This morning Lilah had her 2nd OT evaluation.
After the therapist played with her and watched her, she told me what level Lilah is on.
Lilah is at a 10-11 month level for Occupational Therapy.(pincer grasp, fine motor, etc)
Lilah is almost 14 months old.
Tara, the OT, said that this isn't "that far behind."
Which is reassuring...
BUT...
When your 13 month old is in the same room as another child younger than her, doing MORE than her...I will, as always, be honest...it stings. I get SO tired of the constant comparisons. OR people that say..."I thought it was JUST her eyes."
If ...IF you ONLY knew.
HOW hard.
HOW MUCH..
we work to meet each milestone.
It does NOT just "come."
But.
but.
BUT!
I LOVE Lilah. LILAH. I don't want another baby. I want Lilah. I don't want her to be anything more than what she is!
AND
THAT is good enough.
I don't want her to "see more, be more, think more, act more."
I want her to be all she can
BUT
I will NEVER change her.
Now...
I am going to go read the poem below
AGAIN
and cry
and KNOW that
no matter what anyone says or thinks...
She is my gift from the Lord and I love her!
8 comments:
Any behindness is hard to handle. We have more than "just his eyes" but people think it is just he was born little. they work so hard for every bit of "normal" Ty is 4 and is OT wise about 2.5. MAYBE 3 if we stretch it. He can't feed himself and so on and so on. BUt you konw.. at the end of the day they LOVE YOU!
Wow! She is doing great!!!! 10-11 month old level! phenomenal!
I would definitely say that's good news.
Lizzy is stuck somewhere back around 6 months (and in some areas further back than that)
But like you said, I don't want her to do anything more than live up to her potential. And if her potential is that of a 6 month old, than I'll be as happy as a clam :)
I hope you are having a wonderful new year!
We love Lilah too.
QMM
Katie, I think there IS a problem and it's a pretty big one. But as far as I can see the problem is you. You claim in one sentence to love your daughter and to want her just as she is and then you soak in your little pity pot if one thing comes back showing the slightest problem. Here is a big fat dose of reality for you. Get OVER yourself!
You are the kind of parent that people who work with special needs children can't stand. You choose to be offended by the slightest comment or question no matter how innocent. A doctor questions Lilah's hand several months ago, wondering if there may be an undiscovered problem. What do you do? You whine and cry about the nerve of her to hurt YOUR feelings.
I have a 23 year old son who is mentally retarded and autistic. I have never once cried and made ridiculous bids for sympathy the shameless way you do with your daughter. And do you want to know why? Becuase Shawn IS perfect just the way he is. I have never once used him to get attention and sympathy from other people. I love to talk about him and his funny little quirks because first of all, he is a large part of my life. I want people to see someone like Shawn as a valuable member of society. If anyone was ever to feel sorry for me I would tell them to not waste their time. When he was young I wanted answers and I made sure that his educaters as well as doctors knew that nothing they would tell me (or ask) me about him would ever offend me. How could I possibly be offended by someone being honest with me.
You Katie need counseling in a bad way. It is quite clear that your only real reason for this blog about your child is to get for yourself as much attention and sympathy as possible. You are exploiting her in the worst way as far as I can see. I don't know you, but I can't help but wonder what you did for attention before your daughter was born. You obviously have an intense need for large amounts of attention and pity. I have no illusions as to how you will react to this. You will cry. You will scream. Of course it goes without saying that you will erase this entire comment without even once considering the truth behind it. That is too bad. Believe it or not my intention is not to hurt you. My intention is to help you see how you are exploiting your child's problems to get attention and sympathy for yourself. If you truly want Lilah to grow up as normal and happy as possible you need to let her be the star of her own show and stop grabbing as much attention at her expense as you currently do.
Lilah is as normal as you allow her to be. If you love her as much as you say you do then stop throwing fits every time you are told something is wrong. The only person you hurt when you deny these problems is Lilah. If she has to grow up feeling that she does nothing but dissapoint you, then I fear for her self esteem. Instead of crying and begging for attention over every small problem that comes up, start celebrating her for the unique little person that she is. You can hate me, you can write all the nasty things about me you wish to. It makes no difference to me. My happiness and self worth aren't dependent on what others think of me. But if you have any maturity and love for your special child then turn this blog into a celebration of her life instead of the "lets check in and see what is making KATIE upset today". Learn to take joy in Lilah as she is. If you need more attention than you can get from your husband and children then try some volunteer work. It would do you good to see and interact with people who have real problems. Trust me they are out there.
But please stop using your child to gather up sympathy and attention from well meaning people. Save your over blown fears and frustrations for the Lord. He has infinite patience after all. And use this blog to do what you say you want. To celebrate little Lilah and her amazing little life.
I remember the sting of pain when the evaluations would be revealed on paper of Cayman's delays. Seems silly because nothing changed about her. It just suddenly felt like I was hit with reality and reminded of how uncertain the future is. But somewhere along the way, that sting comes less and less as you process this new kind of normal that is filled with doctor appointments, more medical terms than you ever wished to know, therapy, evaluations, on and on. But it's an amazing feeling, once all of that feels ordinary and not painful. Cayman is almost 22 months old now and in gross motor skills she's around a 6-8 months in development. But yesterday when she pushed herself up from a laying down position into a sitting one, the rush of emotions over it left us smiling, laughing, with tears of joy. And I looked at Mike and said, "I had no idea Cayman's diagnosis would make us so happy." At one time, the thought of her not being able to do that at nearly 2 years of age, pained my heart and felt like a life I did not want to know. But I realize now, I didn't know how good it was going to be. Without Cayman's diagnosis, our celebrations, I believe, would be fewer, maybe less exciting, because they were expected. But now, having gone through the emotions of having it all stripped away, any of it that we get back feels like a gift, a miracle from God.
That is how God can take our child's diagnosis, change our perspective, and heal the sting completely without needing to cure them. I am convinced, that without the gift of their diagnosis our life would not be as good as it is right now.
The riches stuff come out of our deepest hurts. So don't feel bad that you hurt and your heart wants more for Lilah. But ask God what that "more" is because He wants more for her too but it might just be different than what you have in mind.
Lots of love to you Katie!
Katie,
I can only imagine what would cause people to say such hurtful things. You just keep loving that beautiful baby and sharing your story. God didn't just give Lilah to you, He gave you to Lilah! Praying for you!
I do not know you, but I read the "nasty" post left by one blogger, and I must say it made me shudder. I am the mother of a typical child, a toddler just 20 months old. I have my days where I worry over him because he is compared to his peers for things like how much he is talking (which is not much), and it is perfectly normal to feel the way you are feeling. It is natural for a mother to have those feeling in their hearts, even though much of them go unsaid. You are entitled to that, and I can only assume that your blog is your release, a place where you can just share what you feel without anyone judging you (at least I wish). Nobody is making them read it! I encourage you to see the glass forever half full, and please do not let some blogger who does NOT even know you bring you down. It was a bit heartless if you ask me. Keep loving that baby girl, and don't stop pouring out your heart! May God bless you, and may you be confident in the fact that you are not a selfish person but a perfectly normal woman who is just being a mother.
Hey Suzansayz,
Ummmmm BITE IT...
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