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Independence Day - In AWE of the fireworks!

Wholeness of Life

As noted on the MOSAIC website:

"In one study, respondents ranked supporting people with intellectual disabilities as a low priority – even below helping animals."

My dear friend, and creative advertising genius, Marty, created videos found in the above mentioned link in support of an organization that provides persons with intellectual disabilities with much needed help. As they utter in their mission statement:

"In partnership with people who have disabilities, Mosaic provides supports and advocates that all may realize God's gift of wholeness of life."

Indeed, ‘wholeness of life.’ A wholeness that I cannot state that I ‘truly’ experienced until after the birth of our beloved Elliot who proudly sports an extra 21st chromosome. Ironic. I was not whole until he entered my life. He has given me that gift, and sadly, many like him are not able to experience this exact wholeness themselves.

Please spread the word with regard to my friend’s work in support of this campaign. And yes, the video creation is very poignant and I assume was created on a pro bono basis. God bless, Marty! Thank you for working toward serving people with intellectual disabilities.

Am I at fault?

A dear friend posed the question, “What are your areas of weakness in raising a kid with special needs?”

Me? Weaknesses galore. I can certainly admit it. I suppose my primary fault is over-protectiveness. Case in point: Elliot came down with a cold three weeks ago – and when Wee E gets a cold, it is nothing to shake a stick at. But, what do I do? I immediately pull him from school and he’s now been vacant from said classroom for THREE WEEKS. It will invariably turn into an upper respiratory infection or a horrible pneumonia (as it always has in the past) if he is further worn down by 4 hours per day, 5 days per week. We’ve had the therapies in house…we’ve toyed with OT and PT and ST here at home, but really, have accomplished nothing. I spend more time chatting with said therapists (as I rarely have adult interaction) and they leave. So, to school he goes and wow, do they work him! It’s fantastic.

But, fantastic is only fantastic if my fragile boy is healthy. He goes, he becomes sick and he’s out for a month! I have now received the district supervisor call, “Um, Michelle, Elliot has been at school for 10 or so days this last semester…do you want to reinitiate in-home services?”

“Well, no…if Elliot is sick, I really don’t want people in my house anyway!” I only pull him out when he’s sick, or when he has a surgery scheduled and needs to remain healthy prior to the procedure. It has been a really hard winter from a health standpoint.

I don’t think the general public understands just how sick a child with Elliot’s needs becomes with a common cold, with a silly gastrointestinal flu that put him in-house at two hospitals for a MRI and an EEG…vomiting for 8 days solid. After that was said and done, it turned out to 'only' be the flu and his brain (although his brain has other issues) was okay. He weighs 23 pounds. He has a feeding tube to help with an additional diagnosis; he has no gallbladder; his liver has fought fibrosis; his spine has been corrected. And sadly, he cannot speak; he cannot walk and he’s pushing four years of age.

So yes, overprotective. If I cannot speak for Elliot, who will? But, do I take things to the extreme? You bet…and really, I just wish that I could step back and let him enjoy life just a little bit. I wish that I could take Elliot to the grocery store (he has a special affection for the grocery store, although he won’t eat solid food); I wish that I could have accepted the birthday party invitation on his behalf, taken him and let him enjoy the party; I wish that he could realistically be in a school setting 4 hours per day, 5 days per week…

But Elliot, a 32-week preemie…a boy that has undergone multiple surgeries, a boy with little to no immune system, needs to be protected.

So, we’ll alter the IEP. We’ll send dear Elliot to school three days per week and see how he rolls. He is far, far behind from a cognitive standpoint – from a gross motor standpoint, and Wee E needs to be in school – if only for three days. And what will I do? Well, momma bear will worry her little head off each and every day that he is there. I’m trying to find a happy medium.

2010 - thus far...

Happy New Year? Well, I’m trying to look at the bright side of things. But, multiple illnesses have kind of sent me over the edge. My poor blog – not updated since Halloween!

We started the year off with a bang. Sir Isaac took a trip to the ER on New Year’s Eve. He was diagnosed with a bilateral ear infection the previous Wednesday. Prescribed antibiotic produced an allergic reaction and needless to say, according to two ER physicians, he did not have an ear infection…no strep, no Influenza…just a high fever; a silly fever that lasted for three days, sitting around 104. Then, the rash – a horrible rash. He had Roseola – very common, and not very serious unless the fever goes untreated or unless your name is ‘Elliot’ and you really don’t do well fighting viruses. Elliot is currently fever free - for now!

