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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Wednesday, October 12, 2011

31 for 21, See my child, not her syndrome

I took my oldest to the ENT
He looked at my daughters chart
He said those adenoids and tonsils have to come out.
I said, but doctor, you did not look in her throat
He said, everyone with Down syndrome has to have that operation.
I said, please look at her tonsils,
He looked and said they were not so bad.
I shook my head in sadness.

I took my sweet daughter to the orthopedic doctor
He looked at her chart and said
Of course, she has bad ankles,
She has Down syndrome
He did not look at my daughter
I said, but doctor look at her feet,
I think she needs orthotics,
He looked and agreed with me,
I dropped my head and sighed.

I took my two daughters to the GI doctor
He was in a hurry because he had to get to the hospital.
He looked at their charts and asked me what was wrong
I told him one was spitting up and the other was percolating
He said most kids with Down syndrome have GERD and
He threw scripts at us as he rushed out the door.
He did not look at my daughters or order tests.
I shook my head in exasperation

Dear medical professionals, when you look at my daughters
Or see their diagnosis on a chart, do not assume
That just because they have Down syndrome,
They automatically have every ailment associated with it.
Look, listen, feel, do tests, and then tell me
What is wrong with my child?
My daughters are people, not a syndrome,
They deserve the same medical care that you would give any other child.

While I have your attention, when I come in with my child and
tell you something is wrong, please listen,
I know my child better than you do.
Maybe because I actually LOOK at her

Kris Levario. 2008 Copywritten

Monday, October 10, 2011

Not again, in memory of a sister survvior

In the world of cancer survivors, something happens when you fight the fight with others, you develop a bond like no other, I imagine soldiers would understand that bond. In support groups, you can talk about topics your family may not want to hear about. Every single woman I have known with breast cancer wanted one thing; to survive. All of us went though amputations (yes mastectomies are amputations) or lumpectomies, got poison dripped through our blood streams or were burned by daily radiation for weeks on end, many had chemo and radiation. We did it to survive cancer, most of us were NED after treatment, some for many years, some for only weeks.

Those with metastasis had ongoing cancer treatments for years, it weakened bodies, stole away jobs, but only rarely did it weaken the spirit. Each woman who marched the hard march of stage 4 breast cancer did it with resolve, strength, and will to live.

It is the message we all hated to get; "I saw the oncologist today, the cancer is back" the floor dropped out beneath us and we felt fear for our dear friend, we know the slow march had begun, very few people beat stage 4 breast cancer. A minuscule amount maybe, blessedly lucky women. So we all know it is only a matter of time, even though we also pray and pray for remission. None of us give up on each other, not even in the very end, I think we all pray for miracles.

So it hurts when we lose a friend, hurt does not even describe the shock and pain, we are devastated, angry, forlorn... Not again, not again, not again, not again.

I and my sister survivors at BCSN lost another dear friend today, she has not been a presence the last year as she has been ill , in and out of hospitals, but steadfastly working at her job as editor of a newspaper. Kathy was the first person to welcome me as I timidly introduced myself to BCSN in 2003.

Kathy once said to me:

I have to reply to the comment that God only gives you what you can handle. It's true but I have a friend who said, and I don't if she was repeating a saying she'd heard or what, but she said: I know God only gives me what I can handle, but I wish he didn't think I was so competent. Hang in there. Kathy

Kathy was more than just a good friend to all of us during those first years, she was a advocate for survivors, and shared her journey weekly in a journal for her newspaper. She was quick to offer support and a shoulder to lean on to our group members. When her cancer came back she never once complained, she just faced it head on with her customary determination. I was amazed by her resolve and strength.

When I told our group we were adopting, she was the first person to donate funds in support of our decision, and then followed that with package after package of books she bought from estate sales. She hoped we could sell them and make more money towards our adoptions. That was what she was like, always lending a hand, always the first person to send money for flowers for a sister survivor who was declining. I personally felt desolate when her posts fell off as she got weaker from treatments. In an online group that is never a good sign, and for those survivors who communicate via emails, it is terribly difficult to accept, because you know, this is it, the beginning of the end.

Kathy, I wish I could have talked to you to tell you how much you meant to me, I hope you already knew, I will miss you forever my dear friend.

Sunday, October 9, 2011

Wow, I guess we are not doing so well-31 for 21

I meant to post daily, somehow with three kids at home all day and a new puppy, I just cannot do it.

Today Tom spent half the day moving the fallen tree to the front yard for bulky pick-up.

I took Lola to her first puppy class, she snapped at the instructor over and over again, which kind of made me feel relieved that even a trained professional could not stop her easily. Although I can see I have a lot of work ahead of me. At least she is inhibiting her bite now. I learned that even though I am fine around Lola, a room full of puppies brought my allergies on full force and I have been miserable all day.

