Remembering Christy

This is Christy (also known as Screamingbird for those who knew her on Pregnancy After Loss and the Grad board).
I've known her (without actually meeting her in person) for almost 6 years. I met her on WebMD on one of their forums after I miscarried Samuel. She was one of the first people I got to know.
Like me she was there because she had suffered through a miscarriage. I met a ton of my other friends through the same place the same way. These are my PAL mommies. We've gone on to have cherished children, and grown to share a great deal of friendship.
To be honest I probably can credit my friends advice and support for the kind of parent I am
. We have all shared so much of our lives with each other. We've laughed together and wept and got angry when things were going on with our closest friends.
Christy has a little girl she fought for to even give birth to...I remember when she was put on bedrest.
She had her and her daughter Sarai became a cherished child to this community as do every child in our community.
2 years ago Christy was diagnosed with AML (a form of Lukemia). We watched her fight that disease with everything she had and found herself in remission.
Fast forward to nearly a month ago, when she found out she was sick again with Lukemia. 
As a friend and part of the community we all readied ourselves and rallied together to help her fight.
She went through a round of Chemo and shaved her head (more as a symbolic thing to say this aint going to take my hair or anything else "I got this")
three weeks ago as she was recovering from Chemo and getting ready to go get her bone marrow transplant, she got a fungal lung infection. Her immune system was low due to chemo so although normal people could have easily fought it off, something else happened.
Unfortunately nearly 2 weeks ago the lung infection weakened her heart, and she had a couple of cardiac arrests and passed from this world.
This rocked the PAL mom community to the core. I am certain my feelings are shared to a certain extent. This was a real shock. Everyone who knew her thought she's got this licked. she's going to bounce back.
The only thing is...
She DIDN'T.
And now there's a 4 year old girl (who was adored by her mom) without her mom.

Being a mom with kids around the same age as hers, I immediately bawled for a while, hugged my kids and thought about what would happen to my kids if something like this happened to me.
I guess it's time to go do both a will and a living will. No one wants to think about stuff like this.

It would be impossible to say we are not grieving. We all are and I believe that although she's not in pain and in a better place, she's not here with us.

She is in God's glory. Someday we'll see her again along with the babies that are there with her that we all never had a chance to meet. We'll see her again... For real and she's probably playing scrabble and going streaking through the streets of heaven.
I just want to tell heaven you took another of my friends. a GREAT one. Rest in Peace Christy. We got it.

I am officially and you'll have to excuse me pissed at cancer. I hate you! Stop taking my friends, my family and most of all I hate you for separating moms and their children, and children from their mothers. Both of these totally suck. Please God, I know you hear my prayers find a cure for this horrible thing called cancer. Thanks.

Trina (who is hugging her kids)

My 200th Post- Welcome To Texas

Welcome to my 200th post.
Welcome to Dallas/Fort Worth, TX.

We completed our move in 2 very difficult phases.
First we got a majority of what we owned into a 14 foot trailer. This was a very time consuming and energy consuming task. Even more so in more than 100 degree weather. The rest was either given away, put on pallets to be sent to the retail store that Andrew is working for or sent to a friend's house to be shipped to me later. 
Because our children are very important to us and we were almost certain  that they were feeling the stress of our move we decided with our family friends that it was best if all of the kids and myself traveled via airplane to our destination. This would prevent the pain of traveling for a long time with small children (2 of which are in diapers) and it would also make more room in the vehicle.
We are close family friends with a friend of ours who was able to use her buddy passes and we flew American Airlines. Thank you Cynthia... Our hearts are very grateful for your generosity.  It took a few hours to get on a flight but once we were on, we eventually were on our way... The plane was full of families of Boy scouts. Some were in uniforms..
Both Jonathan and Sarah fell asleep on the plane as soon as we too off. Daniel was a true handful between taking off his seat belt, and trying to take off his clothes and go streaking on the airplane.all whilst being loud and comical.Many people stated that I was really brave for flying with 3 kids.  NO I was INSANE  for flying standby with 3 kids. I was brave for carrying it out. I should be awarded the mommy badge of honor.

Thank you to Jennifer and Jonathan W. and Barbara (also known as Babz and sometimes my anonymous commenter)and  George P.- Barbara hosted us at her home and took us to the airport. We are really grateful for the southern breakfast you made for us because it was after 6:30 pm when  we landed in Texas.
Major thanks to all that came and helped, lent prayer or emotional support.

Andrew left a few days later and drove across several southern states. It took him a day and a half. to get here.

