Sunday, February 28, 2010

what a difference a year makes

One year ago today, I wrote this:

After Matt and I finished our visit, I took Amy back to see him. We looked at him for about 10 seconds when he started turning purple. She and I were both freaking out, trying to get someone's attention. Luckily the dermatologist was still in there and was more assertive in getting someone to attend to him. He was purple for what seemed like a really long time before the alarm went off, and everyone went into action. He had stopped breathing, and it took them several minutes to get him breathing again. Amy ran out and got Matt. And for a few minutes, Matt stood and watched them work on Jonah while I cried in an opposite corner of the room. It was extremely scary, and I still have not settled down from it. I'm somewhere between afraid to leave his side for a second and not wanting to be back in there at all.

This night last year I experienced
this:

I took a sleeping pill last night (a generic form of Ambien) and had MAJOR hallucinations. I can’t begin to explain how horrible it was, but by the time it was over, Matt was lying on one side of me, his mom on the other, with Matt holding my eyes closed trying to get me to go to sleep. I knew they were both there, but I could either not see them or they looked very scary. All kinds of creatures and figures floated around me (their skin peeling off), all pulling me back trying to take me away. I knew there were two realities – the reality of Matt in the room trying to calm me, and the reality of the hallucinations. One was no more real than the other. I kept saying to Matt, “Where are you? They are trying to take me.” It was the scariest non-reality reality I’ve ever experienced, and unfortunately I remember every detail. I felt Satan’s presence very real there. Although the hallucination was drug-induced, Satan definitely took advantage of my weakness. Between the stress and worry over Jonah, lack of sleep, having to face going home without a baby in my arms again, and the sleep drug, it was a bad night.

Last year, this time, I had seen my baby stop breathing and had thought he was going to die right in front of my eyes (at 37 weeks and one day, just like Gabe). And I had gone home, now for the second time, having given birth but with no baby to take home with me. I had dreamed of demons and zombies coming after me with their skin falling off. This day and night last year was pretty hopeless for me.


What a difference a year makes.

Tonight I go to bed with hope for a cure and hope for Jonah's future. I smile and laugh more than I cry, and I just got to celebrate with my Jonah at the coolest kick-butt party EVAH (about a gazillion birthday party posts to come...).

I'm exhausted, but I'm hoping for sweet dreams.
*********************************

On a side note, between the $7,553.01 from the auction and the donations we got at Jonah's birthday party, DebRA will be receiving $9,222.01. And that's not counting Meg's Avon Event sales or anything that was donated directly to DebRA.

What a difference a year makes.

30 comments:

tomandcheryl said...

Just wanted to say, Happy birthday to the big guy! And I wanted to say, good for you for your fundraising. That is awesome!
~Cheryl

Janel said...

You are SO AMAZING! What a difference a year makes for sure! I cannot tell you how happy I am that you have found hope!

The donation to DebRA is outstanding!! you ROCK girl!!

Amy Dalon said...

AMAZING! I've been reading your blog since Jonah was born, but I don't comment much. Happy Birthday to your sweet little guy- I can't wait to see birthday pics:).

Jessica said...

I'm so happy that Gabe and Jonah made so many people, including myself, aware of EB. I am so happy I could be apart of the auction in honor of his 1st birthday!! I hope there are many more birthdays to come :).

Lisa said...

Yes, Jonah's birthday party was amazing! You know you've got something going when a four-year old girl says your party tops a live musical of Belle in Beauty & the Beast. Rachel saw the musical last night after the party, but definitely preferred Jonah's big event. Thank you so much for including us!!

Deanna said...

Happy birthday, Jonah! What a difference your little guy(s) have made!! I'm so glad you're in a much, much better place than a year ago. Your strength continues to amaze me. We pray for you guys often!

Tricia said...

Wow! What a difference a year makes is right! Sometimes we can get bogged down in the stress that is day to day and not see the big picture of how far we have come. Good job doing that here. I hope next years memorial is even better.

ashley said...

i'm so glad for you and your family and amazing jonah!! as a future pediatrician i am becoming very EB aware so i can hopefully help recognize it early and know enough not to handle the newborns, etc. i've learned that and so much more from you and the other EB mamas who have blogs. thank you for sharing with us!
~ashley

Janet said...

Sounds as though the auction went great. I kept getting out-bid on everything! I'm sure the money made will make a difference. After following Sam's caringbridge site and now following Rafi, I can't imagine a cure is far away.

I'm glad Jonah's birthday went well. I can't wait to see the pictures!

Katherine @ Grass Stains said...

It was an honor to be there to celebrate all that has happened over the last year AND all the good things that are to come. Love you! Miss you already.

Amy said...

Man, the tears have been flowing the last few days. It was definitely scary all over again reading the post from last year...from your horrible hallucinations to Jonah's breath stopping before our eyes. I'm glad it's a year ago and that Jonah is doing AMAZING today. The party was fantastic...I hope you had a great time. We did!

