16 years ago

16 years ago today,192 months , 832 weeks ago, 5840 days  ago we said goodbye to our twins....

We were shocked to find out I was pregnant again so soon after having Steve, remember we were the ones who had waited six years for a child. He was just 7 months old.   But to our shock, I took a pregnancy test before mouth surgery....and another ....and another ....and they all said the same thing...POSITIVE!  The man at the same drugstore down the street from us in NYC finally told me I needed to believe what I was seeing and quit buying up all his pregnancy tests LOL

We were thrilled and from the very beginning I "knew' it was twins.  I dont' know how I knew it, I just did!  On our 9 week checkup, they did a sonogram and sure enough, there was baby A and baby B!   It was an easier pregnancy than Sam, I didn't throw up as much thank God.  At 19 1/2 weeks I did the AFP test (alpha fetal protein)  It came back showing one child could have a neruo tube defect.  The doctors weren't too worried since the test was a bit late and I was carrying twins but they did send us to a high risk doctor and a geneticist.  So first we saw the geneticists and determined that there was nothing on either side of our family.  Then a week later we had our appointment with the high risk doctor and was having a major ultrasound.

That morning as we were leaving, I drank a bunch of OJ because I hadn't felt much movement and I was scared.....

In the office we had a screen and the tech had a screen.  As soon as the tech put the wand on my stomach, I knew the first baby was dead, there was no movement and I said "he is dead" then she moved to the next baby and I said "he's dead" and then threw up  (my response to stress)  the doctor came flying in .....One baby did have Sevres spinal bifida....

It took another week before they got me into the hospital for the surgery.  I did not want to go through labor.  I had a D &E I was already 22 weeks when they died so I was much too far along for a regular D&C.  After they took them I began to  hemorrhage

Disseminated intravascular coagulation (DIC) is what I had.....
Disseminated intravascular coagulation (DIC) is a rare, life-threatening condition that prevents a person's blood from clotting normally. It may cause excessive clotting (thrombosis) or bleeding (hemorrhage) throughout the body and lead to shock, organ failure, and death.
In DIC, the body's natural ability to regulate blood clotting does not function properly. This causes the blood's clotting cells (platelets) to clump together and clog small blood vessels throughout the body. This excessive clotting damages organs, destroys blood cells, and depletes the supply of platelets and other clotting factors so that the blood is no longer able to clot normally. This often causes widespread bleeding, both internally and externally.  We've been told that 99% of people with it die.   It was a miracle that I lived.  '

To top it off, there was some tainted blood that got into the NYC blood supply.  In that same month two people had been affected at the same hospital I was at!  So for years after I had to have HIV testing....

It was an awful situation in every way.  At that time we lived in NYC and were very alone with no family near us.  I went through the deepest depression of my life and had it not been for Steve, I would have been glad to die....  No one understood the pain I was feeling.  I even had a minister that we began working with tell me to "get over it" on the way to a service where we would be sharing about the new ministry we were helping to launch.....Let's just say I  can not write on my blog my response to him!  It was a very cold night!  LOL  what a great Job's Comforter huh?  Needless to say he did not attempt to give me any more advice!  Pretty sure he thought I was demon possessed....

I walked through the deepest darkest valley of my life during the next few years.  I was so angry at God, at everyone to be honest....I questioned everything I had ever thought or believed.  I wanted those babies!!!!

One of the main reason I think I struggled so much was that although I had good theology in my head...I had been influenced by the Pentecostal/charismatic bad theology that teaches if we are serving God our life is going to be great.....we're protected....

Now if you'd asked me if I believed that, I probably would have said NO!  But I think subconsciously I did believe that....

I can remember going down the list with God and showing Him how He was so wrong to have let this happen to us.  I listed all the good I had done, and how I had served Him faithfully...Didn't He know we were leaving in the middle of Brooklyn NY, making nothing...just to serve Him?  

See I had never had good in depth teaching about suffering.  I was raised Pentecostal and I can tell you that Pentecostals like to tell you of the Victory In Jesus NOT the suffering in Jesus.  You don't get too many amens when you talk about suffering.  So although I had good theology, in my mind were all those sermons over the years about how God will do miracles, part the Red Sea, give you back your dead....  I even had a nice but weird guy lay hands on me and pray that God would bring the twins back to life.  That freaked me out quite a bit to say the least....

