I have, in a way, been holding back.
I began this blog as a way to express myself honestly, talk about Lilah's condition, vent, pray.
This blog is also a way for me to tell everyone how about Lilah, because SO many people love her and ask daily, "How's Lilah doing?"
I LOVE talking about Lilah's progress. I love sharing Gods goodness...in the best and worst circumstances. BUT....I didn't really think that many people, besides those close to us, were reading it. So, when people put their negative and hurtful two cents in...I began to question myself. I felt as if I didn't have a right to share my true feelings. I felt like I needed to look like it was perfect...INSTEAD of having the courage to persevere with my REAL emotions.
So...I will apologize ONLY to myself and God for not being totally honest the last few months.
I have been afraid. I have been afraid of what people thought. Why? Well...that is another story, for another blog.
This blog IS about Lilah...and me. This blog is about where this journey has taken us, where it will take us, and what we will do for God's glory.
So, here we go...
Last week at church...Bob Russell was the guest pastor and spoke about "How to pray."
After his sermon I realized that I have stopped "really" praying for Lilah's healing. Why?
WOW...the truth?
Being told to accept her as she is, trying to adapt to life as a Mom of a "special needs child", taking care of everyone, watching how hard Lilah works and realizing that she will always be different...and that is ok.
This journey is lonely. Really ...it is. This blog has been the ONLY way I have connected to other Mamas like me. Then...when my intentions were questioned...I was crushed. I AM a pleaser. I try to do what I can, the best I can...alone...never asking for help, then when I take the courage to seek help from other parents of special needs children...like a counselor requested....only to have my intentions questioned. Yep, it broke me. My children are my world. After God, and Aaron, yes...they are. I wonder each day if I am doing enough. I wonder if I am doing the "right" thing. If this is the right thing, the wrong thing, all the while trying to portray that things are "peachy."
No...not exactly...they aren't peachy...THIS is hard. This is beyond hard. Watching your child work, really work, and then seeing other children...those living in Italy, not in Holland like us...master those skills sooooooo easily...wow. It is hard. It is hard to see SO many people take for granted what they have. And to be honest, before Lilah...I probably took for granted....LIFE.
I KNOW Lilah has come a LONG way...SO fast. But....I also know we have a LONG way to go.
Lilah has a new PT/OT schedule. In order for our insurance to pay for the services...she has to have them on the same day. Well, Lilah doesn't have the endurance to do OT and PT back to back. So, I take her to one center in the morning, then drive across town, pick up one child from school, and go to the other center. Read this correctly please...I am not complaining. I am in awe of Lilah. She has done AMAZINGLY well.
I am in awe of her. Each day. Question my intent all you want. But...do it privately and please do not attack me for the world to read...but if you must...know that I will leave your comment for people to read. NOT for them to feel sorry for me. THAT is not what happens. I read those negative comments and I pray for those people. As hard as it is to pray for those who question your motives and don't really know you...I do it. In order for me to follow Christ...I must obey. In that obedience are things that are really hard to do. Praying for people who judge me...praying for people who question me...praying for people who criticise me...praying for people who have hurt me and hurt Lilah...praying for people who understand me...praying for people who don't know Christ...praying for those people that are unaware of the truth...praying for those people who say and do things that leave lasting impacts on peoples hearts....praying for people who do not want to, nor will they ever care to...really get to know Lilah. I pray for those people who are scared of her. Oh yes....we have had it. We actually over heard a Mother reply to her child who was curious about Lilah, "Shhh, come on....don't stare," and pushed her cart quickly passed us.
I cannot make people love, talk, understand or appreciate all Lilah has to offer if they aren't willing to give her a chance. I know that there must be something...fear...that makes them hold back from her. Then there are the people who ask questions, I give answers, and then ask "Why we didn't "fix" it?" I must be very candid for a moment. In my head I am thinking, "Did you really just ask me that? Do I ask you to "fix" your problem, issue, habit, etc?" No, no, no, no...I do not say that aloud...but I am amazed at how cruel people can be. If I tell you Lilah's story and tell you where she was, where she is, where she is going to be someday...please don't look at me with disgust.
At a birthday party recently a young girl began to question Lilah's eyes. She said, "Why are her eyes so crazy?" (yes she used the word "crazy.") I said, "Her eyes are not crazy, they are beautiful." The little girl proceeded, "No, they go like this." As she made an extreme cross-eyed look with her own eyes. I said, "That's how God made her. She doesn't see like you and I , but she's still beautiful." Well...that wasn't good enough. The little girl pressed on..and on...and on. For some reason this little girl was not satisfied that Lilah's eyes were different. That Lilah wasn't "normal." I politely answered and told her once again that, "Lilah doesn't look crazy. She looks beautiful." Little did I know that my friend, Lana, was listening intently to the entire conversation. Lana said, "You handled that with such grace." I smiled and said, "I try."
