I Need to stock up on depends!

Monday, October 4, 2010

So my last blog I said that i would humor the school transportation people and put a diaper on Lily. But today I had forgotten to put one on her in the am. Maybe it was on purpose i forgot! Because i am so mad about the situation! And I really think Lily is peeing out of frustration for her being tied into the chair for so long with a miserable bus aide not talking to her. How do I know this you ask............because the aide doesn't speak english! Not to mention the loud spanish radio program that is on for the hour and half bus ride. so maybe it wasn't on an accident I forgot! And for my thinking she didn't need the diaper she had an accident! not only on the way to school but on the way home! Needless to say the aide was extremely mad! though she always looks mad when she pulls up to our house.

This situation made them so mad that when they got back to the transportation center they complained about Lily and her urinating on the bus. I told the lady I was sorry that I think it is because they don't like her and she is not happy on the bus. and that is why she wets her pants. The lady said well they are sitting right here in her office and they say Lily will look at her, the aide, and laugh and then pee. The conversation was dead after that,. I was told that for Lily to continue with school transportation she would need to wear a diaper!

So again, I am sooooo frustrated about transportation. I am so frustrated with potty training!

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I am going to try this challenge. I know as a mother to a Down Syndrome daughter, I am always looking to read about other moms day with there DS child. Its always so wonderful to read about the same joy or frustrations I, myself experience with Lily. Some days are so challenging and stressful that i can't imagine anyone else experiencing the same thing. and than I read a blog and there it is, the same challenges. Gives me hope that things will be better because they are actually normal!

I still have the same challenges with Lily. Potty training, behavior, her rejecting me, trying to reason with her, getting her off to school, etc. I thought Lily was potty trained except at night. But this school year she started wetting her pants on the way to school and on the way home. So after a week of this we were asked to put her in a diaper for the bus ride. In a way i thought this is exactly what she wanted to be in a diaper again. She is lazy at times and wants to be a baby and wear a diaper. Which, I have always told her no to! So now she gets to wear her diaper, at age 9, and be the baby she loves to be. I feel like this is definetly taking the 2 steps back again from potty training. I had decided since there was so much friction going on between her and the bus driver and bus aide, I would just please them by putting her in a diaper. But in a month i will not allow this anymore. She is a big girl!

I know how to get a hug!

Tuesday, June 15, 2010


If i need some Lily love............I know how to get it! I go in the pool with her and she will eventually want to float around with me! She holds out those pudgy arms and say "hold me momma", and of course, I swoop right in there and let her cling onto me as a little monkey would do to his mommy! And as we are floating around I receive a lot of kisses.

one step forward, two steps back!

Thursday, May 27, 2010

I don't know what went wrong! Lily has consistently been using the potty with success for a couple of months. Sure there is an accident every now and than, but, usually the accidents our only liquid! Lily has even went on her own and not waited for us to take her. Which has always been impressive to me when i see her on the pot from her own doing! And of course I go overboard with the praise when i see her doing this! So overboard in praise that sometimes i get teary eyed! It's funny cuz I don't think I was ever so excited with the other kids about them initiating going to the potty on there own. It was always just expected of them to do. They get an urge they go to the bathroom. But with Lily she is usually on a schedule of potty times.

For some reason, Lily decided to ignore all her body signs and chose to do a bm in her pants instead of going to the bathroom. She did get up from her seat, wear she was watching her nightly rugrats, and walked into the dining room were she couldn't be seen and messed in her panties. It would of been closer for her to walk to the toilet! I was so extremely disappointed. And i made sure she knew i was. I told her she was a big girl and wore panties, not a baby who wears a diaper, and soils in there diaper. Her father also was mad at her. We were not even sure how to clean her up! we layed a towel on the floor and looked at each other, not knowing what to do next! Lily was now embarrassed and feeling bad. She was covering her face and telling us "me baby"! We decided the best way to clean this up would be to cut her panties off of her and toss it in the trash. When she seen us use the scissors on her panties she really started to cry. All was good she got cleaned up, took a bath and went to bed.

This is were it concerns me. This morning she woke and wanted to wear her diaper to school under her panties. I told her no! She was only allowed to wear panties. but like i have said in my previous blog............there is no reasoning with Lily. she only understands what she wants and feels. So Lily kept her diaper on under her panties. I tried telling her she was a big girl and she said "I know mommy". and would point to her panties. I said but you are wearing your diaper, which makes you a baby and she would grab her panties and say "no mom" and give me this attitude that i was crazy silly for saying that to her. I think she was thinking her diaper was invisible! I could only laugh at her silliness! Did her accident traumatize her so much that she doesn't trust herself to go to the bathroom on time? Am i going to have to hide her night diapers so she cant wear them to school? So my advice to all the mommies out there never ever cut panties off your child! I think that might be too visually scary to kids!

