Let me begin by saying this: I love Lilah. I do NOT want to change her. NEVER! I want her and no one else. Read that again please. I will never ask God to change the GIFT He has given us. I am MORE Grateful for Lilah than I could ever express. JUST the way she is!
I began this blog as a way to keep people updated on Lilah's condition and progress. I began this blog at a time when I did not understand what was going on and why.
Each time I type, I pray and ask God to lead me with HIS words. I ask God to show me HIS truth. I pray that this blog is honoring the Lord. I pray that my words are a source of HOPE, encouragement, and help. All at the same time I will tell the truth. Never lying about the day to day feats, struggles, and JOYS!
This blog is about Lilah. It is also about me...for I am the one writing. It is about our journey together. On this journey we will have amazingly great days. We will also have days that are not so great. If I wrote each day about how perfect things are...I would not be honoring God. I would be lying.
Remember Job. He loved the Lord SO much that Satan was angry. Satan asked the Lord if he could tempt Job. He told God that Job wouldn't love HIM anymore if things were tough. God knew Job's heart and strength and HE knew Job would never falter. The Lord agreed to let Satan tempt Job. Satan took away Job's money, home, stuff, family, power...everything...and Job never stopped loving the Lord with all of his heart. Job asked, questioned, and didn't understand....but he never stopped trusting and believing in the Lord and HIS promises.
I pray that I will continue to honor the Lord with everything I think, do, feel, act, say, AND type!
For those of you who read, follow, and love this blog for what is meant for...thank you.
For those of you who do not agree with me, think horribly of me, persecute me, etc. I pray for you. I pray for your peace.
I will not second guess myself. I will pray, read, and trust in the LORD.
Lilah is my GIFT from the Lord. She has taught me SO much. About life. About LOVE. About my faith. About how AWESOME God is. 13 months ago I would've never had the courage to do what I do today.
Saturday morning I told a woman of Lilah's story. I told of her miracle. I told of the Lord's goodness. I told this woman about the struggles and triumphs of the past year and how God has changed me and my family through Lilah. I invited the woman to meet me at church that very night. I prayed the Lord would open the doors and path to allow this woman to hear the word of God that night. To my joy...she came to church. She sat next to me. As Cam, our pastor, spoke this woman grabbed my hand and looked and me and thanked me for the invitation. She told me it was JUST what she needed. She later sent me a text and said, "thank you. this is going to change my life."
I did not tell that story to boast. I told that story because I know I am honoring the Lord by what I write here.
If I can help lead others to Christ by this blog...then I am honoring God. That is my goal. That is my number one priority. Next comes honoring my family...meaning the 6 people in my home.
For those who persecute me for what I have written, said, done, etc. I will pray for you.
I will always write honestly here. I pray you will read it with an open mind and heart. If you do not agree with what I have written, you have the right to click away from this page.
13 comments:
I love you Katie. I love your blog. Thank you for sharing Lilah with everyone. I am encouraged through your words and faith. God knew exactly who should be your beautiful daughter's parents. Thank you for having the courage to be honest and to share your daughter with the world. You are amazing. God bless you!
Katie you are a truth I can believe in because you carry out the truth that is Jesus Christ. Blessings
QMM
Katie, you are awesome and every time I read this I get strength from you. Iknew you were great 10 years ago and through your commitment to God I have seen you grow and change into even a more pleasant women. Keep on keepin on!! This is for you.
Hi Katie-
I have been following little Lilah's blog from a far, and while I do not know you family, I do identify with some of the struggles you speak of from raising my own little boy who has an undiagnosed syndrome and quite significant developmental delays. I can relate to how hard it can be to see other children, some younger than your own child, mastering skills with what seems like such ease. I also know how much joy comes from seeing your child make progress, no matter how small. I think that as parents of children who have some kind of challenge, we would all like to 'switch off' those feelings of sadness, but 'getting over' it is easier said than done. Your daughter is beautiful, and trust in yourself that you are doing the best that you can. Take care.
Apparently you are incapable of understanding anything other than what you want to hear. I stand behind every single thing I said. You have completely missed the point that labels are NOT harmful in any way. They are simply words that convey information. I have seen many developmentally disabled children with very low self esteem because mama refuses to accept an appropriate, label for their child's problem. As far as I've ever seen, you are the ONLY one who is doing the comparisons. You are the one who is so easily offended. I can guarantee that for now, at least, (since she is too young to be tainted by your perception of her) that Lilah herself is perfectly happy. A one year old certainly doesn't watch a nine month old,doing things she can't do herself yet, and feel bad about herself. No those inferior feelings have to be taught. And from your attitude I feel sorry for your daughter. She will learn these lessons soon enough with your "poor me" attitude. The thing that scares me is the fact that you are most likely "doing the best you can do". I find if funny that you choose to compare me to satan. Is that your way of refusing to consider anything I pointed out to you. To make me the evil one. I got a good laugh from that, are you sure you aren't a muslim, you know how much they love throwing around the "Satan" label. Well maybe some day you will grow up and realize that YOU are the problem and not your child. I can't help but wonder though. If Lilah brings you nothing but joy. If you accept everything about her without reservation. If you are willing to listen to others assesments of her without anger or fear or whining about how it's one more thing. If you are as comfortable with your special needs child as you claim to be, then what on earth, about your life, could be compared to the life of Job. It's funny that you demand to see yourself as a victim but at the same time claim that your daughter brings you only joy.
