no more blessings for you my greedy child...I do not want the Lord to stop blessing me....
In all of this I had a few thoughts...1... I have somewhere along this journey forgotten what a blessing God gave me when He gave me Sophee....that she wasn't a punishment, but A BLESSING!  The Lord chose me to love that sweet baby! To be her mother, her voice, her care-taker...and He didn't take her to hurt me...I don't know why He took her, I can ask myself all day...why me?But all that matters is HIM!  I want to bless the Lord.  I want to lift up my hands! Glory is risen and He did not come walk among us and steal sin from us to live under a curse, to be poverty-minded, or angry! 
    The second thing I realized is that I have been so broken from life...then there were people who said things to me along the way that was like salt in a wound...and I have put my guard up...keeping so many at bay. I have been ANGRY! I have been so angry.  How could have this person said such a thing and called themselves a friend? How could they?  I have let them consume more space in my heart then Jesus and my love for Jesus!  I have given them my power!
    What if I choose not to be angry? What if I go and speak life and favor into my life, my children's lives, my husband's life???  Am I bold enough to take this challenge? I want the favor of the Lord to make me shine!  I heard something tonight at church that made sense.."you can't have a larger life, without a new attitude"  He can't pour Himself into me without me pouring into Him! 
    As service came to an end, and the tithe and offering bucket began to be passed this song was played...http://www.youtube.com/watch?v=j1N3zac7648  I had that overwhelming love I had for Jesus...I knew I wanted my heart cleansed...so that I could fill it with His word and begin to meditate on it day and night..I want to read it, I want to follow it, I want to crave it!  I am tired of this place...Nothing can shut what the Father has opened..nothing can lock what the Father has broken through.
    All I could hear was "Sons and Daughters of the KING lift up your voice and sing"  I want Jesus to restore my soul.  I want to be in Him!  Not stuck in anger...WE HAVE BEEN SET FREE!!!! Please listen to the link as you read my blog, or read my blog then get up and Praise Him with your worship.  I want to claim by the way I live my life, how free I am because love cam e and walked among!

Romans 12:11Or but serve the Lord with a zealous spirit; or but let the Spirit excite you as you serve the Lord.

A beautiful design!

I have a lot to blog about but it is time to get the kids from school!  I wanted to quickly share a woman who has captured the essence of grief in her wearable art! http://smallbirdstudios.com/2012/01/03/wendy-layne-giveaway/
Wendy Layne has done something I have spoken out about before...here in the U.S.A. we don't practice tradition like many other countries or communities when it comes to grief and loosing a child...there are all types of different traditions throughout the world so that the community at large knows this person is fragile and broken! And to be gentle with that person, as they are hurting, and the slightest thing can be too much!  Well here we have to carry on with daily life, go to the grocery store, return to work and so we go about and blend in wit the rest of society...all the while the person in the line at counter of the grocery store has had a bad day and wants to take it out on you or voice their opinion about something...not realizing it could be the one comment that pushes you over the edge!
I have thought many times after Sophee passed away (which is coming up on 7 months) that life would be easier if I had it tattooed on my forehead that "My daughter died in June)  or wore a shirt every day saying "Proceed with caution...my living daughter just died and I have empty arm syndrome and a broken heart!"  But that isn't reality and the fact is so many have been unaware of my situation and it has sent me over edge, however I can not walk around saying "please don't be mean to me, my daughter just died and I feel raw!!!"  And at that I am not sure how many would change their behavior or reaction because of it either!  Wendy found a way to let everyone be able to see...and take heed with this beautiful piece of art that is a necklace of a heart stitched together very loosely and then taken the word FRAGILE and placed it over the heart!  That is exactly how I feel most days...if you accidentally snag one of those strings my whole heart is going to unravel!  What a beautiful thing it is to be able to express yourself in a beautiful way...Thank you for sharing this!

Sunday again...

