31 for 21-10-10-10- Living in the now

I spend so much time looking for information about Down syndrome, reading some of it incenses me, and that makes some posts long and I think overly negative. I have two unpublished posts for this challenge, both are about issues that make me angry, and I got lost writing them, I may go back and edit them when I am not emotionally raw. Maybe post later on, I don't know right now.

The one abiding truth for me and my daughters with Down syndrome is that we love each other. Sure they can get into everything, they can have behaviors that drive me bonkers, and mommy can be having a bad day and be grumpy herself, but all I have to do is sit down on the floor and 3 adorable girls are on top of me hugging me and kissing my cheek, smiling, laughing. As I sit there holding my daughters, I feel like the luckiest person on earth.

Yes my typical children loved to sit with me too when they were tiny tots, but they always had their minds on the next thing they wanted to do, they were busy, they moved fast, so with them it was "Here mom, take a hug, can I go now?" We love one another too, and I am so lucky to have them in my life, but their minds were in the future, the little gals live in the now.

This is just one of the many things I love about my little girls.

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.

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.

Oh no, Manda Moo's first injury

We leave the sliding door propped open during the day, the little girls love playing outside, but truth is, our yard is not very kid friendly, we have some atrocious cement that is rough on tender feet and knees. Something we always wanted to get fixed, but never have due to the huge cost of tearing it up and getting a load of cement to pour, and men to make sure it is level and such... My idea is to get interlocking foam mats and place them all over the patio, that way my little girls will be more comfortable and much safer.
We will likely go to Home Depot and get a package at a time until we have enough.

So today after lunch, the little girls went outside to play a little, Amanda was singing to me, so I went out and she was sitting at the swing, her way of asking to be put up on it. I put her up and Kara soon joined her, I could hear them playing while I washed out the bibs and bowls. (Our kitchen opens into the back yard, so they were right beside me really)

I heard the swing begin to squeak and knew Meghan had joined the girls, I heard laughing and went outside to see them all hanging out. Of course I had to get my daughters camera, I still have not replaced mine, I feel so lost without it, I am sure other moms understand that, especially if you love taking pictures like I do.

As soon as I clicked the first two pictures, Amanda was trying to get down and Kara was struggling to get to me, she loves to see herself on the camera, something left over from our days in Ukraine.

Of course big sis was having none of that, and attempted in her kid way to restrain them, and of course mommy had to get her to let go, talk about a choke grip. LOL

Well, Kara got away and sat by me, but Meghan pulled a reluctant Amanda right back up with her and held on. Meghan adores Manda Moo and is always wanting to hold her.

Amanda though, got Meghan's hand off of her and tried to climb off the swing head first, at the same time Meghan stood up an Manda fell, head down on the cement.

She landed on the side of her head and her cheek, her mouth bled a little too. She cried for 15 minutes while mommy held a cool clean cloth on her head and face. Here she is after she stopped crying, you can see her pink left cheek and he red puffy eyes. (right in the picture), poor baby, she was so sad. This happened in seconds and I tried to get to my little baby and grab her, but I just could not react soon enough.

After Amanda calmed down, both little girls had a bath and had their bangs cut; crooked bangs because they both refused to stay still. LOL I kep Amanda awake all afternoon, keeping an eye on her, she seems fine, but I feel so badly for her.

So, I think we will be getting those mats as soon as possible, no more of this kind of thing.