So in my heart of hearts, I felt God had let me down.  So I decided to run away from God...and run I did......for years.  I didn't try to be up in people's faces about it but I wanted to be left alone.  Please remember I was still a preacher's wife.   We moved home just a few months after we lost the twins and Jon went to work for the Department of Corrections as a chaplain and I went back to work as a probation officer.  Steve was little and Jon had to work on Sundays often so I was able to stay out of church most of the time. 

But during those years, I always felt God drawing me back to Him.  Sometimes I would cry out to Him, sometimes I'd rail at Him.  It was not a pretty time, really hard on my marriage.  Somehow I worked through it all, got a true picture of what the BIBLE teaches, not man.....And I began to see God is a God that is close to the broken hearted.  The bible says Jesus was a man of sorrows, acquainted with grief.   I began to see that God was not responsible for the evil in the world.  Man had made the choice in the Garden of Eden and the affects of that choice effect us today!  I began to see that God rarely delivers us FROM things but rather THROUGH things.....I looked at the whole NT, so much suffering by the greatest saints.  Ten of the disciples got martyred for their faith, God didn't deliver them....What an eye opening experience! 

So I learned all that to be given Sam....I am honored to be his mom and wouldn't change a thing but it was ironic to me.  BUT I had gone through all those years for a reason, this time, I was not going to fail the test.  I was going to trust God.  Since then I've been "blessed" to have many other times when I had to make the choice to trust God and not get bitter.  Obviously I am going through the hardest trial yet.  Again I chose to trust God and not get bitter!!  So let me encourage you to look to God, see Him for who He is, not for what man says He is!  Don't be influenced by faulty preaching or even worse "down home theology"  like my famous hated saying "God won't put on you more than you can bear"  That is no more biblical theology or even scripture than "Twinkle Twinkle little star"   Know God for yourself. know His real promises not something written in a little "promise book"  Be acquainted with the real promises of God AND REAL RESPONSIBILITIES of a person hoping to hook up with those promises.....  Nothing kills me anymore than a person who is "claiming " God's blessing yet is living in sin according to the same bible they are trying to claim the blessings from.....  For example if you are living with your boyfriend, don't expect God to bless your finances....OK, you understand what I'm saying?  You can't have the blessings without the cost...and the blessings may not be the blessing you want. 

Selah update.....
She "stormed" a bit more than usual today but didn't require any additional meds.  She was still consistent with her reactions.  She has never regressed any since she started to progress.  Some days she progresses more than others. 

We did not get to have the conference with everyone today but we did get to touch base with all the main players individually.  ...

The social worker (who should get a medal for working with us)  has sent 80 pages to the rehab in Florida to see if she would be a candidate, we found out there is a Ronald McDonald House there that works with that rehab center.  We won't be going right away but we need to get things planned.

The therapist (who is wonderful) was great with Selah today.  She is always encouraging.  We were talking about rehab.  The rehab here requires a person to be able to participate for 3 hours at a time.  She feels Selah is up to 2 hours at a time now and progressing!  She also explained that Selah has responded so differently than most kids with NDs (near drownings)  Instead of her "drawing up" she has extended her limbs.  She told us the term for it....can't remember.  By extending it actually has helped her.  She also said most NDs begin to respond from the feet and it works it way up the body, with the head being the last thing to respond.  Selah has done absolutely the opposite.  Who knows WHY? 

The doctor (who is so focused and helpful)  came in and just sat and talked with us.  I'm going to try and convey some things we talked about...  We were told from the beginning that if there were no changes within 3 weeks from the accident, then it was unlikely there would ever be any real changes.  Well it was almost 8 weeks before we saw much of anything.  I asked about that and she said that that is the standard BUT they've seen changes in folks far out from that time frame but it was not likely.   I also asked if her delays that she had before could have caused her to be more sluggish to respond and she said she wasn't sure but it could be a possibility, although some things like the gag/cough should be there regardless.  We talked about the fish oil study  and how it might affect her and how soon,  It seems to be about a month out that the big changes start taking place but that is not to say we won't see things before then.

Tomorrow the study goes before the review committee and hopefully by Monday all her testing will be complete and it will go into her system!  I can't wait!  Then her blood levels are monitored to see when the inflammation level is down and the Omega 3 is up....and when it reaches a certain level that is when we should see change if there is going to be any..  (we think there will be)

So please pray there is no problem with the review board, that the fish oil gets here. that we go to the right rehab, and that the fish oil works!!!!   Lots of exciting stuff....

One last note, I will never forget my twins, although I never met them.  I am looking forward to that day we will meet......