"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."

~Romans 15:13

Friday, April 29, 2011

Mama Bear

Have you ever read or heard about how Mother Bears protect their young? The cubs are at such a risk for other prey to hurt them that the Mother is always on HIGH alert when she takes her cubs out of the lair. She will raise up on her back legs, growl, make a scene...anything to protect her babies. Mother Bears have been known to kill anything that comes too close and makes her uncomfortable in regards to her cubs.

I call myself Mama Bear. I have made such a fuss about my kids. I have gone to all lengths to protect them, and I have "made a scene" from time to time. Alright, let's be honest. When it comes to my children, WATCH OUT....this Mama Bear will NOT let you hurt them...and if you do...be prepared for a fight. And, I will NORMALLY win! I don't really care what others think about me when it involves my children. I know my own personal insecurities, but when my "cubs" are involved, this MAMA BEAR will stop at nothing to take care of it.

My cubs have been hurt, and this Mama Bear is roaring....

When school first started this year, my oldest, Alex, was isolated, made fun of, and talked down to because she wasn't "in" the clique. She didn't "like" the music they did, dress like they did with the fancy bows, shiny shoes, etc. We had long discussions about what "types" of people she needed to invest her time and energy: Those people who love her heart, not what she does and "wears." After a few months, she became friends with those who hurt her, but she still keeps them at a very safe distance, and only allows the ones that aren't "surface" friends to know her deepest desires.

My sweet boy, Eli, too, has had his little friends hurt his feelings and he has retold stories over and over and over again about how he doesn't understand why they won't "play nicer" with him.
But, nothing like what you are about to read.

Last year Sammie attended the Pre-K program at the YMCA, here locally. It is a state funded, lottery awarded program. My sweet girl, who is flamboyant, fun, out going, happy, and too smart for her own good, started crying daily. We found out that the teachers were mean and rude to her, never gave her the same attention that the other children got. Sammie was "isolated" from the same love and attention that the other children received. One day a little boy touched her inappropriately. She came home crying, told me what happened, and I became enraged. I hid my anger long enough to ask questions of how, what, when, where, etc. Sammie retold the same story, line by line to Alex and I heard it through the baby monitor. It was obvious she was NOT lying. I learned that the teachers told her that she "made it up" and not to worry about it. I was told that if Sammie hadn't been flirting with him that he wouldn't have done it. Seriously, at 4? They really thought she was flirting with him at 4 years old! I called the state, had them investigated and quickly removed her from them because of this and the fact that the teachers continued to "isolate" Sammie as if she was the "predator." She was only at the Y for one month. She then went to the same school that Alex had for pre-K and they helped love her back to her normal self.

Well, my girl has been bullied again.

Sammie has been sad about some of the kids in the class. The way they "talk" to her, ignore her, and call her names. We have discussed, at length, how to love people who talk bad about you, even when it is hard. We have discussed what "types" of friends she should spend her most quality time with. There is one girl in her class that keeps telling her, "I won't be your friend unless you give me a gift." And this is a daily event. Two children in her class are always "kissing" on the playground. Seriously, at 5 &6? What is going on here? Then the past few weeks to a month Sammie has been telling us how she's such a "naughty girl", not pretty enough, and no one likes her. Last week she started telling me that she "hates herself." WHAT? I have been prying, and pushing, and digging to get down to the bottom of this. Last night she told me about several boys that have been making fun of her and calling her names. The same boys that seem to cause trouble and the parents do not step up and interact. So, Mama Bear went to the school this morning, ALL of my cubs in tow, and had a nice long discussion with the principal, assistant principal and Sammie and I talked with the counselor. This Mama Bear will not have this continue.

Now, for the constant, daily, pain. Lilah is stared at, kids point, parents rush by us in the grocery store like we have the plague. I hear their children ask questions about her eyes, her patch, her braces, how she looks, and the parents"hush" them and keep walking. I do my best to say, "Lilah is visually impaired. She cannot see like you and I do, but she is still a gift from God." I reassure the parents, who are obviously uncomfortable that their child asked the question, that Lilah wants and needs people to talk to her and that it is better to ask questions than stare, point, and make fun of her.

Recently, the dreaded "R" word has been said in my presence about my girl. "is she retarded?" My skin begins to boil. The kids in the girls school who point, whisper, and stare, and I hear the "retard" word again.

