Abby Girl's Wish Trip MAW/GTKW Pre Trip Report Feb 24 - March 2, 2011

[kailatilear]

I hope Abby is feeling better soon and that her new brace brings her some much needed comfort. I can't believe your trip is so soon, less then a month to go!!!

Thank you so much!!!! I know 27 DAYS!!!!! We are getting so excited.

 

[Mom2mitokids]

I love all the pictures. Abby is one strong little girl. looks so happy in all the pictures.

 

[kailatilear]

I love all the pictures. Abby is one strong little girl. looks so happy in all the pictures.

Thank you and yes she really is. I think all our kids with sickenss and disabilities are stronger than most people realize, with everything they have to go through.

 

[blessedmom4]

Thank you and yes she really is. I think all our kids with sickenss and disabilities are stronger than most people realize, with everything they have to go through.

I agree with that 100 percent...we can only post a glimpse to all they endure on a daily basis and with smiles on their faces, just like precious Abby!

 

[Mom2Miracles]

I think all our kids with sickenss and disabilities are stronger than most people realize, with everything they have to go through.

Soooo true!!!

 

[kailatilear]

Well hopefully Abby will be able to return to school tomorrow after having to miss this past week. Her back seems to be a little better tonight, so keeping our fingers crossed. I took her to the eye dr. yesterday for new glasses and I forgot all about telling them not to the the test that blows the puff of air in the eye, well they did it to one eye and she jumped so hard that she started crying right there in the seat and couldn't breath because of her back pain. I felt horrible, as a mom I should have remembered this

Lately with everything going on there are times I feel like a horrible mom. I feel guilty for her having this disease, I cry when I see other children playing and doing things that Abby can't do, but should be able to do. She actually said that she can't wait to go to heaven so that she doesn't have glass bones anymore. I know what she means, but as a mom I take that so wrong.

I have alot of issues going on with my feelings towards "healthy" people, that I know I shouldn't be having.

Please tell me I am no wrong in feeling this way, that when we have sick or disabled children it is normal, because I am feeling like a horrible person.

 

[smileycrissy]

Oh Deena, you are NOT a horrible mom! Don't ever think that!!!!

You do your best and that is all that can be expected. I am sure that your kids couldn't ask for a better mom. We all have our days where we feel down and gloomy but please don't feel that you are horrible mom. I can't imagine how tough it is for you to see her having to stay indoors, but please try to think of it positively. I truly believe that God has his plans for people and why he does the things he does. We may not know why he wanted Abby to have her disease but I am sure one day you & Abby will realize the meaning for it. I hope that makes sense.

And also, feel free to vent any frustrations you have here. We're all here for you. I just don't want you thinking you are horrible because you are not. Please give Abby a hug from me and tell her I said for her to give to a hug to you on my behalf.

 

[that's nice]

Lately with everything going on there are times I feel like a horrible mom. I feel guilty for her having this disease, I cry when I see other children playing and doing things that Abby can't do, but should be able to do. She actually said that she can't wait to go to heaven so that she doesn't have glass bones anymore. I know what she means, but as a mom I take that so wrong.

I have alot of issues going on with my feelings towards "healthy" people, that I know I shouldn't be having.

Please tell me I am no wrong in feeling this way, that when we have sick or disabled children it is normal, because I am feeling like a horrible person.

I remember walking out of the hospital 2 days after Juliana was born, driving home, and looking at my wife with fear in our eyes saying- this is it, we are on our own now. But the thing is, you are not on your own. If nothing else you have found a great group of people here on the DIS who are supportive, knowledgeable, and caring.

You are not a terrible mother. You have the smarts and the faith and the LOVE to continue give to Abby. I think everybody has feelings or thoughts at one time or another that may not be the best. No one said that our road through life would be easy and sometimes you do have to take it one day at a time. I don't think you are a terrible person... and we are here to listen when you want us to.

 

[kailatilear]

Oh Deena, you are NOT a horrible mom! Don't ever think that!!!!

You do your best and that is all that can be expected. I am sure that your kids couldn't ask for a better mom. We all have our days where we feel down and gloomy but please don't feel that you are horrible mom. I can't imagine how tough it is for you to see her having to stay indoors, but please try to think of it positively. I truly believe that God has his plans for people and why he does the things he does. We may not know why he wanted Abby to have her disease but I am sure one day you & Abby will realize the meaning for it. I hope that makes sense.