Thanks to a friend's and God's providence, we hired professional movers we stumbled upon whilst driving around our apartment complex. This was a independently owned local company and not a major chain. The owner worked on every job. They were all very nice and within 2 hours all of our stuff was in our third floor apartment. This would have taken Andrew and our friend Brooks 3 weeks in this weather.  And it was well more than worth what we paid for them.  I will never move without movers again! I just wish we had this on the SC side of our move, It would have been much faster..

Here is a picture I took on my phone last night. I hate my new phone. I had to give up my Blackberry Bold. I loved that phone.
The trailer is now back on craigslist for 2600. and Andrew will be looking for another cheap but reliable car to drive himself to work.

Prayer requests- We will be taking Daniel to the School district office here to get his speech assessed to see if he needs speech therapy.  He's not talking very well.
We will also be looking for a great pediatrician. and we need to do this in the next couple of days. We've had a few really rough nights with Sarah whining and crying. While I believe  she's beginning to cut her first tooth, I'd love to rule out other things.

Don't think that for a minute I wasn't going to mention a friend to a lot of my friends of mine... Christy lost her battle with Lukemia on the Friday after I arrived here.  She left behind a 4 year old daughter, a husband and a step daughter who just delivered a healthy baby girl (so she became a grandmother during her last days of life)...
We are all grieving the loss of this friend/sister.
I will be writing in my next post about this.
Be blessed

Saying goodbye

Someone asked me if they could subscribe via email... You can on this  Right hand column at the top---->
 It will email you my posting when I post it...

This week end was full of very challenging emotions.

We had a  going away party at Cantina 1511.
We had invited so many people I thought we weren't going to be able to sit in the area with glass walls called the "fish bowl". Here's a pic of everyone who came. and since I hate it when I look at someone elses photographs and looking at people with no names I will tell you about them below the picture.

Left to Right Top to bottom... and I'll do kids last...
Myself, Andrew. Harold and Donna H, Jonathan and Jennifer W,Crystal O
and her son Ahren(4).
Sarah Grace(6m), Daniel Robert(2 3/4), and Jonathan Andrew(5)- The last  3 are mine :-)

By now you know Andrew and I. Harold we met a long time ago at a Home fellowship. We were worshipping and praying for each other. I prayed for him and a great friendship developed between our family and him..  I also enjoyed Praying on healing teams with him and many others. He met his wife Donna while on a prayer team.  He was married at the age of 80 and is definitely one of those men who never let their age show.
Jennifer and Jonathan we met through mutual friends of ours. Funny how we always make friends from the friends of  others.  Over the years and especially over the last year we have become close.
Jennifer lost her job through no fault of her own  and she needs a job.  She is studying to become a Christian education person, so she can become a youth minister.

Crystal O: We met her and Jim at a home group and became friends. When we first met them Jim and Crystal were newlyweds. They were indeed and still are the cutest and amazing people.

This was so amazing and bittersweet. Amazing because when we moved to the Carolinas  we had been married 6 months and knew absolutely nobody.
Look at our friends, and this picture is but a mere fraction of the amazing friendships we have carved out here.
Bitter sweet because we will not be  seeing them as often as we are used to.

Sunday we went to Antioch... The church we have been at for the past year... We've met so many amazing people there. Our Hearts are really sad to say see you later.
They prayed for us and sent us as missionaries to Texas. Because if you didn't know Texas is like a whole other country. I really hope that isn't a prophetic statement.

I will definitely come back and visit. I love all of these very amazing people. That and I REALLY want to go on the Israel trip with the Wynns. If you would like to contribute to this trip or want to go with me please contact me.v  I will be getting the info myself. 

So Until next time be very blessed.

Moving and other fun activities.

Okay so the last two weeks have been really, really busy at our house.
We have had all the doctors appointments that we normally have at this time of year. We are so glad that we got the chance to see all of our doctors/Specialists.

We went to the Developmental Pediatrician for Jonathan (as you read in my last post)
We went to The pediatrician...In fact we've been twice. Once for a recheck for Daniel and one for Sarah who got the same respiratory bug we all got.
I went to see both my OB/GYN and my Family Medicine doc.- I had a serious bout of Bronchitis and it brought with it several days of having a blazing fever of 104.
I have weaned off of medication temporarily but will probably happily go back on some when I find me a new doctor.
We went and had a visit with Jonathan's genetics doctor...
God I puffy heart that guy.  Sorry to say we totally dreaded the idea of going and seeing him in the beginning as well. Best experience with Jonathan with a specialist (prior to going to developmental peds).
As a side note on the genetics: I will never EVER google un reviewed results ever again. We were thinking Jonathan was dying and had cancer... and were terrified something was about to turn ugly. God was probably definitely giggling at me because it turned out totally stellar. He's fine.

We saw Jonathan's eye doctor...His eyes are stable although we have to wait for his eyes to get worse before we can do anything more.  They were slightly worse, but not enough to do anything but put a patch over one of his eyes.  Forgot which eye I have to do that to so being a human, I will have to call back and fight my way through voice mail.