Tthe R word MUST go!! Its like this: do you think that the "n" word is funny? Really? Do you?Its not. No matter the context, it is NOT funny. It is a derogatory word used to put others down and hurt them. It makes me sad to hear two African American young men calling each other that name. Its not funny. Just like the "r" word should NEVER be used in a joke or to make fun of something or someone. Even if you are referring to yourself in the "Man, am I that retarded?!" See, no matter the context, it is used to hurt someone or put them down. Have you ever seen 2 children with special needs joking with each other saying, "hey retard. Yo, retard, what's up?" No, you haven't because it isn't funny. So, why would a man or women of color use a word that brings about such pain???? Beats me!

This "r" word needs to be removed from the vocabulary in our homes, work, cars, and schools. Our children need to be educated about how to speak to people. Parents, stop what you are doing and spend some time with your children. Help them understand that what they say can cause very painful things to happen.

A 14 year old girl in our community took her own life. No one really knows exactly why. But, she was BEAUTIFUL. She seemed to have it "all together." What was said to her, and when at what age, that made her think she wasn't good enough to be in this world? What happened to her that drove her to do something that has now impacted her older sister, who found her, and her mother...forever? What is going on in our culture that our children are hurting each other and themselves? What are we,as parents, missing that we are allowing them to get "hurt" like this? How can we as parents, friends, uncles, aunts, teachers, whomever be MORE involved in the next generations lives to help them LOVE each other AND themselves?

I have decided to take my hurt, anger, frustration, and pain and turn it into action. Will you partner with this MAMA BEAR and help me change the course of our childrens future? Will you do your VERY best to remove certain words and phrases from your vocabulary? Will you stand up for Lilah and ask your friends and family members not to use the "R" word, no matter the context? I have tried, but each time I ask I am told I am "too sensitive." Well, be that as it may...this sensitive, loving, giving, kind, compassionate, passionate, protective MAMA BEAR will do anything I can to put an end to bullying on all levels!

Thursday, April 28, 2011

A place

While the kids were on Spring Break, Lilah had her OT evaluation and it was hard on me. I won't lie....it was hard to hear "how" delayed she is.

Aaron had already scheduled to have Wednesday through Friday off during their Spring Break, but he knew we needed a getaway with the kids to be far from the "normalcy" of life in Holland. He made a few phone calls and found a VERY nice house ON the beach in St. Augustine, FL. As God orchestrated it, it was the "only" house available and because it didn't rent during the "weekday" portion of Spring Break we got a phenomenal deal on it. Aaron kept telling me that it would be OK, we needed to get away from all of the day to day with the kids and sit on the beach with them and just be.

I am the worrier. (Did you already figure that out?) I worry that we cannot afford it, we will need the money when another storm hits, because in life, they happen, and to us...they happen often.
But he said, "you love the beach, and what better way to really love it then to stay at a house right on the beach?" After much convincing, and him just saying, "I'm doing it" we went.

I felt closer to God in those few days than I have in a long time. I see God at the beach. Its almost as if I can touch His face and feel Him holding me. I got up before everyone each morning and ran over 4 miles each morning at sunrise, with my praise and worship music. One morning I asked the Lord to tell me how He felt about me before I started my run. I asked Him to show me His face. That particular morning the breeze was perfect, the sunrise was FULL of color, I ran by a man playing catch with his 3-legged lab in the surf, and three teenaged boys whistled at me twice. To me, God showed up and out...in just a way that I needed. To hear the whistles, it was like God was saying, "yep, you are beautiful" (which I NEVER believe ) and to see the sunrise, He was showing me His beauty that He created for me. But what moved me to tears more than anything was the man playing with his disabled dog. That dog...happily played, tail wagging, in the surf, and he didn't have a care in the world. That dog didn't know he was "different", he just knew he was happy. I ran up to the man and told him about Lilah and how watching him with his dog was one of the most beautiful things I had ever seen. I ran past them on my 2 miles in, then past them again on my 2 miles out. It was just breathtaking. Both times. Tears filled my eyes...and I could hardly see, but I kept on. I wanted to run forever that morning. Running is my therapy and my time with God. Never thought I would say that, but I need it and it was perfect to run and see what I did.

Lilah had MORE fun at the beach this time than I have EVER seen before.

No one was on the beach. I mean...no one. It was like an empty, private beach, just for us. She played more, interacted, and crawled all over the sand and in the water.

I saw more from her in those three days than I have ...ever.

She loved the beach chair. Little stinker would climb up in the chair and turn around and sit down and just giggle and laugh and sing. She was so proud of herself. She knew she had accomplished some mighty things and she was just, plain......happy!

