Transitions, sadness, pain and loss, regaining hope

My late parents, Laquita and Rex

Sometimes life is about loss, and sometimes that loss can immobilize us. Coming out of the pit of despair and looking up at a sunny sky through the back cloud that covered it for so long and feeling hopeful again does not just happen. It takes emotional strength and growth.

Oh April, it is a difficult month for me anyway. It reminds me how easily life can turn on a dime. I just passed my 7 year breast cancer diagnosis anniversary April 15th, or as most of my survivor friends call it, Cancerversary, anniversary is a bad descriptive word for having survived a cancer diagnosis (I always say in my mind, "so far"...). Linguists need to think of a new word to describe each year that ticks on after catastrophic illness attempts to take your life! On one hand I celebrate those 7 glorious years, the tremendous gratitude I feel when I wake up, still living, breathing and loving, the wonder of living life never goes away completely. I say a little prayer of thanks every single day.

When I was in the hospital in 2003 a very good friend at the time was losing her father to congestive heart failure, he had been ill for a long time. He died the same day I had a mastectomy, at the same hospital. She did not want to visit me, I still remember our mutual friend pushing her through my hospital room door. I was not weeping in sadness over my diagnosis, I was rejoicing that the cancer was gone, I was calm and well, on pain meds, so i was feeling pretty good. I saw the fear on my friends face, then the sorrow, and finally relief, all chasing each other in rapid succession. She said "Well you don't look bad at all". Her father passed away sometime after her visit. I loved my friend, we had been through a lot in the long years we worked together and she was very dear to me, but my having cancer lost her to me, I believe it was the association between myself and her fathers death, I will never know, but she stopped calling, emailing, or visiting. His funeral was a couple of days after I was released from the hospital. I attended it with drainage tubes still inserted into my newly flat chest. I hated to go and pull any attention away from the family, but her friends were also mine and they were scared for me too, and maybe that stung her a little too. Attending a funeral right after being diagnosed with cancer was extremely difficult for me, the days that followed I thought constantly about death and dying and I was depressed. Would that be me in a year? We had just come from my breast surgeons office, he was so sad for me, you could tell he did not think I had much of a chance. He warned me that I could not have any reconstruction for at least a year, just in case my cancer came back.

Still, I survived all the trials of cancer treatment, what many call my Hero's Journey. I did not emerge from it the same person I was before, not in mind, body or spirit, everything for me changed. Friends fell away, my job of 17 years finally came to an end, and it was no ride in the park; new managers every few years, new owners, changes in the fitness world...

I made many new and wonderful friends via an on-line BC support group I inherited. I also lost many of them to breast cancer. A beloved person in my life said to me, "Why do you put yourself through leading a group like that is such a downer, you should quit". This after I told her I lost another beloved BC sister. I told her that each one of those wonderful women supported me in dark days and I tried to do the same for them, in many ways they are like family too. I do not believe that anyone who has not been diagnosed with and survived a life-threatening disease could understand why I feel committed to the women in my support group.

This person however, she should understand, she has been through a lot of trauma and illness in her life. But whereas I reached out for support because I knew I could not survive without it, she withdrew into herself and wallowed in the fear and pain, and in doing so, has become a person I no longer admire or even recognize. She does not know joy, but instead chooses to be bitter and to blame everyone for her misery. I look at her and I wonder, what happened to her heart? I pray she will heal and let her joyous self reemerge, I miss her.

Adversity can shape who we become, I know this to be true, and I am certainly not a perfect person, more a work in progress.

World Down Syndrome Day

Yes, I have been thinking about this day since January, and for some reason, the idea bothered me. You see, we celebrate our girls uniqueness every second of every day. We are a family of 10, 3 of whom have Down syndrome, we belong to numerous groups on-line, the local group here in Tucson, and we have hundreds of friends whose children also have Down syndrome. Having children with trisomy 21 is normal for us, it is our life, they are our daughters, and so, when there is a day set aside to celebrate them, we are scratching our heads. We do not need a day set aside to marvel at being their parents!


