Lost Time

Today was a terrible day with Aidan. I don't even know this child I saw today. I know this is a result of the yeast coming out of his body and the doctor told us to expect this, but I didn't think it would be this bad. He is this wild child who is throwing things at our heads and smacking us in the face. He has a tantrum at every little thing, and is beyond frustrated at his lack of abilility to communicate with us. He is making this screaming noise that sounds like it is coming straight out of a horror movie. As difficult as this is, I know it means that the nystatin is working!

I feel that Craig and I have entered a new stage in our recovery of Aidan. First it was denial and now it is anger. I am ANGRY! Angry that I have lost this time with my son. This is the time when we are suppossed to be enjoying our child at this age. Time when we should be talking with our friends about the silly little things he said or did today. Instead we are parents with little benefits. I know that sounds harsh to say, but any parent knows that when you put a tremendous effort into your child you reap the rewards. Just like putting a ton of planning into a party or a trip to disneyland to see the joy and reaction on your child's face. Instead, we decline invitations to go do things like the beach because we know how difficult it is. I know this sounds depressing, but I created this blog to help others as well as help myself and sometimes it helps me to vent on here. So I will end with this, I know that I will never get the lost time back with my child, but I know that because of the path we are on now, I will have many beautiful moments in the future to look forward to.

Give Thanks in all Circumstances

I continue to be encouraged by all the people who have reached out to us during this difficult time. Many who have never met Aidan have written me to tell me they are praying for us. Friends have even changed the way they vaccinate their own children because of Aidan's story.

I feel so encouraged to have so much love and support. Tonight I received another letter of support at just the right time.

I finally received my written evaluation results from the P.h.d who evaluated Aidan several months ago (the San Diego regional center takes a LONG time), and I was wondering if I ever was going to get them. Although I already knew what the results and the referral was, it was still hard to see it in writing. When I saw the diagnosis box next to "autism" checked, my stomach turned. (Although they will not give a formal diagnosis till 3 years old.)

As I continued to open the mail I saw a good friend of the family had written me. This card was saturated with the most inspiring words and scripture. I just want to share a few parts that touched me the most. She wrote to me............."In the ever-changing circumstances of life, there is a faithful never changing God in control. Their isn't a detail that escapes His eye, a trial that doesn't touch His heart. Every moment of your life is in His care, and He will lift you upon eagles wings to soar above the storm."

She finished her letter with one of my favorite scriptures. 1 Thessalonians 5:16-18 "Be joyful always, pray continually, give thanks in all circumstances, for this is God's will for you in Christ Jesus."

So tonight I give thanks to all of you, and you know who you are, who have reached out to us during this storm. May His presence be your peace, as it is mine.

I won't let go

We are in the second week of the nystatin. This is removing all the overgrowth of yeast in Aidan's intestines and it is literally coming out of his pores. He has a rash on his face and isn't feeling himself, but that is to be expected since his body is detoxing all the yeast. While we have had a tough week, the most wonderful thing happen tonight. I was laying on the bean bag in the playroom watching Dora with Aidan. I closed my eyes for a moment to drift off asleep and I open them to see Aidan looking at me. He then proceeded to climb on me to cuddle and put his cheek next to mine. He layed with me for the rest of the show! He has never been that affectionate with me before, and he actually wanted to cuddle! I feel so happy.

There has been this Rascal Flatts song that is my song to Aidan. As I lay cuddling with Aidan these words of the song came to mind............."I will stand by you, I will help you through, when you've done all you can do and you can't cope, I will dry your eyes, I will fight your fight, I will hold you tight, and I won't let go.

What could have been.

We went to see Dr. Centers today for a weekly treatment for Aidan. Every time I sit in the waiting room I see an array of children that the Osteopathic Center is treating. It is always heartbreaking to see these children who suffer from many different illnesses and many of them are much worse than Aidan. But today really affected me. I saw a little boy who was autistic. I'm guessing he was about 7 years old. As I sat there and watched him pacing the waiting room, opening and closing the door, clicking his mouth, and flapping his hands, I could not help but think to myself "could this be Aidan in 5 years?". Then I have to remind myself that this will not be Aidan in five years because we are doing something right now. So many parents wait. Waiting is the worst thing we could do because time is precious! We didn't listen to all those who told us "he is fine", "I'm not worried" or just flat out "he doesn't have autism".

To all those parents out there like me, I am sure you would agree that that is the worst thing people can tell you. Especially when you know there is something wrong with your child. It is like a slap in the face. It completely invalidates all we are doing to help Aidan. Did the parents of the boy in the waiting room listen to all the fools that told them "he is fine"? It just makes me so angry. My message to all the moms like me out there is to always listen to your motherly instinct and not what any one else tells you. Sure I wanted to think my son was fine, but deep inside I knew he was not. The sooner we can acknowledge there is something not right going on with our children the sooner we can help them. To ignore this is truly doing them an injustice. Every time I go to the Osteopathic center I see a reminder of what Aidan could have been and it breaks my heart. But pushes me to never give up.

Legoland

We went to lego land last week with Aidan and we had such a great time. Normally when Craig and I would take Aidan to an amusement park we would leave with either me in tears or us both fighting. Let's just say at times it was pure torture. This trip was different. This was a different little boy. The best part of the day was when Aidan sat on Craig's shoulders and watched an entire show. It got even better when Aidan began to laugh at the funny parts. Yes, he actually got the humor! In Craig's words "I almost fell to my knees when I heard my son chuckling on my shoulders....then laughing even harder and harder as the joke got funnier." It was such a great moment for Craig. This was a day that we really got to enjoy our son. Something that I've been missing for a long time.