Sometimes I cry...

I do my very best to stay as positive, up-beat, happy, excited about how far Lilah has come. I do my best to remember what we "do" have.

A VERY happy, sweet, amazing gift from God!

Sometimes, the reality of "living in Holland" just hurts so bad. Sometimes hearing the words "delayed" stings to the core of my being. And its not just me. Something happened today and when I called Aaron to tell him, FINALLY his truth came out, "This is hard. We wanted a "normal" child." And that is just it. We didn't have months, days, weeks, to prepare for having a child with needs. God gave us this gift, and we were left alone to navigate these waters.

Having a child who "looks" different brings about all kinds of "negative" attention. People stop me in every single store and ask questions about Lilah. Everything from, "Can they "fix" her?" to "She will get better, right?!??" What those people don't understand with their "curiosity" is that this Mama is tired, worn out, sad and lonely most times because she knows how "different" this life is.

Our life is slower, we look longer at each object, we spend more time observing, and sometimes...MOST times...we don't see you there. "We" is referring to Lilah. She "needs" you to talk to her. As does her Mama who is feeling so helpless and alone in this journey right now.

Lilah was evaluated, again, for OT today through BCW(Babies Can't Wait. Early Intervention Program) At the end of the "test" Tara told me "the positives"... she went from a 54 to a 72, she's doing a lot more than she was, then came the HARD part..." Lilah measured at 14 months....and all over the board to about 20 months at the highest measure."

Here is where my heart sank. Here is where I am going to be honest. I WILL be transparent. I will tell the truth that SO many other people want so badly to say, but refuse to be "honest." Hearing how "delayed" your child is....SUCKS! It hurts so bad. My girl is about to be 29 months. Yes, read that again, 29 months. She was tested at 14 M.

Before the nasty comments start, understand that I LOVE my child...more than anything. She
has taught me more about myself, my love, my faith, my joy....

But yes, she IS different. I read about all of my "friends" who have children more than a year younger than Lilah and their child is doing this and that. I am genuinely happy for them, but my heart does, honestly, ache. Then I look at my older children who are SO amazing with Lilah. I know that they get tired of "therapies" and Lilah getting "sick" so easy. I want to do "normal" things with them all. But, that is not the life we were dealt. Our life...is different. I hate, actually despise, when people offer to "take " the older ones to do things without me or Lilah. Don't people understand that I, as their Mother, want to do those things "with" them. I want to be the one to see my children "experience" life. I want to go places without people stopping us and my kids having to hear those questions, "AGAIN."

Sometimes, I want to be "normal." .......................

Before you say some "cute" sentence or "phrase" to make me feel better. Understand that I need to wrap my head around this pain AND grieve it. If I just quickly jump into, "Oh, I will be fine" or as SO many call me "SuperWoman" mode...I am not allowed to be "real." I don't want ANYONE to feel sorry for me, for Lilah, for my children, etc. What I want is for you to allow me to "FEEL" my emotions and stop telling me "how" to feel. Too many times someone who has NO idea what I have been through decides to tell me "how" to feel. Lilah is not my first special needs child. She is the first one I have met. I lost a baby, almost 7 years ago. 7 years ago this Friday. She had Turner Syndrome. Both She and Lilah's "conditions" are "flukes." 2 out of 5 of my pregnancies cannot be "explained."

I never met our daughter. She passed away before she was born and my OB decided to do a DNC so I wouldn't spend the weekend in misery miscarrying. I have said for YEARS..that I would have loved her. EXACTLY as she was. She was taken from me before I was able to even experience her.

Years and many life altering moments later, Jesus gave me Lilah. After many incidents where I thought I had "paid my dues" or been through enough heartache...without any "preparation" I landed in Holland.

Some days I am angry with God. Yes, I wrote that and said that. I don't understand why I keep having these "tests" and "trials." I have heard and been told that it is to "grow" me. With all that I have been through in my life,my marriage, and my family...I should be VERY "grown."

I know to cling to Jesus...I always have and I always will. Right now, I am hurting. Right now I am asking the "why Lilah" question. Right now I am bawling my eyes out as I type this. I am opening myself up for the "world" to view. Knowing full well that someone will think I am a failure as a Mother. Knowing I will be judged. Knowing that someone will not "get" me. But, I am opening myself up, allowing my transparency and vulnerability to show through because I need to put it out there. Sometimes, on some days...THIS life in Holland is hard.

Now, to do what I need to do...be with my babies, cry, pray, and get my head in the Bible. Tomorrow is a new day. Tomorrow the rainbow will shine through where today's tears are flowing.