The other night....

Eli asked, "Mommy, when will Lilah be a kid?"


I said,"she IS a kid."

He said, "when will she walk, and talk, and run?"

I said, with a heart full of emotions, "that's why she is in therapies."

With a sad look and disappointed tone, he said, " I know."


So, before I finish the rest of the story and what I said to Eli, I wanted to share a few things.

This life is hard on all of us.

Everyday I wonder if I am spending the right amount of time with the older three, helping them become all they can be and live happily too. Then I wonder how this affects them. As you have just read, it does. Eli, and his older sisters, desire from the deepest places that Lilah will play with them, talk to them, and be with them. They love her so much. They also desire normalcy, which I do my best to provide.

And this is the reason I started this blog. It is a place for my emotions to be released. It is a place for me to tell the truth and share the good days and the bad...and the "how do I handle this." I share it all because I know I am not alone in my emotions. Many of you may not get me, and that is ok. I am not looking for feedback or comments about how I should think, feel, or act. This blog is like my diary, but I am airing my transparency for others who may need it, or for those who have walked on this path and can help, AND for those who have no idea. For those that live life without the stares, the questions, and the hurt. Maybe me sharing will help them look at their own children and stop complaining about how wild they are, or how naughty they are, because their child is acting out or talking back.

I got an email this morning from a friend of one of my sisters who started reading my blog. She has a child with delays, seizures, and low tone. She thanked me for my blog. She thanked me for writing what she feels so often and cannot wrap her head around. She also asked me how do I handle the guilt of one child doing so much, and another will never do those things.
"I'm not the best at putting my thoughts into words, but reading your blog has been so wonderful!!! I have so many swirling emotions (good & bad) & it is hard for anyone to help me get through the bad, but reading your words is like reading my own thoughts sometimes. I have an almost 2 year old son & have struggled with the happiness & excitement I feel of all his milestones mixed with the realization that Taylor will never do those things. How does anyone ever balance that guilt!? Anyway, just wanted you to know that you help to brighten my world. Lilah is BEAUTIFUL!!" THANK YOU, J, for your comment. THANK YOU!!!!

And that is why I share my emotions. Not for people to try to comfort me. I share it because I am real. I do not wear a mask and live behind the," all is good" mentality. I share it because there are absolutely AMAZING days and their are also very real, very bottom-of-the- pit days.
And only those that live in Holland really get it. And for those like me with one foot in Holland, and another in Italy...it is hard too.

You see your children progress and improve at rapid speeds...and you watch your child fight with all of her will to accomplish tasks that are taken so for granted....eating, spoon feeding, walking, talking.

What I wouldn't give to hear Lilah, at 2.5, talk to me and argue with me like most 2 year olds do. What I wouldn't give to hear her voice. What I wouldn't give to remove her fear and watch her walk without assistance. What I wouldn't give to remove the stares and glares from her life.

But, I cannot remove them....

I must "cowboy up" and keep being MAMA BEAR and fight for her....and for me...and for my family.


I told Eli that I know he really wants her to be "normal." I told him that I know he wants her to play. I told him that I know he wants to see his sister succeed. Eli is Lilah's protector. But, he is also a kid who sees and recognizes the "differences" even when we tell him frequently how she was made this way because God wanted her to be like this. That she is perfect. Eli knows.

This life doesn't just affect me, the Mommy, the caretaker. It affects my marriage, my home, my children, day to day....all of it.


I am not complaining. Some may think that I am...and that is ok. Other people's opinions of me are NoNe of my business.

I am telling it like it is....


When Eli asked me that....it broke my heart. I told him what a good parent should say, and I explained all the emotions, and we talked many times about it...when the therapists came, when we went to Backus, etc. I explained that this is why she goes here, works hard, does this, etc. BUT, inside I looked up and asked God Why again. Why her? Why can't she play with her siblings like other kids can? Why can't she fight with them? Play, run, jump, dance, sing, talk, walk?

Then I heard my own voice coming out of my mouth in reply to Eli, " I know. She'll get there buddy."

And I pray she will....