What is Normal?

When I became pregnant with my first child in 2007, I had no idea the journey I was about to embark on.  I felt that I would be like every other mother I knew and have that ‘normal family’.

It didn’t turn out that way and honestly, I could have never imagined the hurdles that we would have to go through over the last 11 years.

My daughter was born in 2008, health and happy.  For the first two years everything was perfect. One day, I noticed a small tremor in my daughter’s hand.  That would be the beginning of a life altering journey. The doctors were unsure what was causing this and within days she was unable to walk, stand, or sit.

Finally, after two weeks we were able to get a diagnosis. My daughter had cancer. She was going to have treatment, surgery, scans, and medications. I was completely overwhelmed.  They prepared me for the idea that my child would die. It took years of fighting, worrying, doctors, and a miracle that finally saved her.

After that experience, I really didn’t feel that I could handle having another child especially after everything that had happened.  I did not know whether I could go through that all over again. I still live in fear that my child could die every day. In 2012, my husband and I made the decision that we would have another child.  I became pregnant and miscarried within in weeks. I was devastated.

I really thought that this was a sign that I was not meant to have another child. I pushed forward with life. Within a couple of months, I was pregnant.  I gave birth to my son, RJ, in February of 2013.

He seemed happy and healthy and I thought everything would be perfect.  A child that would be ‘normal” and healthy. A child that I did not have to worry about dying before me.  The doctors reassured me that he would be fine that and that the experience with my daughter would not happen with him.

As he developed, I noticed there was something wrong. My daughter did not develop at regular milestones either, so I felt like I did not know what normal development milestones to look for.  At 18 months, he was not talking, pointing, or making eye contact. I knew something was wrong. I took him to the doctor who mentioned autism.

At that point, my friends, family, and myself kept saying that he is just developing a little slower than others and it will be fine.  As the next few months went by, I knew that was not the case. Autism was the reality that I now faced with my second child.

I was angry.  I wanted my child to experience a normal childhood and have that normal life that I had wanted for my daughter.

I came to the realization that the child I thought would be normal in comparison to my daughter would be the child with the harder disability.

One day, my husband asked me what his disability changes for us? Are we going to love him any less? Are we going to give him away? I answered immediately no.  He said then we just need to move forward and get him what he needs to be successful. That became the moment that I accepted the new reality of my life with my children and the shift that I had to make.

I had spent years focusing on my daughter’s recovery and now I had to focus on my son.

Now, I live in the world of nonverbal autism and it has changed my life in so many way.  I push forward feeling that I was meant to have these children. I am the mom of a cancer survivor and special needs child.  They both are happy and give me great joy each and every day.

I am their advocate and voice.

RJ has made so many strides and completed milestones that I did not see happening when we started the autism journey.  He will be starting kindergarten this year which will be a new experience for our family.

I have come to realize that there is no normal.

My children will persevere through everything and none of this matters to them.  They are happy just the way they are and live each day without care for my perceived losses for them.  So, I have done the same and support them in every way possible.

I look forward to the future and do not fear what is ahead.  Our family can make it through anything.

Written by, Jillian Shannon

I am Jillian, a 36 year old mother of two that lives in Eastern Oregon.  I have been married to my husband, Rob for 14 years.  We have my daughter Macee who is 9 and my son RJ that is 5.  I have had a very unique parenting experience which you will read in my story.

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