The sunrise and sunset at the beach was just....breathtaking. I had to share a picture of the sunset from the front of the house.

OK, so back to Lilah....

Watching her on the beach I saw her roll around in the sand and really enjoy the textures and sounds without hearing TONS of people.

When she crawled, she would just GO. No person or thing to "bump" into. It was freedom. Look at that form...
She was happy. Really. Really. Really........HAPPY!

This picture was not edited....just look...No one for miles. No one to stop on the beach and STARE at her. No questions about her face, her eyes, her feet, why she doesn't walk....it was peaceful and it was FREEDOM!

Even Aaron, a VERY non-beach person, LOVED it. He loved watching his family happy. He loved each moment...

The kids were happy. We were happy. Lilah was happy. She could tell we were relaxed and we were at peace. To play with my kids without worry, stress, or having to stop and answer questions or run into someone we knew. Of course, she was her normal snugly self and I got LOTS of Lilah love....and I loved that!

And then we had to leave.... : (

No one wanted to go. We wanted to stay...forever.

I know why. Life in Holland can be VERY hard. VERY. We came home to Easter services to serve and worship at church. As beautiful as it was, once again, when our family picture was taken, we were reminded of how "different" our family is. Lilah doesn't look at the camera. She takes WORK to look. Most people don't have the patience for her. Hence the reason our only family picture is where I set the tri-pod up and tickled her and the older three had to hold their smiles....many shots...and finally 6 faces. I am not picky...just want 6 faces. Smiles would be great, but what I want on my wall is a gorgeous BIG picture where you see 6 faces where I didn't have to get up 2500 times to adjust the camera to get one shot.

Our life is different. We came home to responsibilities, insurance papers, medicaid, SSI, therapies, AFOs, patches, stares from strangers...

It can be a very lonely life.

Its hard because I have 3/4 of me in Italy, and the other 1/4 in Holland. But most days I feel like it is reverse....3/4 in Holland and 1/4 in Italy. Holland can be very consuming.

Today was Lilah's first day of back to back PT, OT, and ST at Backus. And she did great. She really did. But, near the end during her co-treat with Sarah(OT) and Dana(ST), I felt that sting begin to happen. They were trying to get Lilah to vocalize something, anything, all while swinging her on a swing, playing with toys...a dual session. What hit me, like a TON of bricks, was that this IS work for her. HARD work. I mean, like when I ran the half marathon(13.1 miles) and my legs ached at mile 11 and I wanted to give up, but I didn't...work. THIS is how HARD she works....EVERY week. EVERY day. Life is NOT easy for her. She FIGHTS. I am so proud of her. I just cannot believe how much she works, how hard. Then, I see my "friends" who have "normal" toddlers. And they just "do" things. No work, no effort, no fussing, no crying, no moaning out of pain and fear...they just "do" it.

This week it was my turn to "serve" in Moppets(the area where our children stay in MOPS). The volunteer hadn't showed up in Lilah's room, so she was with me...and I was in the room with 7 other 2 year olds....who were talking, dancing, running, laughing, giggling, throwing balls, asking me to read books, etc. I was happily serving for the Lord and for those women that needed time away from their children, BUT...it was hard. HARD to be around children the same age as Lilah doing SO much more. HARD to hold her on one hip and dance and play with them while she doesn't "get" it.

I am NOT complaining about my life. I am not complaining about Lilah. I am surrounded by the "differences" and it makes me want to scream. Doesn't anyone see that THIS is difficult? Doesn't God know I am hurting? Why does He keep using me, and her? Why can't she be normal and He use someone else? Why do we have to be the ones to "lead" others? Why does He think I am so strong? I am not!! I am weak. I am in pain. I hate to see my child isolated like she is. I hate to be ignored by other Moms because they just don't know what to say to me. I hate to feel THIS way!

Why do I feel this way? Is there something wrong with me?

I want to go back to that beach, that house, and be away from the pain...I just want to love my husband and my kids and not have to face how the world views my girl. I know God is listening to me. I know He hears me. I know He understands. I know He wants me to keep doing what I am doing....and I will, but right now...at this very second...my brain is mush and I overwhelmed.

Tuesday, April 19, 2011

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.

Monday, April 18, 2011

I got a message the other day...