What if........One Less Chromosome

Sunday, May 23, 2010

From time to time I am guilty of thinking what would are world be like if Lily was born without that extra chromosome. Usually, these thought are triggered by coming in contact with a child of Lily's age. That is when i usually realize what Lily would be like without the extra chromosome. She would be taller. she would walk more gracefully. Her features would be more pleasing to general society. She would be able to communicate with words. She would understand reasoning. She would be able to express her stresses and joys! She would be able to go outside and play with friends. She would have friends! Her world would be so different, as much as our world would be. Fortunately, she doesn't know how her world would be different. she is, who she is, "LILY"!

My life would be different. I would be more active with the kids, go places freely, because there would be no fear that Lily would plop all 80 lbs of herself down on a dirty floor because she wasn't understanding why................(and this was a problem even at 20 lbs), when they don't want to move, you can't move them! I would have a peace of mind that if anyone hurt her in any way she would be able to tell me! Another big change would be I would be able to feel like an accomplished mom! I have to explain this one! On a daily basis our children has needs, all children, Ds or not, and as mothers we tend to those needs, whether it is physical needs or emotional. And to feel accomplished, is to meet all their needs. But with Lily it is only when she will let me. If she wants a cup of water, and she doesn't want to receive it from me i have to get her sister or someone else to hand it to her. If Lily falls and hurts herself, as a mother the first instinct is too hold her and tell her it will be ok. But with Lily, most times she wont let me comfort her. If I want to look at her with a lovingly mommy look, you know the look that tells your child you love them and are there for them in one glance, and Lily doesn't want to be looked at she will let me know by holding her hand across her face! Even simple thing like tucking her in at the end of the day I am subject to rejection! This all hurts so much! Makes me feel like a failure. I just want to soak her in my love and care! As I pause of how different my life would be I realize there is nothing more I would want to have different

Lily with one less chromosome, would be able to communicate about how her day was! What her friends name are. what she had for lunch. If anyone was hurting her feelings. If she needs anything for school. And the most important thing that i so miss would be to reason with her! Oh yes, the Lily with one less chromosome would be able to understand that you can't take 3 backpacks to school! You can't color yourself with markers during class! You can't brush your teeth before you eat! The one less chromosome Lily, would understand when i said you can't wear a tutu to school! She wouldn't roll on the ground and not move if she didn't get to do it her way! This Lily with one less chromosome would let me comfort her and look at her with my lovingly mommy look! She would love me even if everyone else was around! I would never be told "no mom, get out", when i tried tucking her in at night!!

If Lily had one less chromosome she would be different, our family would be different, i would be a different person. I would not have that daily dose of wonderment and joy that she can bring to us! I think of all the times i have been so frustrated with her because I could not reason with her only to laugh later when all the craziness had passed! Everyday there seems to be such an accomplishment made by her a milestone met that makes my heart so happy. It keeps my spirit lifted. If she didn't have that extra chromosome i think life would be so stale! How many parents can say there child is so proud of the homework they do? The Lily with one less chromosome would not sit for hours doing her own thing. She would not be able to be real and true to her feelings. She would not act like everyday is like Christmas morning waiting to unwrap the day that she knows is full of gifts for her whether it is a new number she can count to or remembering to stay dry! her day is so full of gifts! Which makes my day full of gifts, too!

So, whenever i come across a child her age and wonder what Lily would be like if only she was born with one less chromosome, I than turn it around and think what we would be missing out on if Lily was born with one less chromosome!

She wants to be just like her sisters!

Friday, May 14, 2010

Lily watches her sisters more than i thought she did! She loves to copy them and try to act like them. Her sisters our 13, 16 and 28. Majority of the things she mocks our things that I would think help her to grow. An than there our the things she reenacts that are not really age appropriate. For example: This morning I woke up to a trail of blood and Lily in her room with blood all over her legs. I was trying not to freak out in a way that she would see me. But, internally i was hysterical! I was staring at her legs wondering why she wasn't crying, and why she had such a guilty look. I asked her were her booboo was and that is when her bottom lip started to quiver which i knew was the pre meltdown! Once she started crying and i looked for the booboo she showed me the back of her legs which were skinned and gouged. I still can't figure out if her crying was from the pain or the fact that she was doing something she knew she wasn't suppose to be doing.