I feel sorry for you Katie. I will thank you however for giving me the idea for my next post. I can't wait to see what my friends think of your assesment of me.
Don't worry, you aren't that interesting to me. I will no longer darken your blog. Just remember, I have a good 22 years of experience with an incredible special needs child on you. Lucky for me I've never seen Shawn as a burden. I've never once even considered my life, with or without Shawn in any way comparable to Job's. I still beg you to consider counseling. You might be surprised at all of the things you do not yet know.
Well I'm off to write a new post. Go ahead and erase this as I'm sure you will.
Good bye.
I am a muslim with a child like Lilah but i do not label just anyone 'Satan'. And yes i have been reading this blog even though Katie is a devout Christian, I do not call her a satan. I admire her strength to reveal her feelings truthfully. For goodness sake, this is just a blog. Ridiculous, who is the 'satan' now?? If u have 22 years of experience in handling a special needs child share it with care and love not with hate.
I have to respond..
My special needs child is 4. I went to college to help children with special needs and while she MIGHT not see a nine month old and see she is behind it doesn't take away a mothers dream of what they thought it would be like. It is hard to see others doing things and them not be doing it.
I personally have mourned the loss of what I thought I would have while I was pregnant. Now that he is four and not as "Severe" As other kids and is mentally aware that he is different and no matter what we have to make accomadations for him in certain situations.
I don't know what special needs your child has, nor will I ever condone what you feel, this child is loved and Katie has a right to feel a certain way. Just like everyone has a right to grieve all their own, so does she. She lost the "ideal" child she always thought she would have.
yes it's true, my blogging ends in a few days! maybe two weeks at most. but don't worry, i'll still look at and comment on blogs from time to time...that is, after my one month self-imposed internet exile! and who knows, maybe i'll blog from time to time as well, but probably not regularly.
To SusanSayz:
I have been trying to bite my tongue, but after your last post, I must say something. Has your 22 year old special needs child ever gone through therapy of any kind? If so, doesn't that mean you aren't loving him as he is, but trying to make him something more? Why wouldn't you as a parent? I have 3 year old Identical Triplet Boys. I am extremely blessed to have healthy children. However, I am constantly teaching them, that is my job as a Mother. Every parent does special needs or not, we want our children to succeed. We want them to grow. We want them to learn. I get a little worried when my kids do something after other children and really proud when they do something before them. Does that make me a horrible monster? No, it makes me HUMAN and HONEST. All children are different as all parents are different. My Husband and I do volunteer work with other preemie parents. I would NEVER speak to them in the way that you have spoken to Katie. I have not seen one shred of compassion for another special needs parent in your comments to her. They have been just plain ugly. If you truly want to help another special needs parent, then help them. Be supportive, be loving, be kind. My heart is hurting for Katie. She is an AMAZING Mother and Woman. It's too bad that you are too high on your horse to see it.
Part I:
Precious Katie, I can imagine you felt wounded by Susan's words. Her approach was quite strong which is too bad because I'm afraid you will block her out now, when she
could have been such a great
teacher for you. She has 22 years
of experience; a Holland tour
guide expert and she can tell of
this place so joyfully. We have
much we could learn from her. A person with more stacked experience ahead of us in this
journey to make it smoother feels like a good thing. And I wish for that to not be destroyed for you.
I can’t fathom how I will manage it all in 22 years. But just like when I was pregnant with
Cayman, I didn't know how I would feel so much joy in the journey of a delayed toddler. But I have. So even though I cannot relate to being a parent of an adult special needs child, I know I will find the joy in that stage of life when I get there because I already have thus far and I will not give up. I know the joy in each stage will keep coming and it's already way easier than it use to be. I know it will happen for you too. Just like you are already experiencing some with Lilah. I don't think you are fully there yet in this stage of Lilah’s life and that's ok. I don't want you to feel beat up for that. You're still processing what God has given you through Lilah. We all process in different time frames. But I believe God has more in store for you, to bring you to a place where the sting of any delays will barely even feel like a pinch let alone bring you to tears. And that’s exciting because His teachings are so worth all of the work of keeping an open mind and heart, and all the Bible reading and prayers to stay close to His thoughts. I know you know that already because you have enough maturity and experience in your walk with God to know how good His ways are.