OK, so I am likely looking at this wrong, what the day is for is to get others to see how wonderful our children are, but I unless you actually have a person with Down syndrome in your life, you will never know the joy, the challenges, the love, and the frustrations, and the pride when they learn hard earned skills.

You can read about dozens of families, you can see TV specials, and Youtube videos, but you will not live the lives we do.



I do not think people are good at envisioning lives different than their own. You can look in our windows and think that you could never do what we do, that perhaps our lives are more complicated than yours, that we give up too much for our kids, and perhaps you cannot see sacrificing the life you have now for one like ours...the truth is, I do not see my life being much different than it was 20 years ago, being a younger mom with active boys who broke things, fought, were always active (until we got a gaming system anyway). Small children require lots of energy to keep them safe and happy, my daughters require no more than a typical child would. The biggest difference to me is the development of my 3 youngest girls compared to their 5 older siblings.



When I had my first, Fred, he followed the developmental charts like clockwork, in fact he was pretty much spot on for every single milestone. Terry, my second, walked a tad later, talked a lot later, but did everything else "on time". Eric did everything early; crawling at 6 months, walking at 9 months. Brian and Julia were about the same as Fred, though Julia talked before any of her brothers. They all said it was because she was a girl, and girls were always talking, I am sure I do not know what they meant.....


Then we had Meghan, we learned that we could not take the developmental milestones for granted with her, she would actually need to be taught to do most of the things our other children did on their own. The main issue with Meghan's health was a floppy airway (trachealmalacia) GERD, and very low tone (hypotonia) Her floppy airway meant her oxygen saturation was lower than your or mine, in the low 90's, sometimes dipping into the high 80's. This meant she did not have the endurance to be a very active infant. Added to that was hypotonia, which made it difficult for her to learn to hold up her head, roll over, sit up. She had physical therapy from age 4 months. With therapy we helped her muscles get stronger, her nerves to "wake up" and send the message faster to the muscles so that she could do the things she wanted to do, therapy does not "cure" hypotonia, but it does improve it. Meghan was also hypermobile, (very flexible and loose jointed) pretty much goes hand in hand with hypotonia, and we could not pick her up like we did our other children, her joints would pull apart slightly.

Each and every milestone our children met was celebrated, but we all did the happy dance when Meghan finaly mastered hard earned skills. Having her actually showed us how much we took our other children's development for granted and what a miracle having a child with no special needs truly is. We embrace each of our children for the individuals that they are, and all of them are special too.

Happy Saint Patricks Day

I know the day will be lost on my three youngest, in fact, I am certain my husband and Julia forgot completely, no trace of green on either one today! It was always one of my favorite days growing up! I will show the girls a little cartoon about it, I am a wee bit Irish, so Meghan is too, not certain about Amanda and Kara, but I kind of doubt they are LOL.

Today is also Anna's birthday, Terry's girl friend, Happy Birthday Anna. I hear Amanda from her room, the day has officially begun, all the little girls are awake and ready for breakfast!

The girls this week

I tried hard to get one of all three together, they refused to sit by each other, so this is the best I could get! Little stinkers.

Amanda is walking to mommy. She is taking 10 or more steps at a time now. I think I was right, she will be walking by her birthday! The OT said today "I have a feeling she won't just walk, but will run". I agree, Amanda is FAST, and I will also be running to get her, maybe I will lose some weight chasing her too.

Today I set out to get some good pictures of Kara, I can get plenty of Meghan and Amanda, but Kara moves, ducks, turns her head and does not cooperate. So most of these were taken today, some of Meghan and Amanda were taken in the last week or so. I adore Kara's brown eyes, I will forever remember looking into them the first time we saw one another in Vorzel. For me it was love at first sight! Finding her was a miracle for me, for us, we went through hell to adopt in Ukraine, bringing her home was a gift from God.

Put that thing down mommy, I do not like pictures!

Meghan loves her Barbies, she said, "No not my picture, take Barbies!" They both had bad hair days.