From Lilah's OT, Sarah, at Backus. The message said, "Hi Katie, I meant to tell you when you called that a spot has opened for one of our Speech Therapists to co-treat with me at the 11 o'clock hour. If you would like this her name is Dana. Just call me back and let me know. We have a LOT of people waiting on Speech."
I immediately called back and left her a message saying, "YES!"
Hold on before you think this is a boring post...it gets better, MUCH better... I knew EXACTLY who Sarah was talking about. Not only do I know Dana from Backus. I know Dana from SCC. I take care of her child on Saturday nights at church. I was excited that it would be someone I know, someone who believes in Jesus, HIS teachings, and has a passion and a heart for children like Lilah. THEN.... God showed me this: God has plans for Lilah to reach one of her therapists. Sarah is not a believer. Sarah is a wonderful woman, great OT, and gets very emotional when we talk about Lilah and what we have been through. I know that God has opened her heart, but she needs seeds planted. Dana has been working with Sarah for a while. Lilah has been with Sarah for a while. God is using Lilah to reach Sarah. God orchestrated an opening in Dana's schedule for her to co-treat with Sarah on Lilah for a very big purpose. I believe that the Lord wants to reach Sarah and her family. I believe that Lilah and I are being used right now. I believe that God has placed me, Lilah, and now Dana together in the same hour with Sarah so we can shine HIS light to her. I am not sure how. I am not sure what is about to happen, but I feel very strongly that, as Gene Appleton would say, "One more for Jesus" may happen. It may not be by us. It may not be from us, but we are part of HIS master plan to reach Sarah. Some days I get down and wonder, "God, why Lilah? Why does she have to fight this battle? Can you take this pain and hardship from her?" Then He gently reminds me that He is using her while He heals her. It is not my time. It is God's time. I believe that Lilah WILL lead a very long life. I believe she will do many things. MORE than I could ever dream of for her. But, He has a plan for her and He wants to reach many through her. So, we are obedient. We do as He asks. We do what we are called to do...and wait for HIS promises.
"Lord, I'm amazed by YOU!"

Sunday, April 17, 2011

Climbing up to ring the bells...and the giggles...priceless

Watch this video of Lilah, and listen to her babbles, giggles, and watch her movement... God is so, very good.

Wednesday, April 13, 2011

Results from Genetics Test

After MONTHS of testing. Blood draws for Lilah, Aaron, and myself. We have found MORE information. I guess.... Lilah has a deletion on one of her Chromosomes: She has ALL 46 chromosomes. (46,XX) She is a "normal female Karyotype." But, she is missing a little piece on one.... Here is her exact diagnosis: 14.42 MB Deletion at 8Q21.11->Q21.3 Interpretation aar 8Q21.11Q21.3(76,412,051-90,826,943)x1 Aaron and I had our blood tested too to see if we "gave her this" because there can be a familial variant. Meaning we could gave "given" it to her, passed it, etc. BUT, the results came back and we did NOT give it to her. Nor do we carry these genes. To date NO ONE. I mean not the geneticist, pediatricians, google, my research nothing and NO one can tell me what her "deletion" means. I have racked my brain and gotten madder, more frustrated, angry, upset, and my "fire breathing dragon" has come spilling out. No answers as to what or why this "happened." Also, no information on what her deletion means.
Lilah is just simply......LILAH!
Some of the research I did on chromosome 8 deletions mentioned higher risks of cancer, leukemia, and many other forms of life threatening diseases. For THAT reason alone, I want to know.... If, and I mean IF, her deletion means that she will only live to only 4, will face a death so painful, etc....I want to know. I would NEED to know.

If all that Drs, therapists, professionals alike will tell me is that she is "different", "delayed", "slow", "globally delayed", will work harder than others, will face more adversity, etc....I don't want to hear it! Not because I am ashamed, frightened, dumb, etc. Nope, that is NOT it. I don't want to hear she can't because THEY aren't God and I KNOW what HE CAN do. I know what He has already done!!

Lilah is perfect in HIS image. Perfect in HIS sight. Perfect because HE placed her in my womb.

If someone reading this wants to help me find out EXACTLY what this deletion is and it will HELP her....I would be utterly grateful. IF, it will help prepare me for her future, help me to teach her better, help understand her, empower her...PLEASE tell me what it means.

But, if I hear one more time that there has "GOT" to be a reason she is delayed or something else negative about my child, I may scream and you may see more than JUST my fire breathing dragon. So, please do me the kindness of keeping your negative opinions to yourself. Thank you.

Can you tell I have come to a great place of LOVE and acceptance of my girl? Yes, I have and THAT is all she needs! She needs me to LOVE her as she is...and I do. With ALL of my heart!!Thank you to those that LOVE her, pray for her, and those that LOVE this crazy Mama. We appreciate you!

