Typo

I posted on Facebook a few days ago about a story that a lady wrote about parents that have special needs children. In that story, she mentioned that she doesn't understand how we do it. I had a friend comment and I couldn't agree more that we do it because we love our children. I never considered it a choice if I am going to be Skylar's mom or not. I found out that she had a severe disability and the question wasn't do I still keep her or not. It just becomes your way of life like God gave you a manual on what you're supposed to do. Its kind of crazy but all I've ever raised is Skylar and I know how to care for a baby but I have no idea at what age a child is supposed to start talking or walking. I don't remember what age they can start eating baby food. It's the milestones that I think parents take for granted. It is expected for them to do all of these things. It's when they don't that you realize how important the small things are. Skylar will never walk or talk but she has conquered her own milestones and for me it's better than a first step because she shouldn't be doing as well as she is right now. I had a doctor tell me that when I thought I heard her laugh for the first time to not get caught up in things like that because I will be setting myself up for a lot of disappointment. What they fail to understand is that I have high expectations for my child. I'm realistic about it but if I don't push her who is going to? I sit in IEP meetings and I advocate that they do more therapy and push her because how do you know that she will never do something if she's never given the opportunity to try.  If I'm being honest though, I would ask God why all the time. It took me a long time to understand but I understand why God picked me and I'm glad he did. She is my other half, my soul mate, the piece that completes me. She needs me to care for her, be her advocate, sit with her, protect her, ensure that she has the best life she can have, stay up all night with her when she's not feeling well, praise her, pray for her, comfort her, fight for her, push her, educate myself so that I can make sure she's getting the care that she needs, know her medical history from pregnancy to now, remember all the surgeries, medications, hospital dates, and every bit of essential information that will be asked a million times by different medical professionals, etc. No matter what all I've done for her she's done more for me in her short time than I could have ever done for myself. She's made me a better person and she has given me the drive to fight for things that are most important. She has give me purpose and more compassion. I think that God sent me Skylar because he knew that I needed her probably more than she needed me. I almost think that it's just been Skylar and me for all these years because I didn't have enough love to give. I dedicated everything to her and there wasn't room for much else. God has a plan for me and I know that. I think that God introduced Clint to me at the time that he did because he knew that I would be here right now and that I would need someone to because he knew I couldn't do this alone. I don't understand God's plan and I can't say that right now I even like it but I just pray that he sees me through it and because that saying that God will never give you more than you can handle is starting to feel like it was a typo.

I Can Do All Things Through Christ Who Gives Me Strength!

OK everyone, I have a lot of living to do in an unknown amount of time (planning on several several years) and I'm going to need all of the help I can get from my mom and anyone else who wants to help.  Keep in mind in everything I do, the most important things are that I'm spending time with my mommy and my family.  So with that said, please help me come up with ideas and if possible, help me complete the items on the list and/or share in the experiences with me. Nothing is too crazy and trust me when I say this, if you can dream of it for me, my mommy will find a way to make it happen.  All ideas are welcome and if you can help with any of these please let me know.  **We thought we'd add a few more things. I want to do it all** In no particular order, this is my bucket list:

I CAN HANDLE THESE MYSELF, BUT WOULD LOVE IF YOU JOIN ME IN COMPLETING THEM:
 
See my mommy get married so that I know she will be taken care of
Go on a road trip
Throw a party and invite all my friends & family 02/15/2014
Attend a birthday party
Attend a sleepover 02/21/2014
Go hiking
Go camping & make smores
Get a mani/pedi
Go to a waterpark
Get a massage
Ride a bicycle
Have as many birthday parties as people want to have with me
Get my drivers license
Go hunting
Go bowling 02/13/2014
Go to the beach
Go to a concert
Go on a boat
Get a tattoo
Go to a Professional baseball, football, or basketball game
I want to be a big sister someday.

