Saturday, October 11, 2008

Some of Ginny's recent thoughts

Ginny has been doing some writing & blogging, but she has no desire for others to actually read her thoughts. The joy for her is solely in recording them. With that said, due to my begging, she allowed me to share a few on here. Oh yeah, and she doesn't capitalize.

the safe myth
(friday. august 29, 2008)

my in-laws are wonderful people. not long ago the family went out to this local mexican spot to grab some dinner. the whole group was there: my husband, his parents, his sister & her 2 little girls. as is routine in restaurants, we got seated, the waiter took our drink order then made his way back to take the meal order. then, as is routine with my in-laws, my mother-in-law pulls her purse into her lap & begins to search for it. my father-in-law is looking, in anxious anticipation of it. it is of vital importance to their dining experience & i have never seen them eat out without it. then, she finds it & sets it as a centerpiece on the table.
the travel size bottle of anti-bacterial hand gel, claiming to kill up to 99.9 percent of germs.
she coats herself with it, then he coats himself with it & they attempt to get everyone at the table to coat themselves with it. there truly is nothing like the aromas of alcohol & sizzling fajitas colliding together. i politely decline.
i can only speculate on how the restaurant gel routine came about. maybe my father-in-law saw a very convincing commercial or possibly my mother-in-law had a friend tell her of the preventative powers of the gel. regardless of how they got there, they have their gel. i guess we all have our gel. something that makes us feel better about the inevitable "germs" that are out there in the world. i would venture to say that for most, the deep-rooted issue of the "gel" is one of fear intermingled with control. we fear something, something we don't like or would be unpleasant for us & that fear leads us to think we just have to control the situation to make it right or clean or safe or healthy or better. it's sort of like when we learned about "if-then" clauses in grade school.
if i put on this hand gel, then i will not eat germs.
if i have a net on a trampoline, then i can bounce & not get hurt.
if we pass laws against abortion & homosexuality, then the country will be morally "safe".
if i eat right & exercise, then i will not get cancer.
if i study & search enough, then i have it all figured out.
i have no problem with any of those things. they are wonderful things. safety nets, hand gels, healthy lifestyle, knowledge, laws speak of responsibility & stewardship, both of which i am a huge fan & both of which honor God. my issue is not with the "if"s, but with the "then"s. we have this tendency in our western comfortable culture to hang our hat on those "then"s. everyone feels above them, the harm, hurt, accidents, pain, sickness, death that is a natural part of our mortal lives & the fallen world in which we live. we feel above it all because when the fear of those things creep in, we go into super control mode. more hand gel! taller nets! a newer vitamin! harder helmets! i can control this fear! i can make my world safe!
the truth is that the Creator of us, of the universe, of all that we are & see & experience is the only One in control. He is the only one that redeemed what went wrong in the garden on the cross. He is the only One that sees past the momentary "unsafety" & hurt to the character being built in us in adversity. not us, we can not make all things right or safe & believe a lie when we think we can. only One can....and does.
i am no expert on the matter & in fact more times than i'd prefer, i give into that sneaky lie. for instance, nearly 3 years ago this "if-then" statement was floating around in my mind as matt & i thought about starting a family.

if i do everything right while i'm pregnant, then i will have a healthy baby.

a few months later, i was pregnant & i did everything right. i drank no caffeine. i didn't drink alcohol. i didn't smoke or get near anyone who did. i took a prenatal vitamin every day. i exercised just enough, not too much & not too little. i drank a ton of water. i ate foods rich in vitamins & folic acid & dha's & steered away from fast food. my showers were never too hot. i never lifted anything remotely heavy. i got plenty of rest, never lying on my back. i made sure to not stand for too long or sit for too long. yep, i went through every "if" you could think of or read about. yet still, God Himself held in His hand my "then". my "then" was not a healthy baby. my "then" was a sweet beautiful, amazing, sick baby boy who lived for 99 days.
thinking we can do enough to be safe & do enough for our kids to keep them safe is simply a myth. only One holds our days in His hands.

