Friday, February 25, 2011
SURPRISE!! We're going to...
So, off we go....
The kids are running the kids races tomorrow. Even Lilah. She will be walking with her walker in the 100m run. Think about that....
How inspiring will it be for her to know she did that? But even better than that...
for all the Mamas watching her cross that line to know that if Lilah can do it, then yes...they too can run 13.1 miles...and so can I.
Princesss Half Marathon...Team HOPE... Three of my friends and I will have on black tanks with HOPE monogrammed in HOT PINK on the front, tiaras, and tutus. I run for Lilah. I run because she is NOT alone in this fight. I am with her. 10 months ago I wasn't a runner. Today, I am. What an accomplishment for the two of us...for all of us. So, here we go...Disney...RIGHT NOW!
Wednesday, February 23, 2011
Sunday, February 20, 2011
Friday, February 18, 2011
"I don't know how you do it."
I hear that phrase often. I am not sure why, but in my two short years as a Mom to a Special Needs child, I have had a LOT happen to me. The last two years have come with more lessons than I was prepared for.
At the beginning of Lilah's diagnosis, friends and family came out of everywhere trying to "help, pray, support, love." Most had never been near someone with a special needs child. Most didn't know what to say. Most tried as hard as they could to help, but no one really got it. As Lilah has grown, the number of calls, emails, visitors, etc have slowed down to an almost screeching halt. At times this journey has actually cost me friends. People I really thought cared about me. People I thought loved me, wanted me around, and would stick by me through anything. Some couldn't handle that the "new Katie" didn't sit back and get hurt, she was fighting for herself, and her daughter, and stopped allowing people to walk all over me. Some people got tired of "Lilah's story" and needed more "normal" friends with less "drama." a friend of mine who's husband is in the military and deployed often said, "it's kind of like people during a deployment. Many come out at the beginning to offer food, prayers, and babysitting, but as the months turn into over a year, people stop helping. They have had enough. They forget that your pain never went away. You are still in the predicament, even if they walk away to ignore it." (this is not a sad post, keep reading)
The people that stopped being my friends, walked away, didn't know what to say, couldn't handle "it" or me(the loud-mouthed Mama) had to be removed from my life. It sucked. It hurt. I mean it rocked me to the core where I cried day and night, BUT....I was relying on them to fill a void in me that ONLY Christ can fill.
I had to be completely broken, left alone in the bottom of the pit to see that I needed to rely on God for it all, for ONLY He is the constant. People are imperfect, messed up, say and do the wrong things, but only God can heal wounds or holes in our hearts.
God took people from me that I couldn't let go of. He took painful relationships from me because I allowed these "friends" to hurt me and I never said and did anything. I was the doormat. I allowed them to treat me like I had no worth. Having Lilah, having to work and push and fight for Lilah, allowed me to see more than just my worth, it allowed me to know my importance to God and my family. I am not bitter or angry with these people. I pray for them daily. I know that they need a deeper relationship with Christ so they can love others fully, so they can see people through His eyes.
During this time, I also began to try things I never would have before. I began running. I ran my first 5K last April. I ran my first 10K in November. I have been training, since June, for a Half Marathon. On Sunday, Feb. 27th I will be running the Disney Princess Half Marathon. I have had people ask me , "Why are you running?" or in a laughing tone, "You're still doing that?" YES!!!
I don't just run for me, for release of stress, time to pray,better health....I run for Lilah. Go back and watch my testimony from a few posts back. Look closely at the time when she cries and you can see those tears flowing down her cheek from fear and pain. I run because being a Mom of a Special Needs child requires me to get out of the bleachers, stop being a spectator, and fight. When I run and my legs are heavy, I see Lilah's face. I see how hard she works. I know that if my girl can fight to learn to walk, talk, and do "normal" skills...then I can get out and run and push harder each time. I run for my girl. I run because she motivates me to try harder, do something I have never done before. I cannot ask her and coach her to push and work hard if I don't require it of myself.