Kara is feeling ill, she has been sleeping a lot and has a runny nose, I am hoping it is seasonal allergies.

Amanda's arms are almost healed from Lola's love bites, though she continues to put her hands in Lola's mouth, so another thing to work on.

Meghan is getting really good at singing, she is learning lyrics to most of the songs she loves, and I just love hearing her sing them. Right now she is loving Tangled. Last year, when we were getting ready for Meghan's IEP review, the school speech therapist called me, I was telling her how frustrating it can be when Meghan refuses to use her words to communicate, she told me, if she was not talking well at age 10, she likely never would, well, I am glad to say, she was wrong, Meghan's verbal speech improves every day. Note to professional, be careful about making proclamations like that. Additionally, Meghan F2F speech therapist A did not agree with E, the ST at the school!!

Friday was Julia's 19th birthday; we went to Chicago-not the city, the musical, with Julia, her boyfriend and two of her friends, our son Fred, Meghan, Kara, and Amanda, and we were excited that A, the girls speech therapist, could come with us. Brian was playing Billy Flynn, and we were all excited to see him in another show. The little girls did pretty well the first act, but the second act Amanda began to do her Pilate's legs, she does it when music makes her happy, the man in front of us was not pleased, he turned around and told me "You know some of us are trying to enjoy the show". Tom grabbed Amanda and left, Kara began to get squirmy and wanted to sing along with Razzle Dazzle, so I picked her up and left with her. Meghan stayed with A, and I just hated to leave her, she was unusually shy that night. While we believe that our children deserve the chance to learn to be good audience members, but we do not want to ruin the show for others. Though I admit, I had an Ally Mc Beal moment where I envisioned smacking the arrogant man upside his head. Oh yes, and we knew him, he realized we knew him and blanched, but too late, you blew it sir...I was in tears though, I am so tired of people treating our family this way. The girls were not horridly bad, just mildly annoying. sigh. if you live in Tucson, I hope you can catch the Chicago. The cast is great, and I know Brian would love to see you there.

I am hoping for a quieter week this week, the little girls have one more day of fall break and then we are back to schooling. It has been nice not to have to log on and do the work for a few days.

Sunday, October 2, 2011

B is also for Buddy Walk

SANDS (clickable link) Is hosting the Buddy Walk again this year.

This year our family will host a booth for Reece's Rainbow. We hope to raise money locally and also raise funds for The Voice of Hope Fund for Reece's Rainbow. You can donate to either or both, all funds go towards helping individuals with Down syndrome.

31 for 21 day 2-ABC's of Down syndrome-B=Be in the moment.

Do you ever drop everything and dance with your kids, or belt out a song with them? We do that here all the time during our school day. Meghan loves to sing, and being that she is not a critical person, I sing with her...I dance with Kara, I bounce Amanda on my knee whenever she wants me to, we all live in the moment every single day. It is one very important lesson I learned over the years, to just enjoy life.

Our house does run on a routine, but it is not rigid, though the girls expect things to progress a certain way, and they get discombobulated if we alter it too much, it does not stop them from giggling and dancing with Mom. Breakfast, lunch, and dinner need to be within certain times, and they have to do their schoolwork the time and the same way. Still, I have never seen anyone enjoy every single second of their day like my younger three do. If I put on music, they are up and dancing. If I put on their favorite movie they are smiling and excited, even if they saw it 5 times that week. They are just happy with life. They can also get storm cloud angry just as fast, but children are like that.

Eric and Melissa, it was a beautiful wedding. We welcomed a new daughter to our family, and a new granddaughter Megan.

Meghan dancing at her brothers Eric's wedding.

Kara on the dance floor with the streaker, little guy kept taking off his clothes LOL

Lola running at me, she is FAST.

Lola stalking the poor cat

We got a new puppy, she is a Lab and loves to nip and chase the girls, especially Amanda. Kara and Meghan just walk away from the puppy, and they are left pretty much alone. Now you or I, we would just stay away from a nippy puppy, but Amanda, she sees the dog and gets happy and tries to play with her. Someone needs to tell Lola in dog language that Amanda is not another puppy and does not have fur like her that protects against puppy teeth...Lola is learning, she is only 2 months old. The dozens of chew toys only distract Lola for so long. The Kong toys are helping, Lola spends a bit of time in doggy time out.

Unhappy Amanda, she wanted out, but kept sitting in the middle of a busy dance floor. If you click on the picture, you can see the scratches from puppy teeth.

Saturday, October 1, 2011

31 for 21 day 1-ABC's of Down Syndrome-A

A is for acceptance, advocacy, adoration, adoption, and of course the other A word which I will save for another day.