"for YOU have delivered my soul from death, indeed my feet from stumbling, so that I may walk before God in the light of the living". Psalm 56:13
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funny thing about fear
(monday, june 9 2008)

so it's been since february that i've posted anything. which, in reality doesn't matter because if all goes as i'd like with this little blog it serves as only a place where the nomadic thoughts in my head actually have a temporal residence. as strange as it sounds, my desire is for no one to even read it...

so, the big thing right now in my life is that i am currently in the process of growing another person inside of me. that's right i'm pregnant. i am 21 weeks, which i must always stop & do the math to know that i am just about 5 months along. in october, eliot will have a little brother or sister. it's been so long now since eliot was here with us. 1 year & 8 months since i have held him. not every day, but most i want to scream to everyone around of the great ache that is still deep within my heart. i step past pictures of him that line our shelves & am so weary of remembering. i want to touch him & be with him. i don't know what people think & i am not concerned with their opinions of me...but it seems as if they think that now that so much time has gone by & now that we are expecting another baby that everything is okay. everything is not okay. this pregnancy & this little baby forming in my womb is another leg of grief, of the missing eliot. it is no replacement. no words can express the difficulty & uniqueness of being pregnant with your second child when the first is no longer here. the journey is filled with hope & expectation, fear & anxiety, joy of new life intermixed with the lingering pain of life lost. this child will only know his or her older brother by pictures & the stories we tell of his amazing life. in a way this child will enter into life with some form of grief already there to deal with. what will it be like for him or her to grieve & miss eliot?

matt & i go into this pregnancy with a distinct past. we are 1 for 1 for having unhealthy children. we are 1 for 1 for losing a child. with those stats, some fear is inevitable. we fight it daily & pray, trusting, that God is fighting this battle for us. the funny thing when i think about fear is what in the world do i have to fear? nothing. i have walked through every parent's absolute worst nightmare and yet i sit here as somewhat of a survivor. a survivor whom Christ has carried through each moment. i realize that doesn't mean i want to walk through it again. i also realize it doesn't exempt me from walking through it again.

"for i hope in You, O Lord; You will answer, O Lord my God" Psalm 38:15

posted by ginny mooney at 11:30 am
_____________________
normal
(thursday, january 10, 2008)

after my husband & i had been married for a few years, we looked around at our lives & the lives of those we knew & were convinced of one sole desire. we did not want our lives to be "normal". what does that even mean? at the time, we had no idea. our thoughts were basically we don't know what we want, but we know what we don't:
we don't want a picket fence life.
we don't want to keep up with the jones'.
we don't want our conversations with people to center around our new car or curtains.

so, on these random thoughts, we began praying for a life that was not normal.
as those prayers went up & time went on, other "not normal" thoughts came. i told my husband one day that i had a pressing feeling that we, at one point or another in our life together, would have a special needs child. his response was at the very least deprecation. after all, we hadn't started a family yet & what kind of feeling is that for a young married couple? each time that thought surfaced, i successfully dismissed it as a possible foreshadowing of a distant future. maybe kid #5, when we were advanced in years & could love him or her in our old age along with all of our other children. i pictured the sweet face of a chid with down syndrome or maybe a wheelchair? what i didn't know was what i never could have pictured.

fast forward a few more years & i'm pregnant, at the halfway point. we pop in the ultrasound video to show the eager audience of family. the black & white portrait of the little one inside my belly tosses & turns on the screen. we, the proud mom & dad to-be, describe the details of crossed legs, spine, face, profile, beating 4 chamber heart, of the floating star of the show. as we narrate, we leave out a few particulars. like how most umbilical cords have 3 blood vessels & this one only has 2...& how those black blobs in the brain are actually cysts that are sometimes "normal" & sometimes not. a few months and many pounds later a specialist sat us down & said "things had progressed".

what we got was not normal. it wasn't the way we had pictured a not normal life, i mean we wanted no picket fences for petes sake. it wasn't even a special needs child to love & live a long life with. in an instant "not normal" was actually "not viable with life". it was a baby with a beating heart that had a hole in it, clenched fists, & sweet life inside my own that was terminally ill. we knew all this bad news about this kid before we even knew if it was a boy or girl.

it was a boy. his name was eliot. he was awesome & i believe is even better now. the 99 days he was with us were incredible, miraculous really. i spent 3 months & 10 days staring at the cutest "not normal" there ever was.
he left us for the much better 15 months ago. in his absence, my husband & i live with a constant ache in our hearts of missing him. this blog is about my learning to live with that ache.

an author named jerry sittser talks about how loss & saddness actually expand the soul. this is my journey of expansion.

20 comments:

the Hansels said...

amazing.

Anonymous said...

Thank you for letting us in. Even though you didn't want to post, it's amazing for your friends to read your thoughts. This answered so many questions that I have for you, but out of respect of your privacy and for you as a friend would never ask. We will never know "the missing" that you and Matt feel daily- but I want to remind you that so many of us will NEVER forget Elliot! I have thought about him throughout this entire pregnancy and have wanted you to know that so many times but did not say anything! This baby will be so precious to your friends- in addition to how special Elliot is; but never to replace him. I can't wait to meet this baby- Elliot will be a big brother on Tuesday
bek ph.