Looking for a reason So not only is it Sunday Sophee girl but tomorrow will have been 6 months!  Six months of agony, of heartache and pain. Trying to find my place in this world.  Trying to find peace and joy for the boys.  I can not believe that Christmas is only 2 weeks away.  I went ahead and told Santa to bring you a little something that boys can tinker with when they are missing you! On top of all of this it was a long weekend...it was Riley and Jackson's birthday...so a party Friday night and then another on Saturday and the Riley had dance competition today(which lasted something like 6 hours!) She rocked, she really did and she has a passion for it...but the place I found myself in of that wishing I could one day put the glitter and hairspray and make cute little dance outfits and headbands was almost unbearable.  I would love to put you in dance and watch you shine...it is sweet watching Riley light up.  She loves dancing and has a passion for it.  I love the bond that sisters share.  It is so sweet to have a little brother and sister and only wish there was more time I could spend with them...but I have the boys and they have their own activities.  I so desperately want to be a mom to a girl...I know one day when the boys grow up I will have 3 daughter in laws (and can only hope they will love me) But I want you.  Which is not an option so another baby is all I can hope for and I just have to pray that the Lord wants for me what I want...sometimes He says no and that is a very scary thing for me....We went to church last night and we listened to the Pastor share about how facebook is taking time away from our special people...those closest to us.  Our husbands, wives and children becasue we are too busy on phones or computers...I don't want to be that mom...Anthony will be out of the house if I am lucky in no less then 9 years!  Time flies...I want to invest in those around me.  I want daddy to know he is loved and supported and the boys to know they are more important then a "hold on", while I finish checking someone else's page...He also spoke of feeling important because we have the info first and how a family had had a family member pass at 3:00 am and that the family woke the next day to read this member had passed becasue it was all over facebook and was immediately thrown back to the day you died and how boundaries were lost that day...that we were trying to make your last hours, minutes here with us as quite and peaceful and memorable as possible and the phones wouldn't stop, and how I have lost friends becasue I didn't call them first after she passed or haven't healed fast enough...I don't need space, or tough love just simple unconditional love becasue I am going through the valley of the shadow of death...the Lord promises us deliverance but not in a certain amount of time...Jesus when Lazarus died could have gone to those who were grieving him and said to them "Hey you dummies, quit crying he is going to be raised from the dead" but he didn't he went and he grieved with them.  Life looks a lot different, my tolerance is much lower and sometimes have lost my filter but fake is something that bugs me...genuine politeness is one thing but to walk around smiling and shining when I feel a shadow cast upon me isn't all that real...wouldn't you wonder if mommy actually loved you if I carried on with my life as I did before I ever even knew you existed?  I am not that woman anymore, God didn't bring me through this to be the same woman but to grow me, to mold me, to shape me! Someone once said to me they loved me and were just waiting for things to get better in my life before they had anything to do with me...so how is someone who isn't talking to me, calling, writing, coming by going to know when "things get better?"  No! No one has the right words to say, no prophetic words that will heal me or take away my pain but the simple knowing that you are there and you are thinking and praying for me is all that matters...  People need to realize I expect your life to go on as is was before, but you can't expect mine to carry on as it was.  I have forever been changed, Sophee you grew me in a whole new way, you made me aware of so many things I had never been before.  You were an angel sent to help grow me spiritually!  You gave me life lessons most will never have which makes me a more compassionate, sympathetic, empathetic understanding person.  I will never regret that!  I will never regret my greiving you, you were a part of me...not just that place you hold in my heart but you grew in my womb....I carried you as the Lord breathed the very breath of life into you...why would I not want to grieve such a special person...you were a miracle.  I had another angel momma say to me recently that when people say to her that "her child is in a better place" she wants to just say to them, well then let us send your child there and see how you feel...see if you feel they are in a better place.... Of course believing in Jesus I know you are with Jesus walking and dancing on streets of gold! and would never desire to return here but it doesn't fill my empty arms or heart...they are still missing you!  Oh Sophee I love you and you have just helped me realize what is important and what is not...pretending that any amount of clothes or money would fix my heart...pretending life is great, smiling when I feel  like shedding tears and hiding from the world becasue my grief is unacceptable...it is not worth it!  Nor is the silly feuding that has carried on for years...if you want to continue to hate me, fine so be it but understand that you have no place in our live and don't be angry about it.  If you yell and scream and cuss every time we see you, then we don't want to see you.  Your daddy, your brothers and I have an appreciation for things some don't and never will...not saying that makes them less of people but it does allow us to help others, draw boundaries (that many will judge) and I have always been careful about what I blog about knowing that family and friends read it and don't ever want to harm anyone but there comes a point when serving the Lord and protecting our hearts is the most important even if that means you can't be apart of our lives...it doesn't mean you aren't loved, love doesn't mean letting someone walk all over you...For crying out loud even the Lord allows consequences for our actions to happen...so why as people can we not draw boundaries and say "No more"  This blog has been all over the place and it is becasue I haven't been blogging enough!  This is the only way I can talk to you, forever! and I deserve to say whatever I want...if I have to seek the Lord's forgiveness after writing something then that is between me and the Lord!  Shut your eyes and close your browser!  Sophee I love you dearly, you are our girl, our angel...not many ever get to live a completely clean (never sinned or harmful) life but you did and there was something to take from you...lots of somethings!  You had the strength to live 201 days the doctors aid would be cruel and inhuman!  But you lived it loved and loving!  I have to say until you are the parent or family who wakes up to the Lord saying I am taking my child home and begging Him not to, but knowing you have to hand your child back over to Him...then you just don't even get to wonder about me or my family!  We have done everything we ever have including fundraising for other families...out of love for our God and our daughter! Sophee I love you...Blessings my sweet child...blessings sweet Jesus~ I love you!

