31 for21- day 5-too many cats

Thor, Queenie, Hobbs, and Nightmare, Queenie and Hobbs found a home months ago. Nightmare and Thor did not, no one wants black cats. They are always the cats we love the best too.

My girls, all 4 of them, love cats, and this spring-summer we had a population explosion (no I will not tell you how many). My poor husband and sons are allergic to them, so we keep them outside as much as we can. The kittens sleep in the bathroom at night, complete with litter box, water, and a soft bed to sleep in. Two kittens are sleeping there now.

We have found homes and new places for most of our cats, from foster care, to a feed store that sells them, to real homes. We decided to keep the cats the girls liked the most. In the last two week two of our favorite cats have disappeared, one was very tiny with obvious cognitive issues and the other was physically disabled. Squirt never came home, Thor has been gone a day. He never strayed from home and since he is a black cat and it is October, well, I do not feel odds are in our favor that he will come home alive.

I called Animal Control, Humane Society, and looked on lost and found lists, nothing. I will check tomorrow and call veterinarians.

Meghan has been asking about them all day today, mommy has shed some tears. All of our other cats are quiet and seem sad today, I think they know what happened to Thor...they already seemed upset that we gave two kittens away on Sunday.

All of us feel badly about Thor Buddy, the name mommy called him. So no posts about my littlest girls tonight, mommy is just too sad to think of anything to write.

31 for 21- Day 4-Down Syndrome Pregnancy

If you read our blog, you already know, we did not have a prenatal diagnosis. However many of my good friends did, and I would bet this guide would have been amazing for them during their pregnancies.

http://downsyndromepregnancy.org/

I have downloaded it myself, I continue to read about thoughts and feelings of others parents who also have children with 47 21st chromosomes. I love reading about other families and seeing their children's pictures, hearing about their challenges and milestones. I never grow tired of it.

I admire parents who bravely face all opposition and continue their pregnancies. I know that they usually have less people applauding their decision than those who support them. It is so sad that this happens, but it is human nature to reject the unfamiliar. I also believe that the people in opposition put themselves in our place and know they could never parent our children.

I know we had a flood of negative and ignorant comments following Meghan's birth. I remember some of them, others, I ignored, considering the source of the statement, rude people are usually rude about all aspects of life. I also saved every note, email, and letter that welcomed Meghan with love and acceptance. Those people did not know how much their support meant to us at during those raw first weeks.

It was not an easy transition, it was painful, it was scary, we did grieve the loss of the "perfect" baby girl we thought we were going to have. By the end of December my tears stopped (for the most part) and I had begun to accept my (our) new normal, I got the courage to explore what that life may be like. I finally bought books about Down syndrome and read them from cover to cover. I joined online groups, specifically:


Downsheart http://groups.yahoo.com/group/Downs-Heart/

And UpsNDowns http://health.groups.yahoo.com/group/UpsNDowns/

In Downsheart I learned about AV Canal and Tetrology of Fallot, two of the most common heart defects for babies with Down syndrome. Meghan's heart issues, ASD, VSD, and PDA were minor by comparison, but still a cause for worry for our family.



Learn about heart defects HERE

UpsNDowns is a group of parents with mostly school aged children. From that group a few new moms like myself formed our own tiny support group. I continue to talk to two of those moms to this day. UpsNDowns was also the group I was visiting when I learned about Down syndrome adoption in 2006 . I visited Reece's Rainbow after reading an email. Reece's Rainbow led us to adopt two pretty amazing little girls.

My fervent wish for families who feel they cannot parent a child with Down syndrome is to consider adoption rather than termination. There are hundreds of families who are waiting with aching arms to love and raise babies with Down syndrome. By choosing to give your baby life, you are giving them a family who is prepared to handle medical issues, early intervention (portage), special education, IEP's, and challenges that come with parenting a child who learns a little differently. Families like ours.

Adopting Kara and Amanda after Meghan entered our lives is such a tremendous gift, they are challenges for certain; as I type Amanda is YELLING at the top of her voice, something new for her, she is "talking". However, I remember 4 boys who did the same thing, in unison, and often, so small children are small children, and sometimes they get rowdy!