Tuesday, April 12, 2011

A NASTY Eye infection

Last week I noticed Lilah's eyes had a yellowish discharge coming out of them. My first thought was pink eye so I started the drops I have here at home that she was prescribed last year when she was in the hospital with pneumonia. Then it wasn't going away, so I wondered if she was having excessive drainage due to the adenectomy and second set of tubes. THEN.... She woke up Sunday Morning with her eye swollen shut! "NO!!!!" I thought. "PLEASE, God, NO!" went rushing through my brain. I had taken the kids to the beach Saturday and I thought well, maybe she got sand in her eye, maybe sunblock...anything. So I started warm compresses. Her poor eye just got worse. Here is a picture from my phone from Sunday afternoon at 1. I called the pediatrician and the nurse on call said that it sounded like an allergic reaction, not pink eye, let her rest, then tonight give her some of the Atarax I had and let her rest it off. Then, she woke up from a 30 minute nap(VERY unlike Lilah) and her eye looked like this:(again, a picture from my phone)
I rushed her to the Urgent One here. The Dr said it looked like Optical Cellulitis. She wanted me to take Lilah to the ER for IV meds, but then decided to give her 2 shots of Rocephin. She said to see my Pediatrician ASAP in the morning. Monday morning came and Lilah's eye was swollen completely shut, BUT she was happy...
So, I hurried to get the kids dressed and off I went to the pediatrician with fear RISING inside me. I had already been praying and praying and praying and BEGGING others on Facebook to pray. I was scared to death. Scared she was going to lose what vision she had in that eye, that I would be sent to Dr.D, the devil himself, scared I would have to make a hard decision by myself that would affect the rest of her life, I was just flat out FREAKING OUT!!!

BUT, praise Jesus....I have a WONDERFUL pediatrician who said I did all the right things and wasted no time and he gave me drops, an antibiotic, and lots of peace. Lilah has cellulitis(of the skin around her eye) and pink eye...and allergies. Then I saw, on Facebook, that Dr. Lee(Lilah's AMAZING Corneal Specialist in Atlanta) was concerned for her and posted what I might need to do and to let him know if I needed him. I immediately began to cry GRATEFUL that I have such WONDERFUL Doctors who care for my girl, even from a few hundred miles away.

Many of you have asked how she is today. Well, her swelling is almost all gone, but her eye is VERY bruised....VERY. Here is a little video from earlier today.

Thank you for all of the prayers, love, and support. Don't you just LOVE her?!! I sure do!!!

Friday, April 8, 2011

John 9: 1-3

I feel SO led to share something that happened yesterday. After I published the last post, I got an email from a friend. I want to keep her identity secret because who she is isn't as important as what she wrote. Some of you will know who this person is just by the circumstances, but MOST of you will not. What moved me to write today was thinking of her words, and how we are all affected by the LIES Satan tells us.
( For this she will be "V" and her son "M")

V wrote me and said that she has been meaning to tell me something for SUCH a long time. She and I met through one of my family members. We became instant friends. How funny that God orchestrated that we would be in labor at the VERY same time. Our OB sent us both to the hospital, on the same day, to be induced. Little did we know, until the next morning, that our rooms were NEXT door! So, me, being me!!...I took my IV and walked my happy hiney next door and said hello. I knew her circumstances and that she was pretty much alone in that room. I wanted to go next door and say hi and give a little love. I couldn't imagine being almost alone about to deliver. So we chatted and she laughed at me for walking next door with my gown on and IV in hand. Then I went back to my room and hours later delivered Lilah. What she wrote me was this, "I have felt such guilt since Lilah was born. Like why her. Why not me. I was the sinner. Why did she have a baby that was different and I got the normal one." Those words broke my heart!! Not for me, but for her! She actually convinced herself that she should have had the disabled child because of her past and I should have had the "normal" child. This is what I replied, "V, you were given M to save you, just like I was given Lilah to save me. They are EXACTLY where they should be!" I am writing this because I KNOW she needs to hear these words from me.As do many of you who believe your current situation is a direct result of something you did in your past. She needs to see that her son is her gift and Lilah is mine. I re-read John 9 this morning. John 9: 1-3 " As He went along, He saw a man blind from birth. His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he was born blind?" And Jesus said, "Neither this man, nor his parents, sinned, but this happened so that the works of God might be displayed in him." Now, go back and read it again... Lilah was placed where God knew her light would be seen for all. Not that her light wouldn't have been seen in V's home, but V needed M so she could see HIM. I needed Lilah so I could grow closer and allow others to see HIM. I want V to know that she should never again believe that lie Satan told her. M is her son. M is perfect and so is Lilah. God made them exactly how they should be and He gave them to the parents they should have. V, Go to the mirror and tell Satan to flee. You tell him he has NO place in your life and that M is YOURS and he was meant for you. You tell Satan that Jesus' blood has healed you of all your past and that your gift was M. Now, ask Jesus to fill you with HIS peace and comfort knowing you are the right Mama for the right child and YOU are doing a GREAT job! Love you and am SO glad we were introduced and shared labor together!! Much LOVE, Katie

Thursday, April 7, 2011

I have been blessed....

