Comments

"God gives special children to special people"

"God doesn't give us more than we can handle"

"It could be worse"

These are some of the comments people make to me....ALL the time.

These comments make me want to....

I did not ask to be special. I am very, very aware that "it could be worse." I am SO tired of these statements. I know people say them because...they don't know what else to say and they feel the need to fill the quiet void with random canned phrases.

The people who make these statements do not have a child with special needs. These people live in Italy. They do not live in Holland; where I live.

I live in this world. I deal with this...every minute of every day. I do not need people to tell me how to be, act, think, or feel...especially if they do NOT have a child with special needs.

I, actually, had someone comment, "But its just her eyes." Are you kidding me? They have NO idea that my child is delayed because she cannot see the toy to roll over. Why do "normal" babies crawl? Because they want something. Lilah isn't crawling, scooting,etc. because she does not know what is there.

The comment "its just her eyes" is more hurtful than anyone could possibly know. These people are not with me when I lay Lilah down next to other babies and see how different she really is. The way she holds her head in fluorescent lighted rooms(because the light is SO bright it blinds her completely), the way she closes her eyes when she's in the shopping cart at Wal-Mart...and 6 people stop me to ask if she's sleeping. I want to say, "Yes folks, Mother of the year award goes to me for letting my child sit up, holding the cart, and she sleeps all at once. I know I sure do have a talented child." But instead I politely say, "No, she's not sleeping, she has a vision impairment." AND you'd think that would be good enough, but noooooo...THEN people's curiosity gets going, "But her head is down, she must be sleeping."(yes, I knew that they knew her better than I) I say, "No, her null point is very low in the periphery of her eye." and they say, "HUH?" and I say, "she can only see a very small amount out of the corner of her eye." and then the kicker comes in..."But that's good enough, right?" I would love to go into a store and not have to stop and answer so many questions. I am just not there yet. I am a VERY busy Mother of four. No, I do not sit home all day and eat ice cream and watch soaps. I am usually running in the store, with all four in tow, trying to get it all done in a matter of minutes. The last thing I need to do is tell people that Lilah has this delay and that delay.

"God grant me the strength to answer the questions of these people, because YOU know how hard this is on me."

This is what I pray as I am listening to their questions. I know, yes, I really do...that Lilah's testimony is one that is being shared around the country. (Thank you for those that continue to pray for her daily) I am so grateful for that. I know that so many people need to hear this story...AND I want them to. Sometimes, the telling...the actual verbalization... just gets to be too much.

The canned comments and responses are not comforting in anyway. Sorry, they just aren't!

What a Mommy needs, a Mommy like me...with a child who lives in Holland really needs, is someone to listen. Not a fixer, a talker, a manipulator,etc. We need support. The kind of support that comes from a great listening ear.

James 1:19 My dear brothers, take note of this: Everyone should be quick to listen, slow to speak

The people who have helped me the most are those who have been the ones to not say a word. They know that they are not in my shoes. They don't try to be. They just listen, be there, and allow me to feel what I am feeling. I must process this. Each day is a journey. Each day there is something new.

I am So glad that the counselor from our church told me that I am allowed to feel this way. THANK GOD he told me it was OK to mourn and grieve, ask questions, cry, vent, etc.

So, I guess my point in all of this was to teach those who don't know... that it is better to just be there for a parent of a special needs child. Words are not that comforting.

Love

My girls

love eachother VERY much!

I Love them...MORE than they will ever know.

When I look at Lilah....

I see love.

PURE.

Innocent.

Trusting.

PERFECT!

Sept.2, 2009 Anointing

I am human. I am not in control. The Lord has a plan. I must trust in God's plan for Lilah.

When I am weary, when I hit the bottom of the pit and can't see the light, I have learned to ask for prayer. God has given me the wisdom and discernment to call upon HIM when I am in need.


After Lilah's last visit I was in that pit. I made the wrong choice to let fear overtake me. I got so sad and so full of worry, that I thought I did not know what to do....BUT I did. I asked for prayer. I emailed Jim Bolen, the Community Care Pastor at my church, and asked him if he and the elders could pray over Aaron and I, and anoint Lilah again before she has the exam in Atlanta. He replied to my email right away. He had his assistant, Yvonne, set it all up.

When Aaron and I walked into the prayer room Wednesday night...my heart lept for joy. Jim was standing in the room with some of the elders from the church. But they weren't just any elders. There were some of the same group of men who had prayed and anointed Lilah in December. (Jim Bolen, Dennis Meeks, Rick Monroe, and Mickey Boutwell) Now, for those of you who do not know...Jim baptized Aaron when he accepted Christ almost 2 years ago, Dennis has been a great mentor to us through many of our hardships, and Rick has been a very close family friend since I was eight years old.

God was there. God was there in that room Wednesday night. He was present. He heard each and every prayer .....and he caught each one of my tears. The Lord has begun to lift my pain. He has begun to take my guilt, that is from the evil one, and replace it with HIS peace. I am relying more and more on my faith to get me through each moment of each day. I do not know what the Lord has planned for Lilah. I do not know what the Lord has planned for me. All I can do is be obedient and believe that the Lord will see us through and HE will keep us in the palm of HIS hand the entire way.



Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective. James 5: 13-16

Progress, not perfection

Each day I watch Lilah make small changes. No one else may notice....But I do!

Sitting stronger

Yesterday was her first time in a shopping cart where she held herself up with her "trunk" muscles for 40 minutes. She lost her balance twice, but that is a HUGE improvement for her.
She is becoming more comfortable with the world around her. At the park she sat on a blanket and happily played with her cup, toy, and glasses. The sun was blaring, but she did GREAT!

