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 one...how 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.

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.