Andrew- Has gone to both a sleep specialist and his internal medicine doctor.  He now sleeps with a cpap and is totally the quietest sleeper in the house. A CPAP is Continuous Positive Airway Pressure.  It shoots a constant flow of air into his nose.   The machine itself is silent. The chin strap he wears to help keep his mouth closed... Is by far the sexiest thing.  and by sexy I mean this...If it helps him get the restful sleep he needs... then that is the sexiest thing ever. I can sleep in peace knowing everyone is sleeping well.

I am going to leave with a little bit about loading a trailer.  Most of the stuff in my home can be put into the back of a trailer.  Most of the big stuff was absolutely the heaviest stuff ever. We will be hiring a couple of people for a couple of hours (for money and or food/beverages). My back hurts now and hopefully next week our chiropractor can move things back into place.

Be Blesed: Next entry will be about actually leaving and our going away party.
Hopefully Sarah and I will make it out to the DFW area.  We haven't exactly even penciled in how we're getting out there.   This is taking all of my patience and faith... I am a planner and the more I know ahead of time, the better and calmer I am.

Much LOVE

Big Bad Wolf: Misunderstood?

We went to the Developmental pediatrician yesterday for our appointment for Jonathan. Jonathan has been being seen by a developmental pediatrician because he has language, gross motor, fine motor and cognitive delays in his development.  Last summer we did some genetic testing and discovered he has a deletion on the 21st chromosome.  This is so rare, that every time someone gets discovered to have this, all our information about symptoms, development, etc. gets put into a world wide database..
The visit went rather well and it seems that medication for Jonathan's hyper-ness  is working although we just reached a level. Could it be dialed in a little better? Yes, and it will as soon as our move to Euless is completed, and we get us a new pediatrician.

The pediatrician we see only sees kids with developmental or behavior issues. 
I am very glad we got to see the developmental pediatrician.
When I was told by the genetics doctor that we needed to see this guy, my gut reaction was that he was the big bad wolf.
This was the LAST thing I wanted for my child. I didn't need another professional or another human being for that matter, pointing at my child and putting another label on him.
Jonathan is five years old, and has had quite a life of doctors and specialists...I'd prefer at this point to try and limit the trauma from the medical community. He gets traumatized by all the poking and really HATES blood work.
I went on a facebook page a couple of my friends had been on.  It's called Shut up About Your Perfect Kid. It's a community of people who are either parents of special kids or someone who works with them or just loves one.
This page is actually created by the authors of a book of the same name.  Although I haven't read this book yet (shrugs and hangs my head in shame) and I will... Trust me it's in my amazon shopping cart right now.
I went there with questions, and got not only an answer, but also a ton of encouragement and support.
Someone suggested that I take my son to see what they said and not to worry, these aren't finger pointers.

I was really pregnant at the time with Sarah and had just spent a week in the hospital in November. I drove slightly outside the 40 minute circle of late pregnancy. I actually drove 40 miles.
I was not really sure what to expect other than feeling like I had completed  an application to the ministry school I graduated from AGAIN. There were so many steps in getting him seen there, that made completing mortgage paperwork seem like it was EASY.
When we came to the appointment and finally met the doctor I was so shocked. He was so easy to talk to just because of his manner and not just because he looked like a friend of ours named Brooks.
 He answered every question I had, that he could answer. Gave me names of books I could read, and educated me on Individual Education Plans (or more commonly know as an IEP).
He was NOT the Big Bad Wolf that I thought he would be. In fact he became more of a coach, a teacher, and a cheer leader.
Which leads me to ask: What things are you afraid of?
When you really look that unknown thing down, is it realistic to be afraid of it or we just afraid of too much?
Just as a matter of fact, there are real things that we should be afraid of;just to keep us safe.I am not trying to reduce that reality, at all. 
I just checked off another thing I was afraid of off our list and it's an exciting experience.

Be Blessed and go conquer your giants!

Riverbanks Zoo & Edventure- Columbia SC

This weekend marked the ending of Pre-K for Jonathan. Since there was no graduation ceremony, we decided to use our various coupons we had gathered for Columbia, South Carolina to mark this milestone.  The next milestone for Jonathan will be the first day of Kindergarden, which will be in the Hurst EulessBedford School (HEB)district after we move next month to Euless, Texas.

Coupons/gift cards used on this Trip:
1 free nights stay at Embassy Suites-Graystone (purchased for a song at a March of Dimes Silent auction)
4 General admission passes to Riverbanks Zoo and Gardens (also purchased for a song at a silent auction)
1-$50 gift card to Di Prados-as a part of the zoo package that was at the silent auction.
4 passes to Edventure- This was a Groupon

Riverbanks Zoo and Garden-
This was and always has been a favorite destination of our family. I give it 2 thumbs up.
Everything was very accessible with our stroller. Even the Garden tram had a ramp.