The Lord has taught me so much through Lilah. He has given me strength to do things I never would have before. He has taken things(and people)from me that I couldn't let go of. The lord has guided me to focus on the important things, and leave all the small stuff out. He reminds me, daily, to give it all to Him. He will sort it out. I must lay it at His feet,walk away, and allow Him to heal wounds that no one else can.
I do it "all" because He gives me strength. I am not superwoman. I am not super Mom. I am just a weak, imperfect human trying to do better each day.
Grateful for the lessons I have learned, and for those painful ones I have yet to learn. I am allowing Him to mold me, because fighting against Him is so much more lonely and painful than growing close to Him.
Thank you, God, for lessons only you can teach.
At the beginning of Lilah's diagnosis, friends and family came out of everywhere trying to "help, pray, support, love." Most had never been near someone with a special needs child. Most didn't know what to say. Most tried as hard as they could to help, but no one really got it. As Lilah has grown, the number of calls, emails, visitors, etc have slowed down to an almost screeching halt. At times this journey has actually cost me friends. People I really thought cared about me. People I thought loved me, wanted me around, and would stick by me through anything. Some couldn't handle that the "new Katie" didn't sit back and get hurt, she was fighting for herself, and her daughter, and stopped allowing people to walk all over me. Some people got tired of "Lilah's story" and needed more "normal" friends with less "drama." a friend of mine who's husband is in the military and deployed often said, "it's kind of like people during a deployment. Many come out at the beginning to offer food, prayers, and babysitting, but as the months turn into over a year, people stop helping. They have had enough. They forget that your pain never went away. You are still in the predicament, even if they walk away to ignore it." (this is not a sad post, keep reading)
The people that stopped being my friends, walked away, didn't know what to say, couldn't handle "it" or me(the loud-mouthed Mama) had to be removed from my life. It sucked. It hurt. I mean it rocked me to the core where I cried day and night, BUT....I was relying on them to fill a void in me that ONLY Christ can fill.
I had to be completely broken, left alone in the bottom of the pit to see that I needed to rely on God for it all, for ONLY He is the constant. People are imperfect, messed up, say and do the wrong things, but only God can heal wounds or holes in our hearts.
God took people from me that I couldn't let go of. He took painful relationships from me because I allowed these "friends" to hurt me and I never said and did anything. I was the doormat. I allowed them to treat me like I had no worth. Having Lilah, having to work and push and fight for Lilah, allowed me to see more than just my worth, it allowed me to know my importance to God and my family. I am not bitter or angry with these people. I pray for them daily. I know that they need a deeper relationship with Christ so they can love others fully, so they can see people through His eyes.
During this time, I also began to try things I never would have before. I began running. I ran my first 5K last April. I ran my first 10K in November. I have been training, since June, for a Half Marathon. On Sunday, Feb. 27th I will be running the Disney Princess Half Marathon. I have had people ask me , "Why are you running?" or in a laughing tone, "You're still doing that?" YES!!!
I don't just run for me, for release of stress, time to pray,better health....I run for Lilah. Go back and watch my testimony from a few posts back. Look closely at the time when she cries and you can see those tears flowing down her cheek from fear and pain. I run because being a Mom of a Special Needs child requires me to get out of the bleachers, stop being a spectator, and fight. When I run and my legs are heavy, I see Lilah's face. I see how hard she works. I know that if my girl can fight to learn to walk, talk, and do "normal" skills...then I can get out and run and push harder each time. I run for my girl. I run because she motivates me to try harder, do something I have never done before. I cannot ask her and coach her to push and work hard if I don't require it of myself.
The Lord has taught me so much through Lilah. He has given me strength to do things I never would have before. He has taken things(and people)from me that I couldn't let go of. The lord has guided me to focus on the important things, and leave all the small stuff out. He reminds me, daily, to give it all to Him. He will sort it out. I must lay it at His feet,walk away, and allow Him to heal wounds that no one else can.
I do it "all" because He gives me strength. I am not superwoman. I am not super Mom. I am just a weak, imperfect human trying to do better each day.
Grateful for the lessons I have learned, and for those painful ones I have yet to learn. I am allowing Him to mold me, because fighting against Him is so much more lonely and painful than growing close to Him.
Thank you, God, for lessons only you can teach.