Just had to share-adorable video

31 for 21- day 3- Meghan Changed our Lives

How did having Meghan change me? You know I cannot even remember who I was before she was born, I have a vague recollection of that person, I know she was thinner, more fit, had more time to pursue hobbies and spend time eating lunch with friends...I think she spent too much time thinking of frivolous things (clothing, hair, the latest gossip) and did not take time to have many deep thoughts or conversations. She liked watching Oprah and Regis and Kelly and Entertainment Tonight, (shows I do not watch now)

How did she change our family? Having her made our lives slow down, since she was fragile at first, we could not just take her everywhere we used to go, unless she was going to a doctors appointment, she was home with me. My maternity leave was extended from 5 weeks to almost 2 1/2 months, I had to give up one job because they would not hold the classes for me any longer and would not allow Meghan to come into the classes with me, and my primary job was in jeopardy. My job as a fitness instructor used to define who I was, I was proud of what I had achieved, but even before Meghan was born, the bloom was fading on that rose. Having Meghan put my working life into perspective, it was a job, it helped us pay bills, but it no longer defined me, I was more than just a group fitness leader.

Our son Eric volunteered to drop some college courses and stay home with Meghan so I could return to work, financially it was a necessity, co-pays for all of Meghan's doctor visits were eating into our income. He was so good with her, and I felt safe leaving her with him. Meghan did not get released to be around people other than family until she was 5 months old, I was allowed to take her into my classes with me, but she was still excluded from day care, as children were/are germ carriers.

Tom was determined to come to all of Meghan's Dr appointments, at first the principal of his school was understanding, but after time went on and Meghan still needed lots of medical supervision, she no longer supported his days off and tried to forbid him to go. She began to look for reasons to find fault in his work, typical of a supervisor who wants to be rid of an employee. It became adversarial and he decided to find a new school to work for, it was hard to get later times for appointments because those filled up first, but we did the best we could. He ended up finding a new position, but I know he was happier with the younger students, and teaching middle school is always a challenge.

We are private people, in fact, besides holidays; people did not come here to visit us. We had children playing with ours of course, but my adult friends did not frequent our home, I had a social job for 25 years, having to interact with hundred's of people every day, and when I was home, I wanted it to be a haven, a place to de-stress and renew, I wanted solitude. Obviously the same held true for Tom, being with all those kids all day, peace and quiet was something he craved. Having Meghan literally forced us out of that comfort zone; We had to allow several people a week into our home weekly to get her the help she needed.
I think I am more patient with people who do things more slowly, from small children to an elderly person walking with a walker. I am more aware of people with disabilities in stores and events, I seek them out and make a point to say hello and to smile at them, I used to look away I am ashamed to say, never feeling quite comfortable, not wanting to say the wrong thing.

Socially we suffered some losses, friends we had known for years were devastated by her birth, we had to comfort them, obviously they were the ones who could not handle Meghan's extra chromosome, one by one they drifted out of our lives, it was not immediate, and it took a year or two. It hurt, it was confusing, but it was difficult to keep someone in your life that is uncomfortable around your baby. Some family seemed to drift away too, in fact, most people in our family have never met Meghan; Aunt's, Uncle's, my sisters and brothers (I have half siblings and a few never really have been involved in my life, especially since Mom and Dad died, some were hers and some were his, mostly Dad's kids ignore me LOL)...and we learned that there were reasons for every change in life, and it was time for us to find new friends to share our lives with.

Luckily we found other parents who also had children with Down syndrome, and we found support from them and they loved Meghan for who she was. The Down Syndrome Connection of Tucson was a lifeline for me, thank goodness for Kathy and her support, and for the parents who helped me through the first year (s).

I have found that it is not the person with Trisomy 21 that has issues getting by in this world, but the society into which they are born who creates the problems, the roadblocks. The misconceptions about who they are and what they can do are numerous. It is hurtful that some people are afraid of them, truly, what is so scary about a person with Ds? However Meghan was such a happy little toddler and she never even noticed how people reacted to her presence. Truly she had the most amazing laugh and her smile made the sun shine again. She loved us unconditionally, she adored her big brothers, you could tell she wanted to be like her big sister, and she changed every single one of us just by being born into our family.