 EdVenture- For ages 4 and up 2 thumbs up. For ages 3 and Under Two thumbs down.

Okay My kids ages: 5 years old, Nearly 3 years old and 5 months.
We had several problems with this place as soo as we walked in the place. This place was not stroller friendly, although there was an elevator.
Many of their doorways were either too narrow or cut in half by building columns. I couldn't get through some of the stuff and the other part I could I felt as though I was blocking the flow of traffic.
For a museum this is bad.
When we went to turn in our groupon that we had purchased, they tried to sell us passes to their butterfly exhibit... Only thing was they did not mention we could not take our stroller, and when confronted about it stated it was a USDA rule... However, they were the ones who sold us the ticket KNOWING we had a stroller.. (scratches head and shrugs). Not to worry though. Andrew took Jonathan although the ticket was originally purchased for me. We were able to see about half of their exhibits
The Three and under set- Big thumbs down. They had one single room in the place cordoned off that had foamy toys and like a play stove and a play ship.  They also had a soft area for babies that was out of line sight wise,obviously having both kids in both places wasn't going to do. We ditched the infant area quickly.
I will give them a positive for trying though. They stuck a family bathroom in there as well although it was really tight to get in because of another building column.  This whole place was poorly ventilated and when we were there it was HOT.
Since we have developmental and Language delays this place was a challenge although still enjoyable.
If I were to say anything to another parent with a child with any kind of disability about this place... Go when your your child reaches a developmental equivalent of 42 months.(that's nearly 4). I say this because this is where Jonathan is in some things and he's just starting to enjoy stuff like this.

Di Pratos- Lovely Brunch- Deli style. Order at the counter. Great food. Very reasonable.  Great selection for kids menu. Awesome quality for the price.

 It was this week end I discovered I really want to begin not writing about our  adventures, but also some of the destinations; because sometimes as a special needs parent I am experiencing places differently than other people. We all need to know. If we had known this before hand We would have either not have gone OR we would have taken the Under three kids, whom I call the "Littles" out to a park or gone on to the hotel.

 Sarah in the play area. she enjoyed this. although we do this at home.

That was pretty much our trip. Hope you enjoyed this.
Until next time.
Be Blessed

Last day of Pre-K... Thoughts of gratitude

Before I start to  here to thank a lot of people here, I will give you a point of reference so you can sort of get how far Mr. Jonathan (aka Mr. J).

When He turned 3...We were just beginning to teach him how to go up and down stairs... He fell down ALOT. Which scared both Andrew and myself. 
He has a lot of issues with Balance... He would fall down just out of nowhere.  He got that honest... Right Dad? Andrew STILL does this, and I'm ashamed to say I think it's funny.
OKAY I am so bad.

Balance is very important for walking and running...heck even standing up. Both Jonathan and myself have to really work at it. It's part of the rare genetic disorder we both share.

He is falling down way less now.

When He started pre-k when he was 3 years old. He  was basically non verbal. He had a vocabulary of about 20 words. He would scream a lot and have temper tantrums our of his frustration.
It was sad and frustrating  for us as well. I am so sure I've written about it here before.
Now that he's 5, he can tell you some stories... and although some of his words STILL don't make sense he can tell you a story. He has had some interesting dreams.

Baby You've come a LOOONG way!

 He does a lot of other stuff now like write his name.  He loves to  draw.
He LOVES the computer... and his favorite game right now is Monopoly(which is on facebook)

This morning was bittersweet for me because without this school, he would not be talking or running around and being the smart little boy I always knew he was.
The only thing is my sweet little boy; you know the one we brought home from the nicu on oxygen, is growing up.
Several people to thank here.

First the folks from Easter Seals Early intervention. You were my sanity. You made life with Jonathan a little easier to deal with.
Thank you to the Exceptional Child dept. at the Rock Hill School District...
Especially Miss Kristen, and the other therapists who worked with him... Thanks for always answering our questions.
Special, special thanks to Mrs. Ard and Mrs. Puckett. Without you pouring your love into Jonathan and  the other kids, we wouldn't have seen as much progress. Don't ever think that will ever go unnoticed.
You both deserve teachers of the year! Thanks for also teaching us about IEP's.
That and oh yes, I will never ever be mad at the decision to move him to the other class. We were all working towards this as a goal of his.

To my dear Antioch family, who've all Put your arms around my son, at one time or another in Sunday school, I credit you guys and the prayers you've prayed for him. Our God is bigger.