Loni said...

Amazing, I can't think of any other word to best describe it! (I am sorry, I read often but am trying to comment on more blogs that I read, so this is the first time you've probably seen me.) I pray for Jonah often and think you are an incredible mother and have more strength than I could ever imagine, Patrice! Keep doing what you're doing because Jonah IS a miracle and although God deserves the glory, you deserve much of the credit (and Matt too!)

amanda said...

What a miracle. That was certainly a huge spiritual battle and our GOD ROCKS and a year later you are celebrating Jonah's 1st birthday! Happy Birthday Johan.
Patrice you and Matt are awesome parents and soooo strong!

e. said...

Patrice! You should feel so proud of yourself (for so so many reasons) but right now I am congratulating you on nearly $10,000 going to DebRA!!! All in the name of your sweet boy. I am in awe of you and the transformation from today to one year ago. Love and prayers from Ottawa, Canada!

Me, the boys and a Farm... said...

AWESOME! Thats all one could say...the money, celebrating a first birthday and the difference a year has made.

Love from our family to yours!

Hope your birthday was as great as you are Baby Jonah! Can't wait to see the pictures!

mrsrubly said...

can't wait to see that handsome birthday boy!WHOA that's extremely awesome on the fundraising! way to go to the williams' family!

Nancy said...

WOO HOO! Glad the auction was such a success!

Toni :O) said...

That was probably one of the most FUN auctions I have EVA participated in! What an amazing donation to DebRA that we all came up with...WOWWIE WOW WOW!! I think it should be done every year to celebrate sweet Jonut's birthday! I can't WAIT to receive my goodies and see his first birthday party pictures....yay!!

Ellen said...

Your amazing!! Your bringing great awareness to this condition and your fundraising is awesome! You go girl!!

Beth said...

Bravo Patrice and Matt! You have survived an unbelievable year and Jonah is a happy, loved and thriving little boy. Thank you for sharing your story!

Laura A said...

Patrice, you amaze me daily. I hadn't started reading your blog when Jonah was first born, so I didn't see that post. The fact that you had the ability to write at all is unreal (and most certainly God-inspired). It has been such a blessing to be able to share (even in just a little way) in yours/Matt's/Jonah's lives. Thank you again for opening your hearts to your "bloggy family!"

Jackson (my 5-year old) was VERY excited to hear about Jonah turning 1. And now he won't let me leave his room at night until we've prayed for him. He (and the rest of the Anderson kiddos) can't wait to see what a rockin' party Jonah had!!

Hope you have a wonderful Monday with your sweet 1-YEAR-OLD!!!

Love from TX!
Laura

Just Diane said...

Thats just pure awesomeness! Happy Birthday again to big boy Jonah.

Ebeling Family said...

AMAZING!!
I send my love and prayers that the next year of his life, and yours, is even BETTER!
Praise the Lord!

This is the day the LORD has made, let us rejoice and be glad in it!


Em

Megan said...

wow, i'd say a year makes a whole lotta difference!!! :) I cant imagine how bad that night was when you took that generic form of ambien and were experiencing those hallucinations! I used to be prescribed that and the 1st time I took it I laid down to read a magazine and the people in the magazine were moving and talking to each other!!!! It would make me act like I was drunk and i'd be falling over, etc... needless to say I didn realize I was supposed to go to bed IMMEDIATELY after I took the pill and would stay awake trying to just "get one more thing done" and Im so grateful I'm off those now!!! Ambien is bad!!!

SO EXCITED to see jonah's birthday pictures!!!!!!!!!! and congrats on all the money raised for debRA :)

*megan from wi*

Kristen said...

As I read this, all I can think of is the part in Scripture where it tells us that God turns our mourning into rejoicing. I'm praising that a year later, He has brought you to where you are and has helped you grow through your past. Thanks for continuing to share your life...

Nicole said...

I've been lurking here for close to a year. I don't even remember how I found your blog. What I do know is you have a gorgeous boy there.
And Patrice - your strength and courage and how strongly you fight to find a cure for Jonah are an inspiration. You have a wonderful family!
Happy Birthday, Jonah!!!!

Cindy said...

Happy Birthday to Jonah! I think you are amazing.

I chose your blog for an award...please come by to pick it up. :-)

The Skinny on Getting Thinny said...

wow i am so touched!!!! What an amazing testimony you have! Even though I am sure some days you dont want to have to share your story, thank you for doing so!

Mandy said...

WAY TO GO JONAH! You raised nearly $10K! That is fantastic! Congratulations and Happy Birthday!! ♥

Rebecca said...

Happy Birthday dear sweet Jonah! Patrice and Matt - thank-you for sharing your life with us - it has changed mine.