Corie said...

Wow! I am amazed at your words. I began following your blog after your sweet son had already gone to be with the Lord. Well needless to say...his life spoke volumes evem then while we were faced with the same task of have our son for a short time. Thank you for sharing. You and your husbands words have done so much for my family while walking through this journey.

Laurie said...

Ginny,

Thank you so much for allowing some of your tender and beautiful thoughts to be posted here. I found you guys right after Eliot went to be with Jesus and it touched my heart to read about your journey from the beginning. It changed me and my outlook on special needs babies forever. I have followed many journeys of Trisomy babies and their families, wanting to help. So I pray for them and try to encourage them through with the Lords help. Nineteen of these precious little ones are in heaven but there are four who are still here and thriving. I look at life differently because of Eliot and I will forever be grateful for his life and for you sharing it. I pray for this sweet gift that will be here soon with you guys and thank God for this blessing. There will always be "buts" in this life, but we are overcomers in Christ Jesus.
Thank you from my heart for sharing your journey that opened up my heart in a big way. It is Eliot's blessing to me. May God pour out His blessings all over you as you prepare to meet this beautifully and wonderfully made baby.

Love and Blessings, Laurie in Ca.

Beth said...

Ginny,
It is amazing how your thoughts, fears, dreams & expressions of faith challange me to not be "afraid of the dark" times when life just doesn't look like I thought it would. Love you all! Hazel is absolutley precious!

Ashley said...

Thanks for sharing. It's a privilege to watch you two on this journey of expansion; I pray that God will use all of the Mooneys in ways you could never imagine.

Twinkletoes said...

Thanks for sharing your new journey! Congratulations on the arrival of Eliot's baby sister! The entries you wrote are stunningly beautiful. My heart continues to be with you!

Richardson Family said...

As I sit here at my computer crying and reading your thoughts, I can't help but thank God for you and your husband and the testimony you are living. Every step you take with God's strength is a witness of His grace...it speaks volumes to so many. Please don't stop sharing and allowing perfect strangers to witness this incredible journey. You guys are amazing...the Word says it is in our weakness that He is shown strong...you have a beautiful way of glorifying the Father and pointing others to Him in the midst of your weakness. I have been so touched and challenged by Eliot's life story and his amazing parents that chose to let God be God, even when it hurts so much.

Congratulations on the birth of your beautiful daughter! Enjoy the journey!

isobella jade said...

I don't like capitals either.

T said...

ginny & matt, i don't use capitals either. less informal that way that we're not getting graded on a paper we're just sitting talking to a friend without being judged. you and matt both were given many blessings. first being eliot, second being the new blessing coming soon, and the third being your faith and how you express what's on your heart so openly with us. i also have a little buddy in heaven on june 17, 1996. there has not been a day where he hasn't crossed my heart. God is using Eliot's parents as a instrument of compassion and love. i'll be praying for a healthy delivery of eliot's little brother or sister. all of God's blessings and peace, tami (mom raising two children here on earth and cherishing one in Heaven) weecarehouston.org

Elle2702 said...

wow...I can't put it into words...I just keep commenting, because you haven't said one thing I haven't thought myself. I identify with how Matt said, It can't be normal to dread,or fear, an ultrasound. I told my husband and he laughed dryly and said, unfortunately it can. I feel like you are reading my thoughts, keep posting, keep working through it. It doesn't get easier, just sweeter. I am here, and I just like to hear you. Its thereaputic...

I have two here on earth and one waiting for me in Heaven.

Anonymous said...

I just watched the clip from Oprah on your sweet, sweet spirit Eliot. I'd like to send a little something to your family - because you've been such an inspiration to many. Could you email me an address? Thanks so much and words cannot express how much you've touched our lives - thank you!
littlebphotographycompany@gmail.com

Anonymous said...

I am very moved by your son Eliot and his spirit of love and determination.
I am a middle age grandmother, sister, and daughter.
I have three brothers. My parents' first child, a girl named Rosemary, passed away as a very young infant. My dad passed away two years ago, ago 80. In his last hours he was thinking of Rosemary. I write this as it gave me comfort . We knew he was going to seeing her shortly. I write this as I know that your reunion with Eliot will also be something that you will always anticipate. All a mystery to me, but faith in Christ is our certainty.
May God Bless . Anne
onegirlfriday@blogspot.com

Anonymous said...