That is just it. I am trying. I am trying to manage it all, do it all, and be it all so that Lilah will have exactly what she needs. I am trying to reach out to other parents who have found themselves in this and don't know where to go. I don't want to pretend that each day is without hardship, because then I would be lying. I don't want to seem like I have it all together because I don't. I don't want to seem like I am a perfect Mother because I'm not. I make mistakes. BUT...I am doing the best I can.
I will be me. I will not be you. I manage this one way....you manage it another. I will not judge you for how you handle your special needs child...your normal child...your child. Please do not judge how I handle and parent mine. I will tell the truth about the day to day hurdles and joys. I will not shy away from the truth. I am not afraid of the pain. I will not run from it. And....I know I am not alone. I have met many women who have expressed their pain for their child. Many are glad to read that they are not alone. Many are glad to know that someone...somewhere...feels the way they do.
I will continue to pray for Lilah. I will ask for prayers. I will pray that she is healed....if it be the Lord's will. I will pray that the Lord will protect her from those who find it necessary to want to "compare" her. I will pray that Lilah will be strong. Much stronger than I am. I pray that she will find comfort in the Lord and his truth...never believing the lies and hurt of this world. I pray that Lilah will "Put on the Armor of God" everyday. Ephesians 6:11
6 comments:
Amen sister....well said.
Im so proud of you for standing up for your true feelings. You deserve to express your feelings however you feel you need to. Only parents of special needs children really understand how hard it is. You are an amazing person and Lilah is an amazing little girl. God bless you both.
I second that, very well said and well done.
I'm sure it took a lot of strength to break out and write so freely again. It is heartbreaking receiving people's strong criticism. Hopefully you'll be able to find the freedom and the
gentle encouragement from others as we all need each other to grow, not attack.
I connected to your experience of the little girl asking the questions about Lilah's eyes. Recently, there was a little girl
that was asking questions about Cayman and the parts of her that
look different. I had a couple thoughts that I wanted to share with you on my recent encounter with this type of delicate situation. And please know, I don't feel I know all the best ways on handling such things. We're all learning and each person
comes up with what they feel works for their individual family or individual situation.
Here's how I responded...
One of the things the little girl noticed about Cayman being different is her thumb and how it remains folded into her palm. The little girl said, "Cayman's thumb looks weird." My natural flesh felt upset and wanted to correct the little girl and teach her not to use the word weird. But I'm highly non-confrontational by personality though and instead simply said, "It does look a little different doesn't it? That's because she's missing a muscle that would keep her thumb out like yours and mine." The little girl responded, "she missing a muscle??" as she paused for a moment to think about it, and then said, "that's cool!" I giggled at her response and she smiled back. I thought her response was interesting and I pondered it for awhile. As the rest of the afternoon went on, it never seemed to be an issue again. And I never heard that little girl use the word weird again either. And later, the little girl wanted to sit next to Cayman on the couch and I saw her snuggling Cayman close and even lovingly stroking Cayman's thumb.
It made me wonder, If I would have turned my attention into correcting her use of the word "weird", that little girl would
have likely felt like she was getting into trouble which would have made her relate to Cayman's differences in a negative way. And maybe even furthering or sparking on fear of them. If they feel that way, it will make them avoid her rather than feel comfortable with her. But when I responded to her use of the word weird as recognizing her terminology to mean different, the little girl then freely stood
there understanding Cayman better without feeling reprimanded and she even thought it was "cool".
Plus, I like the idea of teaching Cayman that when children ask
questions, even if they are worded in a less than delicate way,
that she doesn't have to feel jumpy and defensive about it but
rather affirm what their intend is, which is (hopefully) getting to know her better. I think true confidence is never feeling the need to defend.
Bless your heart for being in such situations where your heart has to learn such erratic answers.
I have had folks question my motives even, for blogging. They are usually folks who say, "Oh I don't want to have anything to do with that old computer blah, blah, blah. Well I am limited in some physical ways and in a conversation with a spiritual confident she told me I am using the signs of the times to broaden my prayer ministry whereas I used to do it physically. Like you it is your way to share and educate. Do it your way dear mother and God will bless it.
QMM
Hi! I'm a friend of Donna Cartwright's and just found your blog because she is following it. I am also a chaplain's wife. Your blog is beautiful, your daughter is beautiful, and you are obviously a loving mother. Bless those who curse you! You are in my prayers! :)
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