I just looking, trying to find my place in this world again...
what is my ministry
why did the Lord bring me through the heartache and pain
can you hear me asking you to place me where I belong
I want to bring you glory
that I know you can bring us to defeat a 50 foot tall and 50 foot wide wall
but where can you use me
you wouldnt have brough tme thruogh all of what I have been through breathing if it wasn't to glorify your kingdom
now help me Lord find my place again
help me know where to go and what to do
who to help
and how to help them
Lord you are our Lord...if you are for us who can stand against us?
Now take me as I am broken and in pieces...wishing for my heart to be put back together
and mend me and shape me as you see fit for your kingdom and your glory

a quick post...

I wanted to post something real quick for those who had left ugly messages my last blog...I  hope that you who said you weren't reading any more actually are...here is something another mom who lost her daughter posted today...You don’t know how I feel; please don’t tell me that you do.
There’s just one way to know–have you lost a child too?
“You’ll have another child” – must I hear this every day?
Can I get another mother, too, if mine should pass away?
Don’t say it was “God’s will” – that’s not the God I know.
Would God, on purpose, break my heart,
then watch as my tears flow?
You have an angel in heaven – a precious child above.
But tell me, to whom here on earth shall I give this love?
“Aren’t you better yet?” Is that what I heard you say?
No! A part of my heart aches and I’ll always feel some pain.
You think that silence is kind, but it hurts me even more.
I want to talk about my child who has gone through death’s door.
Don’t say these things to me, although you do mean well.
They do not take my pain away; I must go through this hell.
I will get better, slow but sure – and it helps to have you near.
But a simple “I’m sorry you lost your child” is all I need to hear.