She than pointed to the bathroom and there on the bathroom floor was her sisters venus shaver. I was so mad! I had told the girls over and over to always keep there razors up high, for just this reason! I cleaned Lily up and was not quite sure how to bandage it. Since most the skin was scrapped so deep and than some gouges here and there. She was demanding with just one word her "Dora" bandages! Her Dora bandages she likes to use them on everything even make believe booboos, But, before i bandaged her, I needed to have her sisters see what happens when we our careless with dangerous things. I woke them up, which was an hour before normal wake-up, and brought them into the bedroom where lily was laying. Lily's legs were very bloody again without the pressure being applied. They took a look at Lily and started to cry. I know they felt bad, now. Mission accomplished! I bandaged her up the best i could and realized the band aids were already soaked thru. So i applied more pressure and pot some ointment on. She seemed to forget all about it. Until, I had to take her back in the bathroom to finish getting ready for school and she seen the razor and started crying again. saying, "No! No! No!" She was very upset. and than after i hid the razor she seemed to forget all about it, again. It always amazes me how much pain they can tolerate. And how long the pain does take to register in there brains.

I waited all day for a call from the school asking me what happened to Lily and to come pick her up. But that call never came! When she did come home i asked her to lay down so i could clean her legs again and to show daddy. Her lip started quivering again and I could actualy see her reliving it all in her head again. She would not let me see her legs. She even ran from me! I decide to wait and just let her decide when it is time to clean and bandage again. All it took was Daddy sweet talking her and she was on her belly being still so i could clean her wounds again.

I don't think this will happen again! I don't think Lily will ever touch a razor again even if her sisters make a mistake and leave one out. Which they BETTER NOT!

The Special Mother by Erma Bombeck-Classic

Sunday, May 9, 2010

I thought this would be perfect to share on Mothers day!

The Special Mother
by Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Mothers Day Gift

Friday, May 7, 2010

Lily is my youngest child out of 5. So, I know how proud and special it is for the kids to make me a Mothers Day gift at school. They never were able to wait til Sunday to give it to me. They were always so excited that as soon as they got home from school on Friday they would hand me the gift they made with love. I have saved everything my kids have ever made me from cards to plaques.

Lily is no different from the other kids. Every year the teachers take time to make something special for the kids to give there mothers. The difference is Lily is so excited to show me what she has made, but never lets me have it! She doesn't realize it is a gift for me. It is quite funny how a beautiful picture of her and a poem about mothers she thinks it is for her! We try to tell her that she made it just for mommy and of course i make a big deal and thank her over and over. and she says over and over "Not for you mommy"! It is quite funny! It is quite sad!

This mothers day gift is a picture frame that she had made. It is quite beautiful, but of course i am partial to her crafts. She was so excited to show me. And she was so excited to make sure i did not touch it! And she was so excited to put it on her nightstand! In time i know she will forget about it and i will be able to move it to my room. Where i can look at it and think of how proud she must of been cutting, coloring and gluing.

I wonder at what age she will realize that what she creates for mothers day actually belongs to me!

Signs of health or new habits

Monday, May 3, 2010

Lily was diagnosed with hypothyroidism at age 5. She has taken synthroid everyday and tested 2x a year to make sure her TSH level is right and the dosage is correct. So far, for the past 4 years her dosage has been correct. We always thought the only way we would know if her dosage was off would be thru blood work. But Lily was giving us signs for quite awhile that her dosage was off. And all those signs i just played it off as a weird new habit of hers! I really learned a lesson in listening to Lily's actions to know how her health is.

Here is some of her behavior that i should of taken it as a sign of her thyroid:

Lily started wanting to wear two shirts too school. around the house she liked to wear a sweater, robe, or jammies. i just thought she liked the security of 2 shirts and maybe the classroom was cold. I also thought that maybe she was coping someone who might be doing that too!

Lily was craving carbohydrates! She is a creature of habit! she likes something she will want it all the time!

Lily gained some weight! about 4lbs! All the carbo eating caused the weight gain!

Lily had less energy than usual. She just likes tv!

Lily's skin became so dry and rough on her extremities. Her arms felt like sandpaper. I need to lotion her more!

All these signs are so charastic of the thyroid, but i had excused them all as she gets into her little habits. I will be so much more cauntious in the future! I always thought my biggest problem would be to remember to give her a daily pill!