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!

Today is the perfect day to share this………Happy 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.”

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 copying 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! the carbo eating caused the weight gain!

Lily had less energy than usual. Lily’s skin became so dry and rough on her extremities. Her arms felt like sandpaper. I I thought i just 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 cautious in the future! I always thought my biggest problem would be to remember to give her a daily pill!

This morning I was getting ready for work when Lily walked in with a hand full of vomit and her hair all matted like she had gotten sick in her sleep.  I reacted right away cleaned her up and by the time I was done cleaning her she started to vomit again. I walked her quickly to the toilet were she wanted to sit not bend over it.  I thought, oh no!  she has to do both!  And both she did!  It was so sad.  I have missed 2 days of work already this week, but i did not hesitate with the decision to call in for a third.  After all, I have FMLA, for her and just this reason.  My baby needed me!

I thought how lucky I was to have a reason to hold on to my girl real tight today.  I needed to be close to her.  Not only becuase she is sick, but because i needed the comfort of knowing she was in my possession.  I am sure all mothers, in the DS community, who knew the George family, felt the same way.  Yesterday, we were reminded how precious life is.  And how we can have that little love bug in our arms one moment and the next we don’t.  So, it was a bittersweet day.  Lily was sick, my heart was aching for the George family, but i got to be home with her and keep her under my wing.  Its these days that I wish I was a stay at home mom.

I am in mourning right now for a child I have never met.  I felt like I knew her thru her moms daily blogs.  My heart is so heavy and I cant stop thinking of what the mothers heart must feel like now!   I can only imagine that the phrase “I felt like my heart has been ripped out”,  is probably the perfect description of how her heart feels.

This poor little angel has had to endure so much in her 8 years of life.  The have been triumphant over everything that has been thrown at them.  So why now?  Why was she taken from her family now?  I don’t know the details of her death all I know is she is an angel know.  And there her picture is still shining so brightly on my facebook page.  The picture that had recently been added as the moms default pic.  The pic that i had commented to her mom that looking at her picture made me feel so much joy in my heart.  Something about her beautiful smile!  A smile from the soul to touch a soul.

The pain of this families loss is probably going to touch every mother who has a DS child.  For we know how very special they are to us.  The way we can be so down in our day and they always can sense it and say or do a little thing that makes a joy overtake us.  A love that is unexplainable.

I can’t stop looking at Lily and being overcome with grief for this family.  I can’t stop holding onto Lily and thanking the heavens that she is so healthy.  I can’t stop this feeling of wanting to never let go of Lily.   I cant stop wondering what if it was Lily.  Our Daughters our the same age.  I always looked at her photo and thought wow they look so much alike!  And I can’t stop this feeling of sorrow for a stranger that i had only knew thru the Internet world.  May the family fine strength thru this time.

I know that Lily loves me.  Usually, when I am the only one around she lets me play, hug and kiss on her!  and she loves my attention.  But again, this is when there is no one else around.  It is heartbreaking at times for me.  Especialy, as a mother when all I want to do is comfort her, play with her, or even just look at her!  If I am caught looking at Lily while I am not in her “mom mood”, she will bark at me “NOT YOU MOM”!  And that was her first words she had ever learned to group together!  I know i am being too sensitive at times in regards to feeling like Lily doesn’t love or need me.  Deep inside I know, she knows, I will always have her back!  and I am always there for her when she chooses me.

Recently, I found a way to get her to love and play with me every evening!  I was so excited when I realized I could have this nitely ritual with her and she wouldn’t even fight me off.  Infact, the exact opposite!  She will beg for mommy!  But, I knew in doing this it was extremely selfish on my part.  For this meant breaking of the nightly ritual of her going to bed so obediantly.  This meant breaking her pattern of her falling asleep all on her own.  I am breaking the structure that every mother dreams of having her child do!  Lily is such a creature of habit.  So, I knew that this could be the start of an all new nightly ritual.  No going back!  And truthfully, I am selfish I could only think of my needs for wanting to be the last person she had contact with for the day.  It meant to me  i would get that little bit of daily love I so desperately searched for everyday with her.  It meant that I didn’t have to be bothered by the fact that my daughter wouldn’t even let me tuck her in at night and give her that last kiss for the day.  It has worked out awesome for me and my need to be loved by her!  Her dad says its bed time, and Lily squeels, I want Mommy!  The words I ache to hear!  And he tells me I created a monster!  So every night……….I chase Lily to her room and get her blankie and baby and put it on the couch next to me!  Where she lays down on the couch and we do this little rutual with the dancing of our legs, she covers me, i cover her!  and she says the most heartwarming “I LOVE YOU MOM” , hearing her say it the way she says it, her last words for the evening before she drifts off, makes me forget all the “NOT YOU MOM” moments.    I know everynight she is mine and all mine!  And anyone who tries to break her away from me and put her in her bed she cries for mommy!  It just feels so good!