My Nora was in Kansas City for her first dance competition of the year (with my husband and mother, not me, no less) over that particular weekend. I missed the entire thing. She was fabulous I was told, but came home and immediately began vomiting (at school) the following Monday. Three days of puke!

Staph infection also set in – Elliot twice on his new g-tube. Wee E has been on antibiotic for over a month!

Yesterday, Isaac began to vomit. Just in the morning, so that particular symptom bothered me quite a lot. Please vomit all day of you are going to vomit…otherwise, momma will think the worst. Momma knows too much! He’s had episodes of one puke here, one puke there before, so I worry. I do suppose that he is just a child that has a weak tummy, gets car sick, etcetera, but you know me…read between the lines.

This morning – sick husband, lying in bed…not moving with a high fever. I have yet to approach the boy’s bedroom. I’m scared.

Me?

I cannot get sick. I never have been allowed. But today, I will head to the endodontist to have a root canal (gone bad) retreated. Will I complain? Hell no! Will it hurt? Most certainly, yes.

But, as all of the fellow mommas know, our ills are in our head. Never more.

My Happy New Year will commence on February 1. That’s the plan. Does someone want to bring me a bottle to ring it in appropriately?

31 for 21 – Why?

“A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated. Data from the National Down Syndrome Cytogenetic Register in the United Kingdom indicates that from 1989 to 2006 the proportion of women choosing to terminate a pregnancy following prenatal diagnosis of Down syndrome has remained constant at around 92%.”  And the stats, in 2009 thus far, remain consistent.

All life is sacred. The life of an individual whose body contains an extra chromosome on the 21st pair is sacred. Said life may be imposed with a different set of challenges, but sacred nevertheless.

I am not one to judge. The 91-93% of women who choose to terminate have their individual reasons for doing so and possess the individual right as well. But frankly, I think that the termination rate remains high because mothers (and fathers too) are not educated. I use the term “educated” in ambiguous terms though. They may very well be educated in the typical sense, but they do not understand, notwithstanding the challenges, just how very much love and how very much life a person with Down syndrome can possess and bestow upon those around him or her. Otherwise, why terminate?

Our family was made aware of Elliot’s enhancement following his grand entrance into the world at 32-weeks gestation. I had the typical tests. The ultrasounds (many ultrasounds) showed no markers. My obstetrician still to this day indicates that he did not see the traits even upon birth. Elliot was whisked away so exceedingly quickly to the NICU across town. The neonatologist made the call; the call which changed our lives; the call which changed our lives for the better.

I refused tests when I became pregnant with Isaac (Elliot was just a few months old). I knew better and to me, it did not matter.

Down syndrome is beauty in a very raw form. Pure beauty.

Cliché to those who are blessed to have a child with Down syndrome, but to others, a death sentence. A palpable death sentence, otherwise why terminate?

Mothers and fathers, and sisters and brothers, and anyone who knows well, a child or an adult with Down syndrome would agree: they are magnificent, enlightened human beings, brought to this terrain with a purpose. They see only beauty on earth, and through their sight we are free-thinking, we are more open-minded, we are loved and we love.

But to those who know nothing of the extra chromosome, the potential life is lost…lost in 91-93% of cases.

I know that the majority of the individuals who read this blog have a child or a relative with Down syndrome.

But, for those who do not, I have once again tried to write 31 posts. Unfortunately, this year, I have failed. Simple life got in the way.

October is Down syndrome Awareness Month. And every October, really every day, I try to educate.

I would like to believe that we live in a society that no longer practices Eugenics (through abortion). Maybe I should not go there, but does the biologist who founded the movement so many years ago still have influence? Why else was the 2007 recommendation made: “All pregnant women, regardless of their age, should be offered screening for Down syndrome, according to the Practice Bulletin issued by The American College of Obstetricians and Gynecologists (ACOG).”

What really is a desirable trait and what really is a defect?

In my estimation, it is not for us to say. But what I do know is that if given the chance to take my Elliot’s extra chromosome away, I would not do so.

Life for my dear boy has not been easy from a medical standpoint. And really, it never will be. But yet, he pushes through. He smiles. His courage is unwavering. He does not complain. And he loves, so very unconditionally. Every day I learn something new. Every day I love a little more. My path is more beautiful than I ever imagined…

Thanks

To

Elliot.

31 for 21 – Down syndrome Births Drop in UK

More accurate screening and an increase in the number of younger mothers being screened for Down's syndrome may have forestalled an expected increase in the number of babies born with the condition in the United Kingdom, a study shows.