When Meghan was a baby, I sometimes looked at her and saw Down syndrome; it took a while to see her as just Meghan. It was a thought that would go through my head; “She has Down syndrome” maybe a way to adjust, get used to the reality. She was just a baby like any other, she needed to be fed, changed, bathed, cuddled and loved. And Meghan adored us, every single family member shared in her adoration. She made all of us laugh with her antics, and all of us wanted to protect her.

So I learned that despite some differences, my girls are just children. Now I have three girls who have Trisomy 21, I can truly say that their behavior, besides some quirks, is exactly the same as children with 46 chromosomes. They get jealous, sad, and mad, feel pain, feel embarrassment, resentment, and every emotion everyone else has. Before Meghan came into our lives, I would not have known that, so she taught me, they all three taught me, that people are just people, despite minor differences in shape, size, color, cognitive ability, we are all members of the human race.

31 for 21-Day 2 _Having Meghan, changed our lives for the better

So sorry for the belly shot, gotta love stretch marks huh? I was at home waiting for Tom to get ready to take me to the Birth and Women's Center to have our new daughter.

Before we had Meghan we were just a regular family, all of us relatively happy, no major health issues, just working, living, existing, challenges were there, but were not major ones. We were always on the go, always doing something, Tom or I were always taking one of our kids somewhere, the perpetual mom and pop taxi. I was working a lot, I had two different jobs when I was pregnant, fully intending on returning to both after Meghan was born. Tom was teaching in a school that he enjoyed, the children were sweet, they loved him. Everyone we knew was happy about our newest addition, they gave us baby showers and eagerly awaited her arrival. We got teased about not knowing what causes pregnancy, we got teased about our ages, but no one openly expressed concern in our social circle about their fears that we would have anything but a typical child, no one seemed to be worried except for me, because of dreams I had that as soon as Meghan was born, our lives would change forever.

A question we get all the time, did we know beforehand that Meghan had Down syndrome, and the answer is no, but we knew at my age, 41 at her birth (my birthday is in November) there was a risk. Despite the risk for Down syndrome, we refused amniocentesis, because we knew the test was not about knowing she had T-21 so we could be prepared to parent her, but instead was done to cover the OB's butts (malpractice) and to give the parents the choice of terminating the pregnancy. I will concede that there are a handful of OB's who truly want to help parents prepare, but I have spoken to hundreds of moms with prenatal diagnosis, and those doctors are seemingly rare. We opted for ultrasound monitoring instead, sure they miss things, but they are not invasive and are not likely to cause a miscarriage. We were not going to risk our infants life, and we were eagerly awaiting her arrival.

Even though my water broke (up high, just a trickle), my labor was slow to progress, so true to natural childbirth, they had us walk, we walked and walked, we came back to be checked, still at 3 cm, so they said go ahead and get lunch and come back a little later, I have back labor, I always have, due backward tipped uterus according to my doctors, so going for lunch was a bit of a painful experience. Back labor often makes a woman feel like her labor is further along than it truly is.

We went to Village Inn, I got my favorite sandwich, the Avocado Swiss Chicken, and we shared a piece of Key Lime Pie. Yes, when you have a baby with midwives, they actually let you eat during labor, compared to my first three children with obstetricians who had strict rules against it, who gave enemas, and shaved, well, you know, all so terrible, torturous, and sadistic...LOL. I hated giving birth in hospitals in the late 70's and early 80's. Hence midwifery for the last three by birth children! Oh yes, I know, the prohibition against eating is in case of complications and the need for a Cesarean Section, always wanting to cut us open those OB's (joking) The midwives felt my birth was hours away, but giving birth is hard work and having food to keep me strong was not a bad idea.

We got back to the birth center a few hours later, we actually went shopping at Toy's R Us too, and still no change, my labor progressed so slowly, likely because it had been 8 years since I had a baby, so the fast labor a woman could expect from having 5 children previously did not happen for me. We walked for most of the day, from 10AM until about 6 PM, of course stopping for lunch along the way, we definitely got in our exercise that day.

