Tuesday, July 19, 2011

Mary Elizabeth - my sweet baby girl

I have been putting off this post and our blog for so long now...for many reasons. I am afraid of putting it down on "paper"...maybe this really IS a bad dream and we will wake up one day. It has been too hard to put everything together - I will start, then not be able to finish. And I have been busy...like really busy (I just thought I was busy before!).
All our friends and family knew we were having problems with ME...crying, eating (or NOT eating), "posturing" or stiffening, etc...A few months ago, after ME turned 4 months; after I had seen our pediatrician ALOT and our GI specialist ALOT, trying to find out what was wrong with ME, what was causing her to be in so much pain? Why is she so stiff? Why is she having episodes that look like seizures? ETC....I had a meltdown in our GI doctors office (complete with tears and snot)...asking, "Why can't anyone HELP us?!" We had been on the "list" to see the neurologist at Children's for a month or so at that time (and still had a month or so to wait). The doctor left the room...he came back withe his supervisor and said that if we really wanted to see a neurologist and get all of our questions answered immediately, he would admit us into the hospital that night. Of course, I said yes.
After three days of testing - MRI, EEG, eye exam, etc...and meeting with every doctor, resident, Fellow at Children's Hospital; we were given news that no mom or dad ever wants to hear.
Mary Elizabeth's MRI showed a brain injury consistent with cerebral palsy. Her EEG showed abnormal activity - not quite organized anough to be seizures yet...but not good. Her vision was not up to age level as far as tracking, holding gaze, etc...
Even though Seth and I were prepared (we had been suspecting CP for some time now), it hit us like a ton of bricks. I just stood there...numb. I remember my sister was in the room holding Mary Elizabeth while we spoke to the doctor. She was crying, I was crying, Seth was crying, ME was crying. Awful.
At first I felt this overwhelming sadness...for ME, for our family, for Ben. I was swimming in it for some time. Then came the guilt...why couldn't I protect her? It is my job as her Mom to keep her safe from all harm, and I failed. Now I feel as though I have accepted it, but am very easily sent back to sadness and guilt...ALOT. These last months have been a roller coaster for me and Seth. We are determined to stay positive and work hard to do everything we can to make ME happy and give her every opportunity to be successful (same as we would for Ben). And most days start off that way...then we have a bad therapy session, or I see a child in a wheelchair, or a see a healthy child running and jumping - and I lose it again.
Please pray for our family. Pray for ME - to feel better, eat better, for her brain to "rewire" and learn to do the things she cannot right now and for her to be happy. Pray for Ben - to learn to be more patient with his Mommy and sister (alot to ask a 2 year old), to have a wonderful relationship with his baby sister and to be happy. Pray for me - for strength and action...to get up each day and make doctor's appts. and therapy appts. and to seek out information so that I can learn everything there is to know about ME's injury (and be the expert), for patience with ME and Ben, for continued hope and faith that God WILL help and support our family and bring joy to our lives, and for a sense of peace, Pray for Seth - for strength, for continued success and stability in his career (we would be in a really worse place if we had not been here in Nola b/c of his job), and for general stability as a husband and father.

Over the past few months, we have seen an outpouring of love and support from friends, family, and people who do not even know us. Thank you to everyone for your warm words and prayers - please don't stop...we need it still! Thank you to our GI doctor who was the only doctor who was willing to go above and beyond to help us in the beginning. Thanks to Aunt Emily - for keeping Ben happy while we were at doctor's appts. and in the hospital. Thanks to Uncle Jason - for letting us use your "fame" to get special treatment at Children's. Thanks to my mom and Seth's mom and dad - for being so supportive and keeping Benjamin feeling special too. Thanks to Maria - for sending us Laurel...and to Laurel - for bringing us Cori. Thanks to Cori - who was a stranger a few months ago, but is now such an important part in this process for us right now. And the list goes on and on...we are grateful and blessed in the midst of this storm.

The Things Ben Says...

Benjamin keeps me laughing on a daily basis...usually many times a day (when I am not changing poo, which is a whole 'nother post...yes, unfortunately - I have tons of new material for that!).
He is OBSESSED with Cars right now (we have moved past trains) and knows each one by name...and if I get a name wrong, he lets me know. And I am only allowed to play with the cars he thinks are "slow", not "super-fast" like Lightning McQueen. Those cars are reserved for him and Virginia...
Speaking of Virginia, he LOVES his cousin "Ginnia"! And he thinks O-Man is pretty special too! He asks me every day if he can go to Aunt Emmy's house...at first I was upset; does he think Aunt Emmy is more fun than Mommy? Nah! Ginia lives at Aunt Emmy's house...and she IS more fun than Mommy!
Benjamin has become a very annoying (only sometimes funny) backseat driver. He is very much aware of the red lights, green lights, etc...and he lets me know when I can go and when I should stop. Also, he lets me know if I am going too slow (and the car next to us is "winning") or too fast ("just like Daddy"). The other day he became very excited while we were at a red light. "Mommy! I found MY race car! THIS is the race car I want Mommy!! LOOK!!!" He comments on "race cars" all the time, so I didn't give him much attention. He continued..."Mommy, this is serious (like the WonderPets say...)I found MY race car!" I look to where he is pointing and guess what?! It was a fine Aston Martin "race car"! Boy, does he have good taste!

Summer Update - Lots of pics

Benjamin giving ME a kiss...he has become very sweet to her - giving kisses regularly without prompting from me
cupcakes with our cousins!! I wanted to show all our old friends some of our new friends...so here goes
Benjamin with Jacques (our playgroup buddy) at the aquarium on Pirate Day! Jacques happens to have a baby sister, Colette, who is very close to ME's age
Ben and Leighton (some may say his girlfriend) at her carousel party at LaFraniere Park. Leighton has a baby brother, Miller, who is a few months older than ME
our neighbors, 2 year old twins Dalton and Remy
We have been going to Morning Call for beignets on the weekends...Ben LOVES it and can eat a whole order by himself!
Ben in his shades ready for the beach...notice he has everything that means anything to him in his hands...his paci, Allie, and Lemonade - like we would leave any of those items behind!!
Mary Elizabeth sleeping in her carseat during a swimming party at Aunt Emily's house...so sweet!
ME on her beautiful quilt her Aunt Emily made for her
The cutest little puppy I have ever seen...Ben got his face painted for the very first time at the Greek Festival with his Daddy a few weeks ago. Seth said he was very serious the whole time and sat very still.

We have had a very busy fun-filled summer so far. Our family spent a long weekend at Orange Beach, where Ben LOVED jumping the waves...and ME LOVED sitting on the beach under the umbrella with her Nana. We also went to Rosemary Beach to celebrate the wedding of one of my closest friends, Leigh Erin. Our play group is continuing to meet regularly here, going to the Aquarium, parks, each others' houses and the sno-ball stand. We have been blessed with new friends here in Nola (both for Ben and ME as well as me!). Ben took another round of swim lessons and is now officially swimming a few feet underwater (he is amazing!)...we were working on lifting our head up to take a breath at the end of our lessons. ME's therapy is in full-swing...and we have PT twice a week and OT once a week. Seth gives her a long massage every night after her bath (which she LOVES!), and we are trying to bring her swimming as much as possible. I will do a posting later on our therapies, as well as our therapists. Life is moving so quickly here, Benjamin will start school (Mother's Day Out/Nursery School) in September. I may be more excited than he is...it has been tough juggling ME and Ben in the mornings...and I am running out of things for Ben to do. And as most of you know, there is nothing worse than a bored 2 year old!!!