I have made a LOT of changes for Lilah and they are paying off: First, I changed her PT ,and that has showed great promise. Second, I changed her Speech Therapist, and that has showed great promise too. Third thing I have incorporated for Lilah is Chiropractic care. What changes have occurred!!! Lilah is babbling more, exploring, and she is climbing up and INTO things. Check out this first picture I took with my phone: Not only did she destroy my bathroom cabinet, but she got "in" to do it! I call her Hurricane Lilah because she can destroy a cabinet in less than two minutes and by the time I go to the first one she is destroying another. For those that are worried, and yes, I know you are out there, I "DO" have safety latches, use them all the time, but allow certain cabinets to remain open for Lilah to play and explore. I do not mind the extra clean-up. To see her brain growing and changing brings me such joy! Today at PT and OT Lilah made GREAT strides: Here are a few more images from my phone: First, She climbed up the stairs, on her feet, and held the rails to push herself with her quads and hamstrings. Next, we put her on the bike that has Velcro on the feet, and she rode around Backus a few times. She LOVED it! I will be putting the bike attachment together that my sister, Allison, gave to Eli a few years ago and attaching some Velcro so we can do this at home.
Her O&M specialist came today to help give some input on the new walker we will be ordering for Lilah. She brought her 22 yr old student with her and THAT was awesome for me, and for Lilah. He walks with his cane, and explained to me how his vision is worsening, but he is learning with Yinka's help. He also told me that he wants to teach children, like he and Lilah, so he can help them use their devices and not be scared of them when kids make fun. SUCH a GOD moment!!!

During OT, Lilah was on the swing and stopped and signed "all done" without any prompting. TEARS welled in my eyes!!! She KNEW what she wanted to do, she communicated it, and then proceeded to get off of the swing.

And finally Lilah played with cymbals for a VERY long time today. She actually used them and went along with the beat of the music being played on the CD player. She banged those cymbals as if she was playing in a great band. Lilah LOVES music. She dances and hums, and I am trying VERY hard to get her to open her mouth and vocalizes the vowels coming out(watch videos below.)

Today was a day that ONLY God could have orchestrated. There is NO other explanation for ALL of these amazing events occurring in the same day, at the same time. Our God is awesome!!

I have a VERY heavy heart today for fellow Savannah Christian Church members, whom I do not know personally, but as a church family it doesn't matter...we are in this life together. If you hurt, I hurt. Learning last night about all the loss.: 2 fathers killed, 1 baby died, and 1 teenage girl who made a poor decision and lost her life....I am devastated for these families. My heart aches for them. I have spent the good majority of my day today praying for their peace and comfort. I cannot even begin to imagine the pain they are experiencing right now. I ask that you all stop, right now, and lift them up. Please ask Jesus to comfort them during this time of extreme grief.

Thank you.

I also have been thinking a lot about how FAST life goes. How much of a blessing it is to experience this life. We must all stop and see the beauty in each day. I am so grateful for my family. I am so grateful to be a Mother. To all of my children! I am so amazed that I was blessed to carry these beings in my womb. I am even blessed by the baby we lost. I think of her often. My children asked me a few months ago if I ever named her, and I said, "No, I think because it all happened so fast, and so suddenly, that I never did that." So, they chose the name for her, and they named her "Angel." (We never met our daughter. I was 11 weeks 2 days pregnant when I learned the Thursday before Easter in 2004 that she passed away. I had a DNC on Good Friday) Sammie tells people all the time, "There are 5 children, not four." She makes sure to include her. (LOVE that!)

I think about how blessed I am that each one of my children has taught me something SO unique about this life. I cannot begin to thank Jesus enough for allowing me to be their Mother. I am beyond grateful for each day I am allowed to hold them, Mother them, teach them, laugh with them, and LOVE them.

Thank you, Jesus, for my children who allow me to see your face each day.

I am very, very blessed.

Friday, April 1, 2011