They gave me some black cohosh around 5 PM to speed labor along, talks of going to the hospital to have Meghan were beginning, since the water broke early that morning, infection was a concern, but her heart rate stayed constant and strong so they let me stay where I was. Even though I had some amniotic fluid leaking, the amniotic sac had not burst completely and doing that around 7 PM made labor progress at breakneck speed, if you have had back labor, you know how much fun it can be, midwives do not give epidurals or other pain relievers unless you give birth in the hospital, which we did not, so no drugs for mommy. Dilation went from 3 to 10 in two hours. I was relieved to get to the pushing stage. I am sure most moms understand that!

Meghan was born at 9:02 in the evening, after lots of slipping and sliding in a jacuzzi bathtub, I managed to help her come into the world. Tom helped with her birth, getting her shoulders out and holding her as she slid free. They placed her on my belly and I looked into her face and thought "Oh my God, she has Down syndrome" I knew immediately. Lots of thoughts raced through my head, "What will happen to our lives?" ,"How will people treat her?", "Will she ever read or write?", followed quickly with a prayer; "Please God, do not let anyone hurt her because she is different". All those thoughts were in the millisecond it took me to comprehend that her face did not resemble her siblings at birth, and it was clear she had Ds, crystal clear, I never had a doubt. I looked at her palms, saw that single crease on one, looked about the room, did anyone else see what I was seeing? I handed her to Tom and in that unspoken language of people married a long time, he read my face, looked at hers and he knew too.

Meghan after her birth, despite all that going on in my mind, I loved her instantly, and my mama bear protective impulses kicked into high gear, no one had better ever try to hurt my daughter.

Meghan's birth story is on the pages section of this blog. I wanted to share a bit about it here, but what I really want to talk about is how Meghan changed our family...for the better.

When she was an infant and growing slowly, having issues with her trachea, her heart defects and some pulmonary hypertension ( minor compared to some children with Ds, a tiny VSD, bit larger ASD and a PDA) it seemed like all we did was take her to doctors appointments, because of her trachealmalacia she had her immunizations done on the expedited schedule. instead of 2,4, and 6 months, they were given to her at 1,2 and 3 months. I wish we had not been so hasty and thoughtless about that, her poor immune system could not handle it and I believe it is part of the reason she developed an autoimmune disorder; alopecia aereata. Though it is sad to see her lose her hair over and over again, at least it is not life threatening and for that we are grateful.

Meghan had major hair loss on her right side but it is filing in, it is now falling out on the left again, and it goes on and on. She is also completely hairless except for the hair on her head, eyelashes and eyebrows, both of which have also fallen completely out along with her hair.

When Meghan was a tiny baby, we kept our hands washed all the time, they were dry and cracked because as soon as we applied lotion, we had to wash them again. No one who was sick was allowed in our home, Meghan was not allowed in day care, her trachealmalacia would worsen if she caught a cold. It could kill her if she got sick, we had to be very careful. Her stridor was so bad she terrified interns. We got tired of telling them she always had audible breathing. We took her to a teaching hospital and never seemed to see the same pediatrician twice, they also treated her like a lab experiment, bringing in doctors to check out her palmar crease or her epicanthal folds, it was making me angry.

I complained at home about my displeasure about the conduct of Meghan's team of doctors, my children heard most of it, as Tom was working. Julia came to an appointment with us because she thought we were off having fun without her... while they were busy checking the back of Meghan's head Julia said "She's not a lab rat you know" and told them loudly: "And her name is MEGHAN". Obviously I was complaining more than I realized, and Julia set them straight. I was still feeling emotionally raw at that point, and more timid than I normally was, even though they meant no harm, their behavior was insensitive, Julia saw what mommy was talking about and bless her heart, she wanted to pout a stop to it. I was happy to leave their practice and take Meghan to our primary care doctor, who was so much more positive and loving towards Meghan.

Meghan was and is a very determined little girl, she had to be just to get her little body to move, we had to teach her body to hold up her head, to rollover, sit, crawl, stand. Once she began to walk, her gross motor skills got better and better. Her overall development was different, slower, from her 46 chromosome-d siblings. Seeing her try and try again made me admire her gumption, no one could call her a quitter.