Snuggling in her Daddy's arms.

Lilah is very much a MOMMY'S GIRL....but as Daddy says, "She's still my little girl!"

Happy Anniversary, Aaron. (click HERE!)

Therapy, Therapy, Therapy

I have been patching Lilah's left eye, in order to strengthen the muscles of her right and prevent muscle surgery, as best I can. I have worked really hard at trying to get her to use the right eye. I was getting disheartened by some of the results I was seeing, so I decided to try the videos my friend, Jennifer F, is loaning me.

Lilah watching Praise Baby. (Similar to Baby Einstein, but with awesome worship music!)

All of the kids like the video

Take a close look at these two pictures

Do you see how GOOD this right eye looks?

It is clearing...does she have vision in it?

What kind?

She is such a happy baby....who is teething!

Lilah has goes back to see her new PT tomorrow. Our new regime:

• PT 2x/week
• VT 1x/week
• Patching 2 hrs/day...4, 30 minute sessions
• FML(steroid to clear cornea) drops... 1 drop in right eye 2x/day
• Trusopt (glaucoma prevention) drops 1 drop each eye 2x/day

By the way...I LOVE Lilah's new PT. She works her hard, but she sees potential in Lilah.

Praying for results for Lilah. She is working So hard!

The perspective I have been searching for

I have been tranparent with this blog. Very. I have opened my heart for all to see. There are days I will type and cry, and wonder...."Should I have written that?" But, I promised myself and God that I would use this blog as a way to express the true ups and downs I am going through. I promised the Lord I would shout HIS name at every turn. Yesterday I reeived an email from a friend and I have read it, re-read it, and then...I read it again. I wanted to share with you what she wrote to me. Not because I want to spread her info (Her name will remain anonymous). I am sharing this because I want you to know her perspective. BUT...let me tell you what I thought about her the first time I met her. The first time I laid eyes on her. In my mind I thought, "She is a beautiful woman. She is so happy. She is so friendly. Her smile is contagious. I need to be more like that." Please read. A....THANK YOU. YOU are a blessing.




Hey Honey! I have not seen you in soooo long!!! I read your blog and cried for an hour! LOL!!!! I want you to know I am praying for you guys along with many others, I see! I too was born with a birth defect in my eyes. I was born with whats called Morning Glory Syndrome. I had 8 surgeries on my eyes before the age of 3. Both of my eyes were crossed into my nose LOL.....They insisted that I was blind in my left eye and barely vision in my right eye. I was seen by many doctors from all over. My mother lived by faith in GOD!!! She also had 4 children as you do. I remember being prayed over by the whole church many of times and I believe the prayer its what changed my life.I am legally blind in my left eye, but do have some sight. My right eye is fine and that is how I see. As I was growing up I wore patches on my right eye to strengthen my left eye. I had people always looking at me too and making fun of me. But I want to tell you that yes it was difficult at the time but I know now that GOD made me this way for a reason!! I am who I am today because of what I have been through and what he gave me. I would not have any surgery today if they could fix my eyes. They are me!! They make me!!!Your little girl will be the same way. She will blossom and be the girl/woman that GOD intends for her to be. It might be a bumpier road than normal but that is what will make her so special. I PROMISE YOU THIS!!!!Remember that GOD knew her before she was even a thought in your mind. He had her life planned before you did. Do not blame yourself that you are bot doing enough or that this is a result of you and something you did. This little girl is HIS and he gave her to you for a reason!!!!!!! LOVE YOU!!!! A.



THANK YOU A!! You have NO idea that THIS was not just a letter from you, it was a letter from HIM. HE was speaking through you to get to me. Thank you for writing this letter to me.
A, you have given me more HOPE! There are not enough words to express....

Prayer

On Saturday night at church, I was invited to bring Lilah to the prayer meeting the following Monday. The prayer group has been praying for Lilah since her birth. I was told that they wanted to pray over Lilah and I. Last night...I went to the prayer group....Lilah in arms. They asked me what was the latest, and I poured out my soul. (see the last two previous posts) I told them about Lilah's visit with Backus yesterday, and how I felt so at fault for not treating her like the others. I have held her so close, so tight...almost like an egg that was going to be broken if I moved her too fast. I told them how I felt it was my fault that Lilah was going to have to work so hard to move. I also told them how I felt it was my fault about her eyes.

They placed a chair in the center of the room, laid their hands on me and Lilah....and then....Kathryn got the oil and placed anointing oil on me and Lilah. Each member of the group individually placed oil on me... and Lilah. They took turns praying what was on their heart for us. They prayed for Lilah to be healed fully. They prayed for me to have peace about the Lord's will. They prayed for Lilah's exam in four weeks to reveal vision. They prayed for Lilah to do great things for the glory of God. They prayed and prayed...and then...someone said it, "Father God, please remove the guilt this Mother feels. Please take away the fear....." THAT was it....the rain poured from my eyes. They were speaking my heart. They were asking what I was too afraid to ask for myself. They asked that the guilt that has no place be replaced by God's mercy, grace, and peace.

The prayers that were said last night were spot on! What an amazing group of prayer warriors!! I am so glad that I went. I am so glad I was smart enough to ask for what I needed. I am proud of myself for getting out of the door, and out of this funk, to make changes that will better me...and better Lilah. I need your help to keep praying. For me...for LILAH. The Lord will answer our prayers. I know it! The hard part is patience. This is all on God's time!

Mark 6:13They drove out many demons and anointed many sick people with oil and healed them.