Happy Mother's Day! On finding your strength.

If you are a mother or are close to your mother, then you know how special this day is. You also know the true meaning of unconditional love. A mothers love is so deep that she would do anything for her child.

As a daughter to an extremely loyal mother, I know this, I feel this, I aspire to show this to my children, every single day of my life.

People have commented so many times on my strength during this difficult time with Anthony's health. Though I agree I am strong, I have to stop and examine how I got here. It wasn't strength right out of the gate. It has taken time..... it has been a process.

There were many, many dark days for me. Before writing this blog, before many people really understood the depth of our trials.

Days when it was hard to get out of bed. But I did for the kids. Days when I didn't take a shower, heck I rarely brushed my hair. Brad would come home and I would hit straight for the sheets.

Watching your child having spasms is an extremely helpless feeling.  I would have to time them and track them.   There were days when they lasted up to 20 minutes and happened five or six times a day. Those days I didn't feel strong. I felt pretty damn weak. And I was.

Like the time I saw him doing it on the monitored and I wanted to scream. I didn't want to go in his room. I was so angry.

So, when we talk about strength.... it's a process.  I feel honored when people tell me I am strong. But I also feel an obligation to showing my weakness too. It's difficult for a mother to watch their child face adversity. But it's a small price we pay for loving unconditionally.

As mothers we do what we have to do.

So, if you have a medically fragile child, or if someday you do, remember this....

Push through the weakness....you WILL find your strength.

...and then there was HOPE

The boys are sleeping, just had an incredible meeting with a friend in Premier and delivered my last Hopeful necklace.

And I am feeling amazing.

It's crazy how during such a DIFFICULT time, I can feel so good.

...because of hope.

We never let go of hope, and today we got some incredible news regarding Anthony's diagnosis.

You see, on March 4th we got news that Anthony had a very rare genetic mutation.  So rare that there are only 11 known cases in the world.  So, obviously there is not a lot of information out there.  At this meeting in early March the doctor told us "You, the parents will also get tested for this.  If you have the same mutation,  that you passed this to him and it may not be the cause of infantile spasms, since the two of you are living with the mutation and do not have problems."

The doctor told me not to go on the internet and look up the mutation.

I did anyway.

I found a very small group of parents (9) whose children are living with this.  All the children have a different variant of the gene mutation, including Anthony.  I talked to one of the moms one night and learned about  the horrific mutation and her daughter's struggles with it.

March was a pretty tough month for me.  Brad and I got our blood drawn to see if we carry the mutation, but I didn't put any hope into it.  This mother told me it is de novo mutation that is not inherited and none of the parents passed in on to their kids.  So all of March, I pretty much prepared for the life that Anthony could have with this mutation.

Once we were in the hospital for 3 weeks for the bought of meningitis, I did a lot of soul searching.  I began reading some inspirational testimonies, dug deeper into my faithful Premier Designs Jewelry business and began challenging my life's purpose.

Once we got home I realized I did not care the outcome of Anthony, I just want Anthony to be just that....Anthony.  I want him to just be the best that he can possibly be.  If that is him never saying a word in his life, I didn't care.  The bottom line is that Anthony is HERE, he is here, for a reason.  Smiling at me and making a HUGE difference in my life.

I finally accepted it.

I accepted the gene mutation and the nasty things that may come with it.  I began to feel amazing again.  I felt like I had a deeper purpose, and Anthony was leading my way.  It was actually deeper than anything I'd ever felt before in my life.

And then we got the phone call.....

"Mrs. Kovalovsky, the epilepsy panel came back.  You do not have this genetic mutation, but your husband does.  He has the exact same variant as Anthony.  It is very unlikely that this nasty gene mutation is what is causing the infantile spasms...."

and then....

there was HOPE.