We also welcomed (usually with happiness, sometimes not) many early intervention therapists into our home. We joked that Meghan was the easiest child of our 6 because we had so many people helping us with her. We rarely had help in our other children's early years from family or friends, and having so much support with Meghan was a revelation for us. I could see that it was easier for my friends to have parents to fall back on to help with their kids, mine were gone and Tom's were too far away.

It was a gift but it also felt intrusive at times, the crux of therapy in the home is simply having people there several times a week who are not related to you in any way, there are clashes and uncomfortable moments. Some are ultra-professional and goal oriented and forget the child involved would not adhere to their rigid schedule, others were more open and caring in their approach. Finding people who are aligned with your parenting style can be a challenge too. I have never been able to abide therapists who try to force a child to comply. Want to see the definition of stubborn, try to force Meghan to do something, it is not pretty and the tantrums she can throw if you push tooo hard are explosive.

Meghan has had therapy since she was 4 months old, we took a break when I was getting chemotherapy and I was just too worn out to have them come in our home. Only one person has been with Meghan from the beginning, her speech therapist, who came when Meghan was nearly 2. There have been others who came, clashed and left, mostly OT's, who for some reason Meghan does not like, and who have been the most unbending and unreasonable of all the therapists we have had in our home. We are lucky to finally have one who can "go with the flow" with all three girls while stilll accomplishing her goals. You cannot be rigid when working with our trio. LOL

Learning to navigate with DDD personnel and services; Division of Developmental Disabilities and all the different people they have assigned to us as service coordinators has been a constant challenge. Some have been extraordinary and wonderful, some have been simply terrible. Thankfully we have someone wonderful now. I will talk about that on another day, as the state budget and how it affects services and attitudes of Arizona taxpayers deserves it's own post!

Suffice to say, all of us get PH D's in Down syndrome by the time our children enter school. If we did not know what to do when our children are born, we learn along the way, usually with help of parents who have older children, sometimes by making mistakes, but we emerge years later as completely different people than who were were when we first heard our child had Down syndrome.

How did having Meghan change me? You know I cannot even remember who I was before she was born, I have a vague recollection of that person, I know she was thinner, more fit, had more time to pursue hobbies and spend time eating lunch with friends...I think she spent too much time thinking of frivolous things (clothing, hair, the latest gossip) and did not take time to have many deep thoughts or conversations. She liked watching Oprah and Regis and Kelly, (two shows I can barely stand now). She never thought she could be strong enough to adopt either...who was that girl?

Will conclude this tomorrow.

31 for 21 - day one, the value of a person

Yesterday all three little gals had a dental check-up. Kara and Amanda always do OK at doctor visits, I think they were taught to behave for such things at their orphanages, or else...both of them are pretty good patients, it is uncanny, and kind of makes me sad. A little orneriness is good. (wink)

Kara climbed up on the chair and cooperated for the most part. Amanda kept pushing the tools out of her mouth with her very agile tongue LOL, but our Meghan, well, she seems to believe that freaking out and being uncooperative is the best way to get an exam. We told her numerous times, if she would just sit there and let them look, it would be easier for her and then everyone else. After we got home she repeatedly held her mouth open to show us how good she can be. She was embarrassed about her behavior, and that is a good sign, maybe next time will be better?

The exam went the way it usually does, Kara's teeth were perfect, Amanda was good too, no visible cavities with either (most of her baby teeth are already covered in crowns), but Meghan had 3 baby teeth (that had sealants on them), with cavities in between the teeth. They want to sedate her and work on those three teeth in January, the closest appointment. My heart was already pounding at the thought of anesthesia for Meghan again. Tom and I were both afraid of that, she has been awful about us helping with her brushing lately and she also seems to have inherited the bad tooth gene from Tom and I. Yes, there is such a thing, Amelogenesis Imperfecta. I was told that mine was represented by very thin enamel and soft teeth. http://ghr.nlm.nih.gov/gene/ENAM What a great thing to pass on to your kids huh?

We take the girls to a pediatric dentist, he is good, his office staff is also very good. We are lucky to have great dental insurance for the girls, a primary which pays for most of their work and a secondary that pays for everything else. No out of pocket expenses for the little girls. High insurance premiums, yep. LOL.