I have more to post later...including some sites of what not to say to greiving parents, the fact that my feelings are my feelings and for those who constantly walk around offending me with their words I usually keep my mouth shut but sometimes I just can't...I could have responded to my ugly messager last week who has a toddler...well lets send your daughter to heaven and tell you you you need to heal at "god speed"! I also want to share a devotion that was sent to me becasue this person had commented on how I had said about wanting for people to gift in Sophee's name, or start a tradition in her honor...a godly woman has asked the same 13 years ago!  I am not crazy...and I guess that is why I am typing this becasue I had taken the last couple of weeks off from facebook and my blog, questioning myself over and over had the things I had said been offensive and hurtful and should I apologize....I am not crazy or have I done anything wrong for missing my Sophee and wanting and wishing and praying! That these two people in particular were offering me tough love...I don't need tough love right now, I need real friends who offer unconditional love! But one of these girls I actually thought was a wonderful friend so I pondered and prayed about her words...but the Lord did not impress any of what she said on my heart as truth...so with that said I also have a place in my heart for grace and giving forgiveness.... My little brother and sister turn 7 today and I have to shower for their birthday party later...so until I return later...have a blessed day ...Sophee I love you, Jesus I praise you! Blessings~

an ugly message

I received an ugly comment on my blog tonight and they informed me of how they no longer would read it which was interesting becasue it was someone whom I already blocked from facebook and have no other relationship with! I am hurting..its my first all coming at once without Sophee and so maybe my feelings are not graceful but they are mine and all of it is a part of the greif to get to a place where the pain is bearable...this person has said several times that she hope I heal soon from Sophee's death...hey p.s. I will always have a scar! And birthdays, holidays may aggrevate the wound.  I am so sorry to the Lord only for not always being graceful...but He loves me and He forgives me.  I was thrown off by the fact that Sophee's first birthday had no baby in a high chair, no gifts on the table and no candles on a cake.  I am very grateful for though those who prayed for us thru the week...it got us thru it ALIVE!  and our hearts are pieced a chip back (with glue and all around the edges) knowing that we are going to get through all of these tough times!  I am always thrown off when someone says to me I should be healed or Sophee is in a better place...I believe in Jesus Christ!  Of course Heaven is a better place and I am sure she doesn't want to be back on this Earth but for a grieving momma...simple statements that say I am thinking of you or praying for you are all that is needed sometimes!  My feelings are raw and certain things do bother me...such as a comment someone had left about how sick Sophee looked (this was even after she was home from the hospital from her heart surgery) and that they were glad she was no longer here...I know they didn't mean harm by it...but I commented to what the person said about at least she wasn't suffering anymore...how many of you Trisomy mommies would have thought your child was better off becasue they look sick to someone else...To us she looked perfect and good and they hadn't even ever seen the bad...and the friend who was actually a real friend just took Sophee's picture down and got angry at me! Until you have lost a child judgment should be far from you!  Even then everyone grieves differently! The only hope we have is to keep our angel's memory alive in the hearts of those who loved them and that one day we will be reunited with them.  I got a thoughtful card, several beautiful messages on facebook from lots of people for warm wishes for Sophee and how much she meant to them, even got a few gorgeous gifts and Sophee got balloons galore and flowers at her grave! I don't care if I ever receive gifts on her special days but it is a gut wrenching pain knowing that she doesn't get them...one of the people who I am referring to would have been at her first birthday with a card I am sure but she didn't even say happy birthday on my or Sophee's wall...My mom wouldn't have been out of town, she would have been here to celebrate a miraculous first birthday! And I have the right to grieve all of that! And grieving all of that is part of my healing...and I no matter how long will always miss the baby I held and cuddled and nursed! So for those of you who don't like my blog please do not read it...I don't want to hurt you and my blogs up until this one have not been directed to anyone...just my plain and ugly emotions!  People can handle the happy feely stuff but the ugly parts about life, such as choosing em-bombing fluid for your child or not...or how to pick the perfect bow to go on her in her casket...hush Summer hush!  They actually have written books about what not to say to a grieving parent!  Published books!  So why is it that I am targeted for saying that something bugs me? It's my life, I try to tread lightly and again I am not always graceful!  But to want to start a war on a blog of a dead child is insanity! Quite reading!  Thank you to all of you who just love me  no matter how ugly things seem!  I love you Sophee~Blessings to you and Jesus