Friday, November 12, 2010

The Truth.... Update on Last post

In my last post I wrote about William starting the Ketogenic diet for seizure control. We finally received a date for his hospitalization; December 6-10th. I debated about putting the start date off until after the Holidays but finally decided the sooner the better. Unfortunately his Holiday will not include any sweets... poor Will. No sweets and very minimal carbs but lots of love and kisses and hopefully less seizures. Hopefully more alert time as well.

As for my breasts... (I think mostly females read this blog; but if you are a male...sorry) the concern my doctor and I had over a lump turned out to be nothing major. I spent over four hours in a local breast clinic getting many mammogram pictures and a ductogram. Anyway, I have to go back for another test in a week but it's nothing too concerning. I will not go into anymore details. So as I recently told a friend; back to worrying about my children and not myself..LOL

I recently emailed some parents from the Lissencephaly loop about some of my concerns for William's development. The people I have connected with through the loop have been such a huge support to me even though I have not met any of them in person (yet). This is the part of my blog post where I am going to be bluntly honest; there are so many challenges in raising a child with severe disabilities. William has my heart.... there is no one I love more than he and Ella. He is a beautiful and sweet boy; who I love to be with. Yet most days I feel a sadness that I have to overcome. Everyday I grieve that my son is not able to roll, sit, walk, talk, eat without choking and aspirating, grasp objects, see well, laugh, or even be comfortable and at peace without seizures.

Today my sister Katie and I brought the twins to a playground; it was a beautiful Fall day. Ella found a little friend to chase around. After the boy left she came up to me nearly in tears and said, " why did he leave.. I need a boy to play with." This said by a girl who has a twin brother.... My heart aches. It F*&^ ing aches and I hate it. William should be the one running around and laughing with her. I take a deep breath and do what I can... I push William in his jogger and we chase after her, I put his tomato seat into swings and bouncy cars ... but he is getting too heavy to carry around.

That being said (judge me as you will....) I work so hard with my son and grieve that he is still at a 6 month level. Especially now that he is in the pre-school system; where he is being compared to his typical peers and expected to meet goals and objectives that are so hard for him to attain. It's so hard to see my son struggle with basic things others do so easily. I will continue to work hard EVERYDAY being his mom/therapist but at the end of the day I only want to hold him close to me... cover him with kisses and whisper, " I love you so much just as you are." And I do... but it breaks my heart.... everyday.


  1. I just accidentally deleted all my comments!! grrrr... thank you to all those ladies that posted encouraging comments. Jen, Carleen, Holli, Liz, Cris.... thanks ladies for all your support.

    erin and the twins

  2. I really, really understand this. My twins are similar. I could go on and on, but just know I'm with you. Completely understand.

  3. Also, yay for keto diet! I hope it works well!