First, congrats on your new mircle. I just heard aobut your story. What a wonderful story. As I read about Eliot and his parents it reminded me of my husbands and I's journy to have our little mircle. You will never forget Eliot and he will always be in your thoughts. You will have thoughts of "I wonder would life would be like if he was here". Yesterday my oldest daughter would have been 7 years old. We lost her at 22 weeks. We also lost another girl at 21 weeks in December 2004. We now have a healty little girl who will be 3 in December. I think about my girls if not every day at least once a week. No the new little one will not take the pain away but remember that joy comes in the morning. And now your joy has come. You have endured and pressed through the fear and have won the race. Ginny thank you for letting us into your thoughts. I read and can relate so much.
Shanna
momofselah@yahoo.com

TeDavi said...

I really appreciate you sharing your thoughts even though you didn't plan to, Ginny.

The safe myth really opened my eyes, because yes, I tend to try to do things on my own, push forward on my own, but at the end of the day, He's the one who choses how things will go.

My wife and I had our child at one of the most important Children's Hospitals in Canada, because our child had growth challenges before birth. We were in intermediate care, but we saw other parents with distraught faces and nurses running for emergency surgeries. Our experience wasn't hard for me, I was concerned about our child, but my heart went out for other parents.

At the end, the ones who suffer the most are the parents. No, I'm not talking about physical pain (though spiritual pain often IS physical), because the worst that can happen to a child is to go see Jesus.

On the other hand, we parents are left with a hole in our heart. I pray for all of those who go through pain because of their child's situation.

wendy remington said...

I too have a daughter named Hazel, just for the same reasons as the both of you... my husband and I liked the name, we felt it was an "old" sounding name, and no.. no relatives... For the past four years the name has brought a smile to our faces... We too have had challenges with our kids. Both of them have Cystic Fibrosis (CF) the leading genetic killer of white Americans. The life expectancy is 37 years old. Because we know this, we really try to enjoy both of our kids each day, and treasure the smile and joy that they bring to our lives!!! Enjoy your Hazel and thanks for sharing your life with us!! Congratulations!!

PS I really understood your "gel" story. A friend of mine who also has had serious medical issues with her kids and I "get" it... just because you feel you are doing everything "right" the outcome isn't always certain!! Some things you just can't protect again!!

Wendy (Hazel's mom!!!)

thelyttlesinpa said...

Hi Matt and Ginny,
Last October, I came across your blog about Eliot, and it served as a huge encouragement to me as we were in a similar situation with our daughter Janessa Hope. She's with the LORD now, and your heart-spoken words about missing Eliot are the same words my heart speaks on a daily basis. It's comforting to know I'm not alone. I want you to know you've been a blessing.
I just got connected to another family who just learned their baby boy, Isaiah, unborn, is most likely suffering the same problems and prognosis as little Eliot. I passed on your blog info to them. Sometimes, all you want to do is read about another family who has survived this, and knows the One who can give lasting Hope!

I think of Eliot very often, and although I never met him, I've gotten to know him through your poignant words (both of you!) You have our Father's heart. Thank you for sharing your grief, your joys, your trust in God.

God bless your growing family!

Amy

Anonymous said...

Well I've already wrote a comment but since I cant sleep I'll write another. Ginny, i was reading about how you ache...as do i. I was placed in the local hospital's emergency room's hallway to deliver my unborn baby. very very crude..i remember the pain and how nobody believed that i was labour (after all i do have 2 kids already)
What I'm wondering is..do you think it will help for us to have a funeral for baby Claeys? They took my baby away at the hospital :( :( :( :( man..that was the hardest part....
perhaps when you can....send me an email with your suggestion. thank you.

melissaknapp@excite.com

cazzamacca said...

my face is still leaking after seeing 99 balloons on facebook just now. you guys have touched my heart in such a way it is unbelievable, i have a special needs daughter ( autistic ) nothing like your experiance but still a challenge and a test every day. Thank you for touching my heart and making me realize how precious our little cherubs are, god bless you all. Congratulations on the birth of hazel she is beautiful her big brother will be so proud of her.
all my heart felt thoughts, carrianne mckenna. wales uk

Rachel H. said...

Dear Matt and Ginny,
My name is Rachel. I am writing an essay in my public speaking class and i decided to write about Trisomy 18 after seeing you both on Oprah. I have found all the facts and even added some sentences that pull on the strings of the heart, but i think adding a quote or two from you both would add a great deal to my essay.
with your permission i would like to use a few parts of your blog including this sentence *which i think is profound* "i spent 3 months & 10 days staring at the cutest "not normal" there ever was."
my essay is due very soon and i hope you see this.
Best Wishes to you are your family.
God Bless Eliot and Hazel
Merry Christmas
~Rachel H.