And also, feel free to vent any frustrations you have here. We're all here for you. I just don't want you thinking you are horrible because you are not. Please give Abby a hug from me and tell her I said for her to give to a hug to you on my behalf.

I remember walking out of the hospital 2 days after Juliana was born, driving home, and looking at my wife with fear in our eyes saying- this is it, we are on our own now. But the thing is, you are not on your own. If nothing else you have found a great group of people here on the DIS who are supportive, knowledgeable, and caring.

You are not a terrible mother. You have the smarts and the faith and the LOVE to continue give to Abby. I think everybody has feelings or thoughts at one time or another that may not be the best. No one said that our road through life would be easy and sometimes you do have to take it one day at a time. I don't think you are a terrible person... and we are here to listen when you want us to.

Thank you Crissy and Tim for you support. I am feeling so much better today, I guess I was just having one of those days. I knew I could vent here and that the people on these boards could trully understand how I was feeling, it is wonderful to have a place to finally vent and have people that finally understand. So with that a BIG THANK YOU!!!!

Abby did go to school today, it was a 1/2 day today, so that was good to be able ease here way back in. She was so happy to see her friends at school today and I was so excited to see her smile.

On a WONDERFUL note, only 23 MORE DAYS!!!!!

 

[smileycrissy]

Woo-hoo for 23 days!!!

 

[mommy2mrb]

Deena, I am so sorry you had a bad day.....you ARE NOT A BAD MOMMY....God gave you to Abby for her mommy because he knew you where the right one for her!!! know that in your heart!!!

I can't imagine going through what you all have endured, but please know we are hear for you to vent, scream whatever you need to do! I have gotten such great support this past year since my husband died from everyone on thes boards....we are a family, through good and bad!

on a happy note, glad Abby got back to school and enjoyed seeing her friends, hope her pain level's are better!

sending a BIG OLD , be good to yourself, it's the hardest thing a mommy has to do...yes I'm learning how to do it too...but we need to take care of ourselves too!

 

[kailatilear]

Deena, I am so sorry you had a bad day.....you ARE NOT A BAD MOMMY....God gave you to Abby for her mommy because he knew you where the right one for her!!! know that in your heart!!!

I can't imagine going through what you all have endured, but please know we are hear for you to vent, scream whatever you need to do! I have gotten such great support this past year since my husband died from everyone on thes boards....we are a family, through good and bad!

on a happy note, glad Abby got back to school and enjoyed seeing her friends, hope her pain level's are better!

sending a BIG OLD , be good to yourself, it's the hardest thing a mommy has to do...yes I'm learning how to do it too...but we need to take care of ourselves too!

Lisa, Thank you so much. Some days just seem so overwhelming with everything Abby goes through. There are days when seeing her in that pain kills me. It is so wonderful to know that this is a place I can come to when I am having good and bad days. I cannot imagine what you have gone through with the death of your husband, but please know if you just need someone I am here.

Yes, I am having a hard time learning how to be good to myself as a mom. We as mothers always put ourselves last and sometimes we need to just do what we have to do as a mother to put ourselves first, if you figure that out please let me know.

 

[mommy2mrb]

Lisa, Thank you so much. Some days just seem so overwhelming with everything Abby goes through. There are days when seeing her in that pain kills me. It is so wonderful to know that this is a place I can come to when I am having good and bad days. I cannot imagine what you have gone through with the death of your husband, but please know if you just need someone I am here.

Yes, I am having a hard time learning how to be good to myself as a mom. We as mothers always put ourselves last and sometimes we need to just do what we have to do as a mother to put ourselves first, if you figure that out please let me know.

thanks, I am here for you too!!
it has been tough, but I just do one day at a time! I received a poem from one of Megan's teacher on the anniversary of Jim's death

"life is not about waiting for the storms to pass....
its about learning how to dance in the rain"

I think part of that is learning how to appreciate the little things, happiness and joy that they bring, and to be better to ourself....I am trying hard to learn how to dance in the rain....try to do something just for yourself if you can...I get my nails done twice a month...and I also take a few minutes each day with quiet, and just breath nice and slow...it really makes a difference to my day!