Last night I wasn’t there for this new ritual of hers.  And the daughter who always went to bed so good.  even on her own at times.  was crying hysterically.  She would not go to bed without her mommy!  and yes when my husband told me this i got this very proud feeling of being so needed by ms “NOT YOU MOM” girl!   He said i had created a monster and ruined her perfect sleeping habits.  And i knew i should feel guilty!  I knew i should feel bad!  And everyone in the house had to hear her torturous screams for mommy!  My husband told me I shouldn’t continue this bad behavior for my need to bond with her.  I hate the thought of not having this new nightly ritual with her!  And I know that all it will take is a couple of nights of her crying for me and the couch and she will be right back to her old habit of crawling into bed and saying “NOT YOU MOM” when I try and kiss her goodnight!

Lily was transfered to a new class on her 9th birthday.  It was also the day Lily got a violation on the bus and we were told  Lily would have to wear the safety harness on the bus.  This gave me such anxiety.  How could they expect my baby girl to be strapped so tightly for so long!  The 5pt safety harness seemed like a torture device for the bus.  I made some phone calls.  and like i expected i got some very generic answers.  But the one thing was clear, Lily had to wear the harness to be safe on the bus.  After, a couple of days of seeing Lily happily get on the bus and sit in her seat and get adjusted in her harness i seen she was happy!  She was excited!  She was secure!  The word “secure” brought me back to when she was a baby.  She was not happy or comfortable unless she was wrapped tightly in her blanket.  And even though, i knew wrapping her tightly would be the only way she would be comfortable and content I had always felt  anxiety about wrapping her!  Like i was torturing her!   Lily was my 5th baby, so, I knew babies needed to be wrapped tightly.  But that was for the first month or two.  Lily never outgrew wanting to be wrapped.  The tighter the better!   She was my little burrito!   I was told that this was normal for children with sensory issues.   So on her long journey to school it was just too much for her to handle.  Too many options for her body and mind.  Her Harness ended up being the exact opposite of the torture device I imagined it to be.   It is her security blanket!

Lily might not have words to express to me how she feels about things. But her expressions tells me just as much! And I have a peace of mind knowing she is happy and secure !

Lily has had a tough year on the bus.  They combined her route with another route.  and it now takes her 90 minutes to get to school and to come home from school.  It might not be so bad if there was a fun chaperone with her.  But the bus aide they have is an elderly spanish man who is always pissed off and annoyed with Lily.  There have been times that before the drivers even open there door you can hear a spanish talk radio on.  It breaks me heart to think of the long minutes she has to endure with those miserable old men.

On occasions they have mentioned that they would like to put Lily in a 5 pt harness for her own safety.  i dont agree!  she wears a seatbelt just fine and if she is having behavior problems taking off the belt I feel that is what the bus Aide is for!  On one occassion she came off the bus covered in marker.  and they spanish driver and aide were mad!  they said she had colored all over the seat and the window.  I wanted to know where was the aide that he could let her get away with so much graffitti??  She is a special needs child not just physically but mentaly and she needs to be watched constantly!  Most the time she comes off the bus with her shoes off, maybe a shirt(she wears an undershirt), and her socks off.

On her birthday she was extremely overstimulated.  she was transfered to a diferent class, her new class had a party for her and her old class had a party for her.  And from the moment she woke she knew she was a princess for the day!  So to say she was overstimulated for the day is putting it mildly.  I am sure she was extremely excitied to get home too and open her presents and have her birthday cake!  So her bus ride must of been extremely long for her that day with her mind anxiously awaiting more birthday festivities.  When she pulled up at 5pm! yes 5pm!  her bus driver was mad!  they said she was breaking all the bus rules and they were going to have to give her a written violation and she would have to be harnessed in from now on!  Of course this is for her safety!  Sure enough the following day was a official written violation!  and to top it off her new teacher emailed me to let me know that lily’s behavior on the bus has become a safety issue.  almost every other word was spelled wrong in her email!  including the word “BUS”  she spelled it “BUSS”!!!!!!!!!!  so know i am feeling not only concerned for her bus ride, but the fact that her teacher cant spell!

Today the bus picked Lily up and i noticed her being put on the opposite side she usualy is on.  than i noticed that he was taking along time to put her in her seat belt.  so i went to the bus door and the driver shut the door on my!  i looked back and the aide was still adjusting straps.  i said to myself oh no they are using the 5 pt harness that they have threatened to use on her for the past year!  i wanted to shout and bang on the door to get Lily out of there!  but i stood frozen.  my mind racing on everything i should be doing or saying!  If it was a half hour drive to school the harness might not be an issue. but it is an hour and a half!  how can you sit strapped to a bus seat for that long!  not being able to move anything!

The sad thing is when Lily comes home i cant ask her how her day went or how her bus ride was.  she cant tell me if someone is hurting her. or if something is hurting her.  This is the same county that a bus driver left an autistic boy in the bus for 6 hours!  thinking of that poor boy on the bus all day not knowing what was going on and being harnessed makes me still cry!   i feel at a loss about this.  i just needed to vent!