Friday, October 3, 2008

A Warriors Destiny

For some reason and I don't know why, I have been hesitant to post some feelings on the one thing that consumes my every thought right now. I'm just gonna lay it all out, my story and what I'm feeling. Here goes... In March of this year, my 20 month old little girl was diagnosed "at risk for Autism." This conclusion had been reached after 5 months of excruciating tests, meeting with doctors and ALOT of money.

Saylee was always a good baby, always very quiet and easy going...great sleeper too! I didn't breastfeed her very long (I'm a quitter). Also part of it was because she was very stiff all the time. She never liked to be cuddled or rocked to sleep, it made me sad at first but I just referred to her as my "little robot" and got over it. She reached all of her first milestones within the expected limit and she was a happy little girl. For some unexplained reason (I still don't know why) I never had her vaccinated. I wish I could say it was my motherly gut giving me a bad feeling, but Im sure it was pure laziness. This plays into my story later.

Around 13 months of age, I noticed some weird behavior. She would roll over on her side and stiffen her entire body: Legs together, arms together. Im talking white toesy spread like stars! She would shake because she was flexing so hard. I thought it was wierd, passed it off as "little robot" behavior and moved on with my day. After a few weeks these incidents started occuring more frequently. I started to think she was having some type of seziure, this was happening 10-15 times a day, so I decided to do something about it. Thats when the worst day of my life happened.

She was 14 months old when I took her to the pediatrician for the first time (you can judge me later.) I saw the nurse practitioner and she ran through all the routine questions with me. When we got to the part where she asked when Saylees first word was, I simply replied, "she hasnt said it yet." Instantly she informed me she was concerned and that Saylees hearing needed to be checked. Now, Saylee is an irritable little girl, she doesnt liked being touched or forced to do anything. At this point Im 8 weeks pregnant with Grady and my hormones are on high. I cried as I watched 2 nurses pin my daughter down just so they could check her ears, they were screaming her name in which she was not responding. The NP left to get the head nurse to inform her of the situation. I only thought to myself, "what situation?" I was so confused. Once she arrived she decided to do all these tests again to confirm any suspicions herself. This time Saylee started throwing up because she was crying and screaming so much. Im crying right now as I write this because the sheer terror on her face and her screams still haunt me to this day. After the nurse decided her hearing was okay, it was time to catch up on some vaccines. I know these ladies were already judging my level of horibbleness because I had yet to give my child even one vaccine, I could see it in their eyes. After Saylees horrible ordeal, I had to pin her down to help give her 6 shots (4 live viruses). I left there crying and calling Dustin telling him I will never return to that place, and I havent.

3 months later after EEG's, MRI's and multiple visits to a pediatric neurologist, I was told that my daughter was not seizing, but masturbating! Oh sure, this will make any mother feel better, right? I couldnt phathom this idea. They told us it was a form of self stimulation, I thought, "why the heck does she need to stimulate herself?" The neurologist strongly urged us to start early intervention (at this point no language yet) and after some heated discussions between Dus and I, we decided to give it a go. This brings us to March of this year, because of her "at risk" diagnosis, she qualified for tons of state assistance, we were blessed for that.

Fast forward to today. Saylee sees three therapist a week, (speech, OT, developmental) and she sees a chiropractor who practices applied kinesiology twice a week. I started her on a GFCF diet (gluten free/casein free) 6 months ago and she takes anywhere from about 6-9 supplements a day. (calcium supplements, cod liver oil, metal detox, enzyme powder, etc.) As you can imagine its been extremely hard. Amongst all this Ive had a brand new baby at home. My close friends and family know that we have seen AMAZING results with our efforts thus far. She clealy is still delayed but six months ago she was like a deaf mute, she didnt make a sound. Now she babbles so much, its starting to get annoying! (not really) I knew a six month eval was required and an offical diagnonsis would help our chances of receiving extra benefits so we set her up for a full psych eval.

Its amazing how much two little words can change your life. I very much knew there was a chance of her being diagnosed with Autism, but to actually hear it... its extremely painful as a parent. Going from "at risk of Austism" to "Autism" itself just rocked my world. I felt more prepared than alot of parents. Im bitter. Im upset that it cost my family over a thousand dollars worth of painful UNNECESSARY tests for some quack brain doctor to tell me my baby is masturbating. After her at-risk diagnosis, I read almost everything I could find on Autism and sensory disorders. I completley understood why my daughter was stimming (self stimulation) and It frustrates me to no end that a trained medical professional had absolutely NO IDEA what was happening to her. Im angry at myself as a mother for letting her receives those six vaccines (one was MMR). She obviously had sensory issues to start worth and I destroyed any chance of her fighting it by breaking down her immune system and making it worse. Im bitter that people are judgmental and stare at you because your daughter is running around with a plastic spoon in her hand. That the minute something or someone would get too close to her she'd have a panic attack.