We are birth parents to almost 11 year old Meghan (and Fred, Terry, Eric, Brian, and Julia...) Funny, most people assume we adopted Meghan because we are older. Ya know ancient, in our early 50's, yikes. I hate hearing "Are you their grnadmother". OUCH

We did not have a prenatal diagnosis, we did not seek one. We had 5 children born without any issues, so why should our 6th have any? Except somewhere in those seconds during her earliest cell division, her 21st chromosome got sticky and made 3 copies instead of 2. So in that 11th week of pregnancy when I got the surprise announcement that I was expecting, Meghan was already a baby with trisomy 21.

When Meghan was born and it was obvious to everyone from her facial features, hypotonia, and heart murmur, that she probably had Down syndrome, with her birth we learned the first A word. ACCEPTANCE.

For some parents acceptance takes a long time. It is not because we do not love our child, though I am sure there are cases where families simply cannot, not in the enduring way a parent loves their children, and those parents give their babies up.

We accepted and loved Meghan on sight, but I felt very sad and guilty about her being born with a condition that would mean the world (which is cruel enough for most of us anyway) would not accept her as a human deserving their respect or even their notice.

I think it took me a few weeks to stop wallowing in sadness and to finally stand up for my daughter, the end of the month she was born, when the doctors in the teaching hospital wanted to use her for their very own Down syndrome specimen, AKA lab rat. Cruel in their study of my daughter to the point of dehumanizing her. There was where the second A word came into play: ADVOCACY.

I simply put a stop to their very unkind scientific explorations. Test her for this, oh gosh, lets do this invasive test on her, how about this about no. I told them, that was it, no more testing, we were stopping all the nonsense of trying to find abnormalities, if she presented with specific health issues, we would test, but not until then, period.

Being Meghan's advocate was and still is a full time job X3, besides caring for her like any mom would a tiny newborn, with cuddling, rocking, numerous diaper changes, and sore nipples from breast feeding. I called (being a stay at home mom at the time, my husband had a FT job) the agency to come here and determine she did indeed have a disability that allowed her to be served under DES/DDD. Next came the services coordinator Maria, and then the therapists, OT and PT at first. I did all the paperwork, was here for the home visits, was therapy Mom and I watched Meghan change and grow and learn with feisty determination. Which brings me to the next word ADORATION.

Meghan had such a strong spirit, she was funny, loved to be in the middle of everything our family did, and she loved us all so much. My love for her grew to adoration. ( Truth is, I adore all of my children)

Cancer entered our lives when Meghan was 2 years old. It was bad, I do not recommend a cancer journey to anyone...but I am always grateful for the miracle of my continued life. I can vividly remember praying the day I found out, "Please God, I cannot leave Meghan behind" for though the thought of leaving any of my family behind crushed me, I knew she may need me the rest of her life, but my other children would build lives away from me, with spouses and their own children. Meghan could have some of those things, maybe, she was so young, it was impossible to tell, but she would not be able to without some support from me, her advocate and her mother.

Years ticked by further separating me from the diagnosis, tests showed I remained NED. I was back working for a new fitness center after being dismissed from my job of 17 years for leaving too often for surgeries. I had a sense of "Now what will I do with my life?"

Then I learned something heartbreaking; there were countries that sentenced their citizens with Down syndrome to institutions for life. I found Reece's Rainbow in July of 2006. I do not think I stopped crying about those haunted faces for months, going back to the site again and again, and then the ton of bricks hit me. That brings us to our final A word for today ADOPTION.

Yes, the first time I saw the toddlers, I cried, I looked at Meghan and then back at them, and just cried. Deep down I knew, if people in America could get away with such inhumane treatment, they would do exactly the same thing, and we have before, while we should protect "The least among us" we often fail one another. The thought of adoption just did not occur to me, we are ordinary people making a modest living. Rich folks adopt, right, people who are childless adopt, but not people with 6 children of their own, do they?

So enter the ton of bricks, and my very own "Wait, maybe we CAN adopt too" moment. It was quickly followed by paralyzing fear. $?$?$? what about the money, who has that much money? I looked at the paperwork needed, a very long list of things-get a passport...clearances from police agencies (Would that speeding ticket I got in 2002 count against me?) I kept thinking that every journey begins with a single step, so just take the step, do it, just do it. Finally after a lot of soul searching I got the courage to send that first email asking about Eve. She was in Eastern Europe, and one of maybe 12 children, RR was new then. I got a message back, Eve was likely Evan, so I searched again and found a bright, happy girl with sparkling eyes who had a committed family the weeks before, but no longer did. What about her then? After all that I had to do the second hardest thing, I had to tell my husband what was in my heart...Thus began our adoption adventure!

We did not adopt the first girl we gave our hearts away to, nor the second, instead we brought Kara home on a blind referral. Silly sweet, wonderful Kara, and 5 months later, our equally sweet and very wonderful Amanda came home too.

So the answer then was yes; parents who are not really young, and have 6 children can adopt, speeding tickets do not count..and sometimes miracles happen.

Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video