Happy Amanda, she has begun to smile for the camera, she adores getting her picture taken most of the time now. She is so dirty here, from playing outside and eating dirt! Ah to be a little kid again. :o)

Had to do my color correction again, even though Amanda's skin looks almost normal again from her carotenemia, when I take her picture with flash, she turns a nice golden yellow. Her skin has trapped the pigment, it will take a while to resolve...especially when she loves carrots, squash and sweet potatoes so much.

Amanda's face looks so round in her pictures, though she is still very tiny and very skinny, despite the pudgy face. We were wondering today if she stopped growing completely, but she has outgrown some clothes and gained 6 pounds, so we know she is growing, she just may stay skinny, wish I were her.

Kara the couch potato, what do do with this little munchkin?

Beautiful Kara! When we adopted Kara I was amazed how tiny she was for a 3 year old, and now, I am amazed at how big she is for a 5 year old, she is growing like a weed! Her bone structure is very large and she is very heavy. She is also chubby, she is so happy to lie down and pretend to read a book. (Time to get get blood work for anemia and hypothyroidism, don't you think?) She is lazier than my sons were in in adolescence.

Kara is a funny little girl, always laughing and happy, but she sees my camera, and her face goes blank, wish I knew why, it is so hard to get a smile from her for a picture.

Cover model! This picture turned out so good, Amanda looks like an angel!

My pretty little Meghan in her leotard, she found this in my old Ebay bins from a couple of years ago when I used to sell new and used children's clothing. She put it on and then grabbed my camera, and told me to take her picture, she posed for a bunch of them, this was my favorite!

Meghan's alopecia is on the rampage again, alopecia is like that, it progresses and regresses with no rhyme or reason. We though we had helped with a gluten free, casein free diet, which has improved her behavior and overall health, but the hair loss, well, it gets depressing for me, but as long as it does not bother her, then I will not let it get me down. What is more upsetting is the way people stare at her, OK, she already has Down syndrome, so people do stare (wish they would try harder to be subtle about it, she is beginning to notice) but to have this hair loss too, well, people are NOT nice sometimes. Her left side has 40% hair loss, and the other day I saw a dime-sized spot on the right which filled in completely, but was totally bald two years ago, so I am not certain what to think, will the right go now and the left grow back like before, or will she finally lose all of her hair?

She has very little body hair, her arms and legs are smooth, she still has most of her eyebrows and eyelashes. Having been hairless myself during cancer treatment, not having lashes means every little thing gets in your eyes, I hope she at least keeps her lashes. She has lost both brows and lashes before.

Just too tuckered out to stay up, these little girls can fall asleep faster than you can blink sometimes. LOL Amanda on the left, Kara on the right. They cannot sit near each other without hair pulling when they are awake, but seek each other out when they are tired, go figure!

Amanda is slowly blooming like a beautiful and rare flower. All of us are amazed at the changes in her personality, every week she opens her heart a little more to love, and she is learning to express her affection without the fear she used to show. today she kissed her OT on the cheek! She still has many repetitive behaviors, grinds her teeth, breathes heavily when she is stressed, she still has autism BUT....she is doing so much better.

Kara and Amanda are too fond of rocking and bouncing. I wonder if they will ever stop? Whenever they hear music the start bouncing off the sofa cushions, they usually do it on beat, completely synchronized! :o)

What is normal? One Chromosome Unites Us

When we had Meghan, people felt compelled to tell us stories about friends and friends of friends, cousins, aunts, uncles, all who had someone with Down syndrome in their lives. I actually loved hearing all of the stories; I was hungry to hear that the children grew into adults who did "normal" things.

We use that word a lot as parents; normal, "Is it normal for her to eat like that, sleep like that?” The opposite of normal of course is abnormal. I cannot think about the word abnormal without thinking of Young Frankenstein; the part where Igor gets a brain for the "monster" and picks the A.B. Normal brain. The doc was rather upset with him, but if you saw the show, you know that brain worked pretty well for Frank, in a round about way. LOL Hmmmmmm.