The office was packed yesterday, children were laughing and playing in the little play area they have built for the kids. A playhouse that includes a fun slide, all but the slide enclosed in Plexiglas. When we came in the children were running in and out of the house, laughing and playing. Meghan got excited seeing everyone and ran to play with them, Kara followed her. Most of the children who were having so much fun left and went to sit with their parents. Two hid in a alcove built into the house, none of them would play with my children. Not one child spoke to them.

At first it did not register, I was watching Meghan slide down the slide and Kara was looking out and smiling at us, Amanda was firmly planted on Tom's lap, she does not do well in noisy places with lots of children. I was focusing on my children, then I realized all the other children had left and whispered to Tom, "where did all the kids go?" he said he noticed it too. I looked around the room and saw one mother actually glaring at me, I was stunned, what was wrong with these parents? Had they all taught their children to fear kids with disabilities? They were acting hatefully towards me and my children. I got mad, I wanted to say something, but did not, my girls were laughing, playing, and having a great time, so I pushed it back in my mind to mull over later.

We fear that which we do not understand.

That is the simple truth of that situation, and for some people, is that trepidation turns to anger as a coping skill, fear is hard to deal with, anger, well, we are better at that one. Could I have used that as a teaching opportunity? I suppose, if I wanted to cause a scene and speak up, sure, but my children notice angry feelings and I wanted them calm for their exams. I do not think the parents sitting in that room wanted a calm and sincere conversation about Down syndrome. I was so relieved when we were called back; at least the dental assistants and office staff are very sweet to us and our children.

I did not think about the behavior of those parents and their children until we got home. I had already been contemplating the reason people fear having children with disabilities, I had been doing extensive reading the night before, and maybe it also made me more aware of others reactions to my family.

The night before the girls appointment, I was reading over topics I wanted to go over in the blog this month, I found this website
http://www.religion-online.org/showarticle.asp?title=2706 and read about termination of pregnancies due to prenatal testing. Something I have tried to reconcile in my heart and mind since Meghan was born and I was asked endlessly "Did you know before she was born" fully meaning "Surely you would have terminated had you known". One of the books they discuss was written by a woman who chose to terminate: Testing Women, Testing the Fetus by Rayna Rapp (click on the link, it is a good article, upsetting to be certain, but eye opening)

The two passages I am sharing upset me the most, it seemed so simplistic, these women seemingly made the decision for purely selfish reasons, surely they were not that cavalier about the lives of their children? You can see very clearly that they talked themselves into their decisions, and it seemed so logical to them, and made so much sense at the time, I wonder how it felt later though? Truly, how should it feel?

These two quotes stood out the most in my mind and heart, while the author read one thing into their words, I read something else entirely.

"Are White Women Selfish?" Rapp analyzes and decodes the language of "selfishness" in the self-descriptions of Anglo women. One woman, who is characteristic of these interviewees, explains, "I just couldn’t do it, couldn’t be that kind of mother who accepts everything, loves her kid no matter what . . . Maybe it’s selfish, I don’t know. But I just didn’t want all those problems in my life." Rather than considering the possibility that such narrations reflect genuine conflict over the question of selective abortion, Rapp suggests that these women are unwitting victims of both pro-life propaganda and an atavistic ambivalence about the entry of women into the workplace.

We did not have a prenatal diagnosis, I was an AMA (if you were one, you know what it means) and they wanted me to do ALL THE TESTS, and I refused. As an AMA, I felt my pregnancy was a gift and there was nothing I was going to do to threaten my baby's life. I had 4 ultrasounds, routine blood tests, and saw the midwives every three weeks, but I did not do the AFP, and I certainly refused the amniocentesis they insisted on. I was prepared to be "One of those kind of mothers, who loves her baby, no matter what". I cannot understand anything else, it is who I am, I loved my children when I carried them in my womb and I loved my littlest girls as I carried them in my heart.