Thursday, February 17, 2011
GREAT news and a VERY happy Lilah
Today we started with Lilah's new PT. I was, quite honestly, VERY nervous, but I prayed and prayed and asked for prayers, and walked in knowing that I am her advocate, I know her best, and I know what she can and cannot do.
Her new PT came out with a student next to her, asked if it was OK that she help. I said, "sure." She asked me what my goals were, and I was very bold. I said, I dislike how this walker hits the back of her feet, gets stuck on her AFOs, and scares her more than motivates her. I said, "I want you to push her. I know you need to. I won't get mad if she cries. I want to be there to help. I won't cry, but I will want to." I told her that I just wanted her to talk to Lilah and prepare her before she does anything to or with her.
She watched Lilah walk and immediately agreed that Lilah needs a new assistive device. WOOOOHOOO! (FINALLY, I am being heard!!)
The new PT said she thinks Lilah needs to go down to an SMO on her left foot, but keep the hinged AFO on her right. (YAY! For small little improvements!)The entire time we talked Lilah was very quiet. She was obviously taking it all in. She would work with the new PT, but she didn't babble much. I wondered what she thought of all of this and then...
She went to work with Sarah, her OT. By the expressions on her face, the laughter in her voice, and her good mood, I would say that Lilah is happy with the changes....
and she really loves Sarah. But, don't take my word for it. Just watch this:
Don't you just LOVE that Sarah praises her, motivates her, and allows Lilah to be herself?!! ME too!!
Her new PT came out with a student next to her, asked if it was OK that she help. I said, "sure." She asked me what my goals were, and I was very bold. I said, I dislike how this walker hits the back of her feet, gets stuck on her AFOs, and scares her more than motivates her. I said, "I want you to push her. I know you need to. I won't get mad if she cries. I want to be there to help. I won't cry, but I will want to." I told her that I just wanted her to talk to Lilah and prepare her before she does anything to or with her.
She watched Lilah walk and immediately agreed that Lilah needs a new assistive device. WOOOOHOOO! (FINALLY, I am being heard!!)
The new PT said she thinks Lilah needs to go down to an SMO on her left foot, but keep the hinged AFO on her right. (YAY! For small little improvements!)The entire time we talked Lilah was very quiet. She was obviously taking it all in. She would work with the new PT, but she didn't babble much. I wondered what she thought of all of this and then...
She went to work with Sarah, her OT. By the expressions on her face, the laughter in her voice, and her good mood, I would say that Lilah is happy with the changes....
and she really loves Sarah. But, don't take my word for it. Just watch this:
Don't you just LOVE that Sarah praises her, motivates her, and allows Lilah to be herself?!! ME too!!
Wednesday, February 16, 2011
The problem is...
I can stand and coach Lilah to walk over, and over again, BUT, I don't think her walker should cause problems. I believe an "assistive device" should be just that....an assistant. Lilah's walker gets stuck on her foot, over and over in less than 50m of a distance. I have raised this concern with the PT over, and over, and her response was, "I see it as motivation to make her walk." I see it gets stuck on the top of the AFO, the back of her heel, and other places. Yes, Lilah has a wide gait, but I don't think Lilah should be getting scared of her walker because it pops her in the back of the leg. I asked the PT if we could try turning the walker around or a different device and I got a "No, she's not ready for that because..."
Watch this and see what I mean...
The problem I have with the PT telling me no is this: I am her Mama. I am with her 24/7. I am NOT the kind of Mother who hands her child to you, sits in the waiting room at therapy and plays on my phone. I am THERE. I coach, I help, I sing, I do jumping jacks, anything to distract her from the pain she is feeling. At home I do what they tell me to do. I patch her for 5 hrs/day. (If she takes one off, I put one back on.) I am determined! My wheels are always spinning with ways to help Lilah more. I have heard some of the "pros" tell me that Lilah is not "cognitively there." Oh really....well, my child, the one you are deeming "globally delayed/mildly retarded" is potty training and LOVES it. She tells me when she needs to go. She poops and pees on the potty and claps for herself when she does it.