I would like to share with you the moment that healed my final little sting of pain in my heart over Cayman's delays. I do realize
healing comes in all different ways, shape, and form. So it might come in a different way or in small bits at a time for you. But I'm hoping by sharing my experience it will help sharpen your vision for what it can look like, since our emotional side is not tangible, and it seems to be the tangible is never as clear and
easy to see.
It was back this past spring. In April or May, I can't remember exactly when. Cayman was about
Lilah's age then. And just like you with Lilah, I always felt happy and glad to have my little girl in my life. But it always felt like something was missing too because I still hurt over her delays so much and at times I felt deprived because of them. I hated
that I felt that sting of pain like that. It was hard for me to process it because it conflicted with the joy I felt too. And the joy conflicted with the pain I felt. I wasn't making any sense to myself. I prayed and prayed. Journaled and journaled. And talked and talked a lot to my mom. If it wasn't for her and her strong, clear, wise, and patient words I would have sought out a counselor for their gift in being able to piece all the jumbled thoughts together. My mom provided that solid, tangible foundation for me to turn to. And one day, it all clicked. I can peg it to a distinct moment in time when my wounded heart felt healed. In picture form, it would have appeared like the Grinch in that Dr. Seuss Christmas story, when he pondered and pondered the Whos' joy and suddenly when the light bulb came on to his understanding of it,the x-ray screen revealed his tiny heart growing so large it popped beyond the edges of the screen. My joy grew to a whole new dimension that the stinging pain I felt was so consumed by joy it was barely detectable anymore.
Part II:
I don’t think the pain ever fully goes away. I think just like in the "Welcome to Holland" poem it says “And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.” And if I concentrate hard enough, I can see that there is still a little pain in me when I realize that Cayman “should” be walking and running. And I use the word “should” lightly because that’s another part of my perspective that was changed. The only thing Cayman SHOULD be doing, is exactly what she is. That’s the Lord’s will. He has a separate developmental chart for her and I can know that fully well because I prayed He would change her diagnosis, fix it, take it all away, but He didn't. So I now see, she was knit together in my womb exactly the way she was meant to be in God’s will. If you read back in my earlier blog posts of Cayman’s life though, you’ll see I was still processing too, exactly how God fit into the creation of Cayman’s body.
http://caymancindy.blogspot.com/2008/04/its-wonderful-life.html
"Did God really mean for Cayman to have brain damage? How can that be?" I use to think. I’m sure you can relate to that with Lilah. Did God really intend to knit her in your womb so that she would be born without sight? It seems crazy to us! But my mindset is pulled back to the realization that our ways are not His ways. He has an infinite amount of wisdom and I believe it’s attainable to understand that our life’s events are meant for our good without ever knowing the reason why.
So now I’m rambling. Anyways, back to the moment that brought me pure healing. It came to me when I read something Lisa wrote on her blog in regards to her pain she
experienced when she was pregnant with Elisabeth after finding out her diagnosis. Her words were something like this:
"I don't regret knowing that kind of pain because it has made all the joy I feel now, all the more
sweeter."
Wow, that blew me out of the waters that I felt like I was sinking in. I was dried off and given a whole new perspective that made all the difference in what I was missing. It was a shift in my mindset that I needed to work on and change within me.
Instead of looking at Cayman's
diagnosis and delays as something regretful and sad...my negative vision of it was turned into a
positive perspective, that it actually was a gift for making life even sweeter. I would have missed knowing the excitement of her advancements without knowing
the sting of pain from the doctor's expectations. So I began to praise God, for taking a time in my life filled with so many grieving tears to write an even better story, so that every part of me, all my 5 senses, can now be more alive to feel and live out my motherhood experience to its fullest because I am now more equipped to appreciate it better. What a gift that is and that all came because of that painful experience.
Keep up the faith, Katie and remain real and genuine. But also, make sure you never become stagnant in your work towards healing. Don't let satan fool you into thinking that you are completely there right now or you will miss out on this blessing and I want you to experience it at its best! God can and will bring you to a place where you don’t worry so much about Lilah’s development and instead see only the joy in the journey of her.
God bless you Katie! I think you are a gem and God looks at you as a faithful servant.
And God bless Susan too. Because she's also another faithful servant.
Wow, that might have just been a record in blog comment length!! Would you ever guess, that in person, I am actually quite shy? :)
It was pointed out, that in my super long comment, I misused a word.
In the statement:
"...and it seems to be the tangible is never as clear and
easy to see."
That should read the "intangible".
Oops. Sometimes writing isn't always a strength for me. And apparently, proof reading isn't either. :)
I hope you're having a blessed day.
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