Capture at least 1,000 hugs & smiles - don't be shy, hug me and say cheeeeeese :-)
Be the flower girl in a wedding
Ride a horse
Graduate elementary school
Graduate middle school
Graduate high school and walk across the stage and receive my honorary diploma
Run a 10k
Walk in an awareness event
Throw out the first pitch at a baseball game
Be an inspiration to others and then continue to be an inspiration to others
Teach the world about Schizencephaly
Help increase awareness about severe birth defects and Schizencephaly
Meet someone famous
Visit the White House
Be on TV
Be on the radio
Be in a movie
Be in the newspaper 02/13/2014
Be on the Ellen Show
Have a song recorded that was written about me



PLACES I'D LIKE TO GO TO/VISIT/SEE:
Go to the Grand Canyon
Go to Niagara Falls
Go to NY City
Go to Hollywood


Wear a sombrero while having happy birthday sang to me at a Mexican restaurant
Be in a school play
Learn to write my name

Invent something
Get an allowance
Play a joke on somebody
Make a mold of my hands & feet for my mommy
Play in the sand
Celebrate all of the holidays (even if it's not time to celebrate them)
Go to the zoo & feed the animals
Date night with mommy
Perform in a ballet recital
Join a sorority

Added:

Publish a book
Fly a kite
Go on a scavenger hunt
Plant a tree or garden so it will always be there for my mom
Lick the bowl of cake/brownie batter or the beaters
Have a lemonade stand and help raise money
Have a picnic 
Go to Prom or a dance
Ride a Limo
Drive a car 
Get Baptized


THE LAST THING I WANT TO DO:
Overcome my illness
But if not, then I'd like to take one last breath, then take one more before I go to live with my Great Grandparents, Uncles and Aunts that will reassure my mom that I’m okay and I love her.

Meet Skylar

Skylar is an amazing 7 year old who is about to celebrate her 8th birthday. She is the love of my life and has brought me more joy than I could ever imagine. Skylar was born with a very rare birth defect called Schizencephaly. In the past 7 years, she been diagnosed with seizures, failure to thrive, cerebral palsy, profound development delay, dysphagia, multiple food allergies, central adrenal insufficiency, cortical blindness, and hydrocephalus. She’s had multiple surgeries for her VP shunt and recently had a VNS placed for her seizures. She’s been in and out of the hospital her entire life. She does not talk or walk, she is unable to sit independently, and she requires 24 hour care. However, she is the happiest girl in the world. Despite what she has been through she is continuously laughing and smiling and she has a laugh that will melt your heart.

Skylar might have challenges but that doesn’t stop us from doing things. She’s part of a special needs cheerleading squad and a special needs dance class. She’s played softball and has been part of a few 5ks and has also been part of the Arkansas Angels Pageants. I’ve always had the mentality that if she can do it and she feels up to it than we are going to do it. I don’t let her disability define who she is or what she will be part of.

I’ve raised Skylar by myself. I’ve been a single mom since the day that I had her. She has been my entire world since the day she was born. My life has revolved around hospitals, teacher’s meetings, constant emails, texts, and phone calls back and forth to nurses and therapists, more ER visits than I ever wanted to imagine and more doctor’s appointments than I’ll ever have in 5 lifetimes. My life has revolved around her in almost every aspect and I wouldn’t have it any other way. Being around her makes everything better. No matter what kind of day I was having I knew I could come home and her smile and laugh would turn any day into a perfect day.

For the past year, I have been faced with the challenges that one day she won’t be here. I had always thought that Skylar might not live as long as me but I still imagined her growing up. However, over the past few years Skylar has really struggled and I was faced with Palliative Care and now I am faced with Hospice. These are two words that when they were mentioned to me it knocked the breath out of me. I wasn’t expecting it either time and it hit me like a ton of bricks. I knew that Skylar was having bad days and I knew that she was struggling but I never thought that it was precursor that she’s having disease progression. I have done things that I never thought I would have to anytime soon. I have picked out a casket for my daughter and picked our burial plots and planned what type of funeral I would want for her. I wanted to get everything out of the way so that my main focus could be spending time with her. She has wonderful days and the bad days are pretty bad. It breaks my heart every time she has a bad day but I am thankful that she is having more good days than she is bad. I’m terrified of what it might be like when she starts to progress and what my life will be like without her in it. The fact that she’s been the biggest part of my life for so long I’m not sure what my purpose is besides being Skylar’s mom. Right now my biggest concern is making sure that I spend every second that I can with her and making sure that however long she has left on this earth that I make it the best that it can possibly be. I hope that she’s here for years and years but I will cherish any and all time that we have together.