We joke here that none of us in this family are normal, and we are glad we are not typical of everyone else, how boring. Sometimes it gets us in trouble to be independent thinkers, but I would rather that than the alternative, we do not intend to maintain the status quo, heaven help us, no one should considering the state of our world. We embrace diversity, individuality, and cherish each person in our family for the wonderful person they are. We respect one another, even if we do not always agree with the others POV. I like that word, RESPECT.

This is one of the reasons it is difficult for me, for us, to comprehend the reaction some people have to our youngest family members. Meghan, Kara and Amanda often get mixed reactions when we are out as a family, and I will report to you, that if you are the person who rudely stares, nudges your friends to also stare, and begin to whisper and laugh derisively, then you will get 7 angry scowls from a very protective family. You see, we see you as unkind people with poor manners. As unenlightened people and we pity you for your ignorance. You cannot and will not see that we feel blessed to have our three daughters/sisters in our lives, you just see through your own bigoted eyes.

You believe that my girls are not "normal" children, and that makes you uncomfortable. Your behavior will forever bring to my mind a verse in a song in "Beauty and the Beast" the "Kill the Beast" song. Indeed, I sing this to myself whenever I get rude reactions to my girls (thankfully we usually get very nice people interacting with our family)

We don't like
What we don't understand
In fact it scares us
And this monster is mysterious at least
Bring your guns
Bring your knives
Save your children and your wives
We'll save our village and our lives
We'll kill the Beast!

This is what families do to children diagnosed prenatally with Down syndrome (and other conditions and syndromes), they kill them via abortion, I know you will use the words “terminate the pregnancy”, but folks, it means the same thing, look it up, to terminate somebody means to murder them. I have read your reasoning in blogs and articles for terminations of your pregnancies, some of you have heart wrenching explanations; I have cried tears of sadness and pity for you. I try not to judge, I am not you, but I can't help but think that if doctors, geneticists, and other medical professionals would stop painting such a bleak picture about babies born with Down syndrome, more of the children would have a chance to be welcomed into this world. If the families cannot raise their children there are hundreds of others lined up to do it for them! Adoption should be the choice over a 90% abortion rate.

I have spoken to enough women about their doctors recommendations following prenatal discovery of that extra 21st chromosome to have a pretty good understanding about what the medical community in general believes; that anything that is not normal is BAD. That they need to FIX it, so it will not be ABnormal. How do you fix a baby born with an extra chromosome? You do not, you get rid of them, because it is BEST for the family and the children will be a BURDEN to your other children after you DIE and it is NOT FAIR to them to bring their brother or sister into the world or in our case with no prenatal diagnosis, to being the baby home? I have no respect for a community who would believe this, and it does make me distrust most doctors. How can I entrust my daughters to you when you believe they never should have been born? How can you look into their beautiful faces and not see a whole person?

I believe that the attitude the medical world has empowered hate groups, it justifies their beliefs. They feel warranted in saying my children do not have the right to breathe the same air as they do. I have had the ugly truth hitting me in the face this week. Hate groups of any kind are difficult for me to understand, how can someone embrace that much vitriol in their souls? It takes a tremendous amount of energy to hate something with that much malice, they have to be exhausted, they work so hard at it…

In my heart I feel that people with this mindset are missing something essential in their souls, they cannot respect anyone who is different and they cannot love and accept anyone they see as ABnormal, and they teach their children to abhor anyone different as well, perpetuating a terrible cycle. Their intolerance is the basest of human emotions and it presents itself as a festering boil, suppurating on the skin of civilization.

What do we do to boils, we lance them and let the pus drain away, lest the infection take over and kill it’s host…but how do we teach tolerance and acceptance, how do we help the masses see that our children are always children first, who share more in common with them than they are different? How do we rid the world of it’s infection of bigotry? I am not immune, because I feel great animosity towards those who hate my children.