So, here is one of my problems: the O&M specialist, who actually works with VI people, told me Lilah's walker is not correct for her. The O&M told me Lilah really needs something in front of her to warn her of what is coming. When I mentioned this to the PT she said, "I feel like I can't do anything right." OK, I am NOT here to hurt anyone. I am a HUGE part of this "team." When I tell you I see something, notice a change needs to be made, have another member of our team make suggestions, we cannot take it personal. My job is to inform you as much I can about Lilah so we can learn and grow as a UNIT! My goal, my fight, my determination, my will.... is for Lilah.
I believe that Lilah is a sponge that is absorbing all of this information and is SO ready to spread her wings. Our "team" needs to work together to help Lilah fly. Today Lilah has an evaluation for speech at Backus. Tomorrow we begin with a new PT. I am nervous about this new PT because I hear she is "stuck in her ways" like the other PT. We, unfortunately, didn't get the PT we had hoped. I am praying that the new PT will listen to me, understand my concerns and be willing to try something, even if it fails. If not....we will be leaving Backus and going to a new clinical setting for PT. ( I pray that doesn't happen because Lilah LOVES her OT, babbles with her, giggles, loves her, and is making great strides.)
Being an advocate for Lilah has taught me a LOT. Being an advocate means sometimes making people mad, but I pray that as I learn and grow, I can do this advocacy thing better and better. Prayers are greatly appreciated!
Watch this and see what I mean...
The problem I have with the PT telling me no is this: I am her Mama. I am with her 24/7. I am NOT the kind of Mother who hands her child to you, sits in the waiting room at therapy and plays on my phone. I am THERE. I coach, I help, I sing, I do jumping jacks, anything to distract her from the pain she is feeling. At home I do what they tell me to do. I patch her for 5 hrs/day. (If she takes one off, I put one back on.) I am determined! My wheels are always spinning with ways to help Lilah more. I have heard some of the "pros" tell me that Lilah is not "cognitively there." Oh really....well, my child, the one you are deeming "globally delayed/mildly retarded" is potty training and LOVES it. She tells me when she needs to go. She poops and pees on the potty and claps for herself when she does it.
So, here is one of my problems: the O&M specialist, who actually works with VI people, told me Lilah's walker is not correct for her. The O&M told me Lilah really needs something in front of her to warn her of what is coming. When I mentioned this to the PT she said, "I feel like I can't do anything right." OK, I am NOT here to hurt anyone. I am a HUGE part of this "team." When I tell you I see something, notice a change needs to be made, have another member of our team make suggestions, we cannot take it personal. My job is to inform you as much I can about Lilah so we can learn and grow as a UNIT! My goal, my fight, my determination, my will.... is for Lilah.
I believe that Lilah is a sponge that is absorbing all of this information and is SO ready to spread her wings. Our "team" needs to work together to help Lilah fly. Today Lilah has an evaluation for speech at Backus. Tomorrow we begin with a new PT. I am nervous about this new PT because I hear she is "stuck in her ways" like the other PT. We, unfortunately, didn't get the PT we had hoped. I am praying that the new PT will listen to me, understand my concerns and be willing to try something, even if it fails. If not....we will be leaving Backus and going to a new clinical setting for PT. ( I pray that doesn't happen because Lilah LOVES her OT, babbles with her, giggles, loves her, and is making great strides.)
Being an advocate for Lilah has taught me a LOT. Being an advocate means sometimes making people mad, but I pray that as I learn and grow, I can do this advocacy thing better and better. Prayers are greatly appreciated!
Tuesday, February 15, 2011
The best Hugs...ever(and a prayer request)
She doesn't just HUG...
She wraps her arms around your neck, pulls you in close and squeezes you as hard as she can...
and she adds a little "ugggg" noise through her nose too.
Thank you, God, for the gift of these hugs.
*PLEASE pray for an opening in Lilah's ENT's surgery schedule. We saw her ENT this past Saturday and she needs re-tubes(one fell out and the other is on the edge of the ear) and an adenectomy(her adenoids out) Last night Lilah cried from 12:30 am-2:30 am non-stop. This is VERY un-like her. We are praying that she be on the schedule soon and she will be able to be pain-free. Thank you VERY much!*
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