I had always been shocked when a person of faith chooses termination, how could they, when they believe all life is sacred? This next persons POV opened my eyes to the hows, but I still cannot understand their whys. So another quote from Ms Rapp's book:

People of faith are already interpreting such choices theologically, and their language begs for engagement. Carefully distinguishing the termination of a planned pregnancy from the abortions of "other" women, Christians are seeking theological justification for their decisions to terminate disabled fetuses. One woman explains that her pregnancy "interruption" was providential, another that God was testing her to see if she would be willing to return his angel to heaven. In a desperate attempt to bridge choice and faith, many who choose to "interrupt" their pregnancies (the common phrase in these cases) embrace the idea of the transmigration of souls, expecting that the terminated fetus will return in a subsequent pregnancy, wearing a new, improved body.

While I saw the first woman as being very self involved and scared of change, the second passage upset me. You see, when I look at my children, I see perfection. ALL of my children, not just those lucky enough to be born into a body with 46 chromosomes. My girls with 47 are beautiful, striking eyes, adorable smiles, impish grins, loving souls (most of the time *G*) and more than anything, they are just children.

Why do we fear having a child with Down syndrome so much in this world? Why did people call with their condolences with Meghan came into our lives? Why did I have to help so many people in my social circle see, really see, her humanity? Why did it take so long for a woman in my Silver Sneakers class to say; "You know, she is just a baby" quickly followed by "When I heard about her being born, I expected some gross deformity, everyone was so sad, but she just looks like any other baby with some minor differences. If anything she is funnier and more aware than most babies I have seen". (Meghan could not go to day care because of trachealmalacia, so I was allowed to bring her in her infant carrier into my fitness classes while I taught, she stayed with me in the class for a few months). It is not a surprise to moms who have children with Down syndrome that those 35 people grew to love and accept my Meghan? Because they most certainly did! In their time babies born with disabilities were hidden away in their homes or given to mental institutions, sometimes forcefully taken "for the good of the community", most had never seen a child with cognitive delays. Who said older folks cannot learn, then most certainly can and do. Meghan taught them!

Yesterday I saw this post on Facebook, and I copied it:

In the book, a deposed pope has gone through many trials and tribulations and it is the time of the Second Coming. When he meets the Returned Christ, the former pope is afraid and unsure much like the apostles when Christ first arose. This passage takes place in a mountain hideaway where children from a school for Down Syndrome are among those present. The Returned Christ is speaking about one of these children as he holds her.

"I know what you are thinking. You need a sign. What better one could I give but to make this little one whole and new? I could do it; but I will not. I am the Lord and not a conjurer. I gave this mite a gift I denied to all of you--eternal innocence. To you she looks imperfect--but to me she is flawless, like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done. She will never pervert or destroy the work of my Father's hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune... More! She will remind you every day that I am who I am, that my ways are not yours, and that the smallest dust mite whirled in the darkest spaces does not fall out of my hand... I have chosen you. You have not chosen me. This little one is my sign to you. Treasure her!"

I do not agree with everything this passage says, I do not see Meghan, Kara or Amanda as unopened rosebuds, instead they are fully bloomed roses complete with the thorns, imperfect as all humans are. I do not idealize their humanity as more than others nor do I see them as less than anyone else. My daughters are more like other children than unlike them, but they do have an innocence, a sense of wonder that we walking around with 46 chromosomes lose before adulthood, and such a shame too, as everything to a child is miraculous, and so many adults who happen to have Down syndrome see the miracles every day of their lives, most of us miss them. They take the time to, while we rush about like mad fools, chasing the brass ring, looking for something to own, something to help us gain status, looking to be wealthy, and adults ( I speak only of those I have known personally) with Down syndrome I know just want to show their love and have a strong desire for people to just SEE them as another person in this world, to speak to them and really take time to LISTEN to what they have to say. Why do we always notice differences in one another and why do we believe that those difference mean more than any other aspect of our humanity?

I would love to see less of the behavior and attitudes I saw yesterday in that dentists office, that is my most fervent wish.

Almost time! 31 for 21

Grab This Button

It will be great to have a reason and purpose to post here, I get busy and my posts get so long, I am the classic rambling writer. I also have to get the posts done after the girls are in bed or before they wake up, and that is not always possible either.

I am hoping I can actually do all 31 days, we'll see!