The unknown

I promised a blog tonight and got distracted... so I will try to be short and sweet.

We went to vegas this weekend to visit our brother-in-law, sister-in-law and niece.  All in all it was a fantastic trip.  Hayden took a little bit of time warming up to being away from home--but once he realized "this" (or "sis" as I like to call her) came with us he did just fine! My niece is just the cutest little thing and the kids were so much fun to watch together! We did, however, forget to bring tip jars to Freemont (apparently the kids are destined to be movie stars! What popular little things they were!)

The ending to the trip was not so grande.  I believe for those who follow babycenter you will understand when I say it was filled with Flying Monkeys and Unicorns! 

After much needed reflection during the trip home, I reminded myself that my focus really truly needs to be on my children and what is best for them. I am grateful for the support system we do have and welcome others who want to join us in this journey!

I am, however, done with non-sense drama. No exceptions.

Anyway, Yesterday Hayden saw the developmental pediatrician.

I guess what bothers me the most is the unknown.  We know he has a chromosome deletion...We recieved a report that confirms it is a deletion of 18q21.1...but we still have no idea what this means for Hayden! All of the conditions are fairly rare and research is still underway regarding the conditions.  I have been in contact with a genetic counselor from San Antonio. She is with the Chromosome 18 Registry and Research Society. I suppose it is a start...

We also did not qualify for Long Term Care-- so I have reapplied...

Lastly, Hayden did not pass the Modified Checklist For Autism in Toddlers (MCHAT) and has been listed as "at-risk". He will be further evaluated through the next month.

To be honest, I am not too concerned.

Let Go and Let God...

A few days ago a dear friend of my posted on her facebook status:

"Let go and Let God..."

Tonight I was spending some much needed snuggle time with my baby girl.  As I lay on the floor and listen to her sweet coos I asked myself how it was that two precious little things had completely captured my heart! 

Because the babies are only 13 months apart, the running joke is that my next one will be on it's way soon. Since we have gotten the news about Hayden, I have put a lot of thought into whether or not I would want more children. I would certainly want genetic counseling to just see if we are carriers of the chormosome deletion at the very least---and from there I want to assure that my husband and I make a very informed decision as to whether or not we decide to expand out family.

(For those of you who know me well, this probably comes as a surprise to you! That's right I went from wanting 6--to wanting 4--- to now being 100% happy if these are my only 2!)

Now, I am going to share a story that many people do not know.

When I found out I was pregnant again it was shortly after Hayden had been released from the hospital and right at the peak of his seizures. I was stressed...sad...scared... and I certainly was not expecting that news!   I kept very quiet during the first trimester. My husband supported my wishes to continue to have our focus on Hayden and his well-being at that time.  Together we decided to not tell anyone about the pregnancy until it was definite and until I had more time to organize my thoughts and feelings. 

I am not proud of my reaction. I look at my daughter now and think to myself "How for one second could anyone not want something so perfect."  But, I am also not ashamed to be honest with myself and my emotions.  I was angry.  I thought God was trying to punish me... I thought he was sending me a "replacement" for my little boy.

These feelings remained strong through most of the pregnancy.

As time went on the pressure did begin to ease...the excitement slowly evolved...

But, it wasn't until I held her in my arms that I finally realized-- She is not a replacement at all. She is a much needed addition to our little family. Yes, prior to her grand entrance, I didn't even know we had such a large part of our life missing.

So tonight, with my sweet baby girl in my arms I reflected on the past...and daydreamed about the furture.  It occured to me...all I need to do is let go.....and let God.

Parent of a child with Special Needs

Today I was just that.

I stepped out of my element for the day and attended a conference as a "parent of a child with special needs." I consciously made an effort to leave work at the door and be just "Mom".  I wanted to open my heart and my mind to the feelings, emotions and questions that are typically present when you have a child with special needs.  I wanted to relate to those that heart ache with worry for the future of their child...

With the absence of these feelings, I would like to clarify: I am not naive. Just confident. I had a father asked me if at any point I was in denial. There is no denying that Hayden has special needs.  Maybe it is because I will not let that define him; I will not let a diagnosis or a disability be his crutch.

Without a single doubt in my mind I know Hayden will grow to be something wonderful. 

I enjoy meeting other parents of children with special needs and will be spending some time looking for parent support groups and other bloggers going through similar situations such as mine.

Also, this week a dear friend of mine posted a blog pertaining to Autism Recovery.  Now, Hayden does not have Autism. However, her outlook inspires me to continue with my advocacy efforts and to push through the coordination of proper services, while always remembering that Hayden will be just fine the way he is, and I too am OK with that.


Today I was just "Mom".