So heres the obvious "woe is me" part. I played that role for a few weeks. I was destroyed inside and felt like I had failed as a mother before I was ever really given a shot. I read a book about a mothers battle with her son and his fight with Autism and it brought me back to life. This is what I know. I know that losing my mom to cancer at age 12, that watching her slip into a coma and at times not know who I was, was mere preparation. I know that the reason I am such an "outgoing, never embarrassed funny kind of gal" was to prepare me, my entire life has brought me to this point, it was all pre-ordanied. When Im dancing inside a Lowes, singing Yo Gabba Gabba songs, my baby fat is jiggling in places I didnt know exsisted and people are leaving there aisle to come to mine and watch the crazy lady ALL to make my little kids laugh, I feel blessed. Im also blessed to know that the Lord thinks I am strong enough to guide such a sweet and powerful spirit through this life, Saylee is ten times the warrior I will ever be. Im blessed to KNOW IN MY HEART that my mom prepared Saylee to come to this earth and accomplish what it is that she is here to do. I am grateful for friends, some who can relate, some who cannot, who always give me encouraging words and reiterate to me that its FAITH that will help Saylee, not modern drugs.

I love my husband. The average rate of divorce in Autism families is 80%... I can see why. You never feel more tested as a parent then you do when something is wrong with your child and you do not agree with your spouse on a coarse of action. I have been blessed that Dustin cares. He didnt go into denial, he didnt throw himself into his work and leave me to deal alone. He is the first one to tell a complete stranger with tears running down his face that he loves his little girl no matter what. I swells my heart to think of the love and bonds he shares with our children. Dustin, I love you. I love you more than I will ever be able to say.

To Saylee... sweetie, one day I will sit down with you and tell you our story. I will tell you that you are perfect. You will know this because your testimony will confirm it. I hope on this day you can tell me why you did some of the things you did. I will tell you that times got tough but we got through it. We will cry, we will laugh, we will snack on M&Ms because we will be best friends. I will testify to you that all my strength, that all your dads strength was not enough to help, It was the strength of our Lord that carried us all through these times. And after we embrace each other and vocalize the love that is endless for each other, we will go shopping...


Lisa said...

A true mother in Zion is what you are!!! I am so glad Dustin had to leave his mission to find you (really his mission was just prep for the mission he was to serve as Saylee's father). Heavenly Father knows exactly what we need when we need it and you are what Dustin needed. Both of you together make the perfect team to help Saylee return to her Heavenly Father. You know I look back from the time I met Dustin and remember how much he wanted to serve a mission. He was not your average guy who said, "sure I will serve mission when the time comes". It was more like, "Are you kidding me I am so pumped to serve a mission can I go now!". Heavenly Father was well aware that Dustin was not the average guy who just wanted to serve a mission and be done. Dustin has been preparing for the things you have been going through for a long time.

Thanks for writing your feelings, it can be so hard to write how you really feel. You are so strong and are sooooooooooooo perfect for Saylee and Dustin. As a friend of Dustins I couldn't of picked a more perfect match for him! A great big hug when I meet you, ok:)

mandi said...

I really don't know what to say,than, you are truly amazing.I know I have said this before, but, Saylee is perfect,more perfect than us and the Lord has a special calling for her,and maybe these trials are truly more for us as parents, than for the children who have been given are the right mother for this,you are more patient than I will ever be.These past couple of months I have watched you transform.You have grown tremendously and I hope you know that it is noticable.I admire you and I feel privelged to be your friend. Love you lots

Taylors said...

I'm reading this with blurred vision as the tears won't stop coming. What an amazing mother and woman you are, Kristen! I have so much admiration for you. You have given me so much strenth today -- I am so fortunate to know a person like you.

Heywood Lovin said...

Wow I don't really know what to say. You are amazing! You are such a great example to me! I hope that I can be a great mother like you! Thank you for sharing your story. It will help so many! I love you and admire you!

CheLLis 'n' ALex said...

You are truly an inspiration! What a sweet spirit you are blessed with to raise on this life and be with for eternity. I hope that you can continue to tell you story and share improvements that you see. She is a beautiful little girl!! My heart goes out to you, you are a great momma, and Heavenly Father knows you are amazing and knew you would be best for Saylee, and she for you. Im so happy that you and dustin are a team, and work together through this. Thank you for sharing. I love ya!

Jeff and Kristy said...

I am so greatful we are going through this together. I know it is a long road ahead but there is so much help and great success stories that I know it gives me a ton of hope. Saylee is a doll and has already made great strides. It can only get better from here. Seriously.I can't wait to go to DAN and tell you all about it! I am here for you and love you tons. Let me know if you need anything.

Remember - HOPE, FAITH. LOVE AND RECOVERY. We can do this!

igotluckey said...

You are the best mother and Dustin is the best father. You are so strong. <333

Payne Family said...

Your family is amazing. I don't know how you do it. I can only hope that I would be able to be as strong and confident as your are if faced with such stress.

Love you guys!