 

[Mom2Miracles]

You are SO entitled to days where you are angry and frustrated about what your daughter is going through. I would be more worried if you were sunshine and lollipops 24/7. It IS stressful having a sick child, or having a child who can't be like all the other kids. You are not alone, and even though our kids are all going through different things, we can all relate to your feelings. Lots of *hugs*

 

[my2girlsrock]

Well hopefully Abby will be able to return to school tomorrow after having to miss this past week. Her back seems to be a little better tonight, so keeping our fingers crossed. I took her to the eye dr. yesterday for new glasses and I forgot all about telling them not to the the test that blows the puff of air in the eye, well they did it to one eye and she jumped so hard that she started crying right there in the seat and couldn't breath because of her back pain. I felt horrible, as a mom I should have remembered this

Lately with everything going on there are times I feel like a horrible mom. I feel guilty for her having this disease, I cry when I see other children playing and doing things that Abby can't do, but should be able to do. She actually said that she can't wait to go to heaven so that she doesn't have glass bones anymore. I know what she means, but as a mom I take that so wrong.

I have alot of issues going on with my feelings towards "healthy" people, that I know I shouldn't be having.

Please tell me I am no wrong in feeling this way, that when we have sick or disabled children it is normal, because I am feeling like a horrible person.

You are absolutely NOT a horrible Mom.... You are a normal, loving mother who hates what her daughter is going through & wishes that you could change it so that she didn't have to suffer anymore....

There are times that I feel like that because if Taylor is in pain, getting sick from the chemo or asking me "Why she has to go through all of this?", we are their moms & it is in our souls to think that we can make everything feel better & fix everything for them. It is very hard to accept that there is nothing we can do make them feel better. I feel very bad for you right now that you are having such a hard time....I am sending you big ....

Thinking of you....

 

[jwallaceent]

I just wanted to chime in and say hello. Your Abby is just the cutest! I noticed you live in Richmond, I live just east of Fredericksburg. We fly out of Richmond on March 23 to Disney for Brooke's MAW! I know you are getting super excited and I wish you a very safe and fun trip!

I look forward to hearing about your plans and trip details! I just love the idea your boss did for Abby! I will be making a countdown calendar for Brooke this weekend!

Wishing you all the very best!

 

[kailatilear]

I want to thank each and everyone of you for the positive and thoughtfulness that you have given me. I wish I could personally hug each and everyone of you. Things are going a little bit better. Tilear was in the ER yesterday morning with severe abdominal pains, they are thinking an ulcer, but I will know more today when he goes to his pedi. How can a 14 yr old have ulcers? I know it is possible, but I have them and have never been in the pain that he was in yesterday.

I have some more pictures to post this evening when I get a chance, we have had some extra pixie dust this week

 

[blessedmom4]

I hope it is NOT an ulcer; although I don't want it to be anything! I had ulcers at age 8, so it is possible.

Glad things are bit better, looking forward to pictures!

 

[kailatilear]

I hope it is NOT an ulcer; although I don't want it to be anything! I had ulcers at age 8, so it is possible.

Glad things are bit better, looking forward to pictures!

When you had ulcers when you were young, did it double you over in pain and last for hours? I am just curious as how bad the pain can get. I have them, but not that kind of pain.

 

[kailatilear]

So as many of you know the past few days have been rough here, however, there was some pixie dust sent our way through the BIG GIVE!!!!! I can't thank this group enough for everything they have done for our family. It seems like in the weeks that major health issues come up and I feel I can't take much more, there is something special to come to lighten my day.

First up....An awsome Mickey T-shirt for Tilear. Thank you so much Angie (Diz-Mommy). Tilear loved the shirt and loved the Camo Mickey. He loves camo and this just was totally him. He loved his name on it also.

Next up...

A very special thank you to Katie and your family. Abby loved the Disney Apples to Apples game and the scrapbook took my breath away. I cannot believe the work you put into it, it is amazing. Thank you for the extra's put in with it. I will let you know if I have any problems once we get back and I start putting it together.

A little story about this. Abby saw the UPS truck across the street and started yelling, it's for me, it's for me. The UPS man came up and said I think someone is expecting this. I seriously thought that he was going to the other house, but Abby knew it was for her.

The BIG box...

Hmmmm Wonder What It Is????

Apples To Apples, Do you think she is excited???

Kaila wanted to open up the next one, since she hasn't really received anything yet...

Kaila loves photography and scrapbooking so she will really get into helping with this.

Me with the extras for the scrapbook, Steve just had to get a pictures

The kids with all the goodies...

Thank you so much too all the BIG GIVERS this is trully amazing, you all are wonderful.