To those of you who call my children retards, morons, imbeciles, or any of the other words you have twisted into your hate speech I proclaim that I love my daughters, I adore them, I am so proud of them, having Down syndrome it is a small part of who they are, to me and those who love them they are normal, they are perfect, and they have my respect for I know they work hard for everything they learn. They are smart, funny, and wonderful human beings. I thank God for them every day. I feel compassion for you, for not being able to see what I see, to feel what I feel, you are missing one of the universes greatest gifts.

Does anyone truly listen when we advocate for our children?

Yesterday I was part of a huge battle; a battle for the dignity of my three youngest daughters . It took place on Facebook and was waged against a group of teenagers who felt it was extremely witty to ridicule people with Down syndrome and other people with disabilities as well as liberal use of the N word and R word over and over again, some of their posts were depraved, sexual content, pornography, everything a parent would be proud to see I am sure.... They also copied pictures of people with Down syndrome off of every site they could and posted them, making fun of them. It wrenched my heart and offended me.

The problem with Facebook or any other social network is a persons ability to open a new account within minutes. Parents and friends of people insulted reported each racist and bigoted post this group made, and while one group would get shut down, these poor misguided and very hateful children would open another, bragging that no one would stop them from doing what they wanted. However, their identities could not escape the parents of the children they maligned, and they have had to face the consequences of their actions. A lesson we all need to learn I suppose, there is no such thing as anonymity while you are on-line. I do not think for a minute that they will be miraculously healed of their hateful bigoted attitudes. But maybe, just maybe this will make them think...

I went to bed with tears in my eyes, soul weary, just so sad, I am tired of fighting ignorance, hatefulness, bigotry, and stupidity. I want the world to be a fair place with total equality for every human being, I want something the human race is incapable of.

I woke up and believed today will be a better day, and then read about this:
http://www.newsleader.com/article/20100222/NEWS01/2220318

In part it said:
State Delegate Bob Marshall of Manassas says disabled children are God's punishment to women who have aborted their first pregnancy.

He made that statement Thursday at a press conference to oppose state funding for Planned Parenthood.

"The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children," said Marshall, a Republican.

Another slant on the whole "Having this child has to be your fault" belief system, I have to say, their God is not mine, He does not punish anyone, let alone my innocent children. I am not going into the whole abortion issue, which is why he talked about this in the first place, I believe he is making a preposterous statement to get a knee jerk reaction, rather like the children on Facebook yesterday.

Truly, I suppose no one is without sin, I know that when Meghan was born an ill-advised Christian friend said to me;"You must have committed a terrible sin to be cursed with a Down syndrome baby". I was floored and sadly that ended our relationship.

Yes, it is not easy to hear your baby has Down syndrome, though my pain in hearing about my daughter was not that she was born with Down syndrome, it was the sadness knowing she would not be treated like a whole person by the majority of the world, that people would veer away from her and hateful misguided people would try to hurt her. We hurt that which we do not understand.

I look at my youngest three and see whole children, just as HF wanted them. I have never met a perfect child, all of them have different issues and quirks that make them uniquely them, but I think I have begun to live in a bubble, a bubble I created to block out a world that cannot and will not see the beauty my girls possess. I surround myself with friends who also have children with Down syndrome and subconsciously avoid others. The few people I let into my bubble have to love and accept my girls too. The others have the door shut in their face, I have no room in my life for people who carry hatred in their hearts.

How far is too far to protect our children? They have to live in the world too, to be a part of this imperfect and sometimes cruel world, where do we find balance in a imbalanced society? Honestly, I do not have an answer to that question, but I will be praying and dreaming about this for a long time, to try to find a solution that will work best for us.

Will you pray too?

TUSD Superintendent Dr. Fagen to Deliver the "State of the District"-more school budget cuts covered tonight

Tonight, February 15

Superintendent Dr. Fagen to Deliver the "State of the District"
& Chief Financial Officer Bonnie Betz to present 2010-2011 school budget information

This meeting is especially relevant to all TUSD parents, educators, and community members who are interested in knowing the most current information on TUSD's future outlook and the school funding process for next year. The meeting is open to everyone and it is highly recommended that all School Council and SCPC members attend.

When: 6:00 p.m

Where: Catalina Magnet High School Auditorium