More accurate screening of moms in the U.K. meant fewer Down's syndrome births, according to new research released this week.

From 1989 to 2008 in the number confirmed prenatal or postnatal diagnoses of Down's syndrome in England and Wales increased by 71 percent -- from 1,075 to 1,843 -- according to Dr. Joan Morris and Dr. Eva Alberman of Barts and the London School of Medicine and Dentistry.

However, the number of babies born with Down's syndrome remained relatively steady despite an increase the age of mothers -- there were 752 in 1989 and 743 in 2008 -- because of terminations following prenatal diagnoses, they reported online in the British Medical Journal. The termination rate remained unchanged.

Dr. James Goldberg of San Francisco Perinatal Associates, past chair of the American College of Obstetricians and Gynecologists' Committee on Genetics, said he didn't know whether there was a similar trend in the United States or in other countries.

He said he believes the situation would be much the same here, although at least one small study has shown an increase in the number of live Down's syndrome births over time in women older than 35.

A spokesperson for ACOG noted that there are no national U.S. data on the number of women who receive prenatal screening for Down's syndrome or reliable data on the number babies born with the disorder.

Morris and Alberman examined data from the U.K.'s National Down Syndrome Cytogenetic Register, which includes about 93 percent of all diagnoses of Down's syndrome in England and Wales.

The database included information on diagnoses in live births and stillbirths, as well as antenatal diagnoses and subsequent terminations, fetal losses, and a small number babies brought to term.

Over the 20-year study period, the large increase in diagnoses occurred even though the overall number of births remained constant.

Starting in about the mid-1990s, the researchers said, screening for Down's syndrome has been improved through new methods and technologies.

Aside from the slightly different ages at which pregnant women were previously recommended for screening in the U.K. and U.S., Goldberg said, screening in the two countries is similar.

Now, in both countries, it is recommended that all pregnant women receive an offer of screening with a discussion of the pros and cons.

Without these improvements in screening, Morris and Alberman said, the number of babies born with Down's syndrome would have increased by an estimated 48 percent -- from 959 to 1,422 -- as a result of women waiting until later in life to have children.

A 40-year-old has about 16 times the risk of having a baby with Down's syndrome as a 25-year-old, they said. During the study period, the proportion of women younger than 37 who underwent screening increased from 3 percent to 43 percent.

The proportion of women 37 and older who underwent screening, on the other hand, remained constant at about 70 percent.

Morris and Alberman said additional studies to determine why more older women don't receive screening for Down's syndrome would be valuable.

"To ascertain whether the decision is an informed one and, if not, to address the lack of information, is important," they said.

During the study, the percentage of pregnant women who received diagnoses of Down's syndrome and went on to have the pregnancy terminated remained steady at about 92 percent.

Goldberg said that in California, data indicate that this proportion is closer to 60 percent.

But he noted that a large database of all Down's syndrome diagnoses does not exist in the U.S., and the figure is likely to vary widely throughout the country.

The ACOG spokesperson said that it's unclear how many terminations result from learning of a Down's syndrome diagnosis, because "[neither] the CDC nor anyone else collects data on the indications for pregnancy terminations."

31 for 21 – or not

I’m a horrible 31 for 21 blogger this year. Must be in a funk. There are multiple things to say and multiple ways to say them, but no words. I’m scared. I’m horror-struck and afraid that Elliot is going to get hit very, very hard with H1N1 and there won’t be a damned thing that I can do about it. The city is flooded with sick children, sick adults, sick everyone. I know what an upper respiratory infection does to his system; I know what basic illness does…I do not know yet what this will do. We get stuck in a hospital bed for a week with a cold because of the refusal of fluid. We’ve done pneumonia; we’ve done RSV; we’ve done Influenza A twice. We have not done this and momma is scared.

Many typical children that I know are out for a week. A friend said like a puddle on the couch with tears and tummy aches and fevers spiking at 104+. My E will be in the hospital. It’s a given. I know – there are others like him and many, many other friends whose children will be hit harder than hard. E is not alone. Let’s all pray that it goes away soon.

31 for 21 – October 18 – All decked out

I loved this costume. It actually came from our dear friends, Rhett and Pam.

Elliot crashed hard after an eventful Halloween a few years ago!

31 for 21 – October 17 – Parenting

Worth reposting - go Parenting Magazine! Do check out the 2009 entries as well.

31 for 21 – October 12 – Wee E

Such a little pumpkin – Wee E weighed in at a whopping 5 pounds in October of 2006. Still my little man, he now sits at 24 pounds at three years old. He’ll always be my baby!

31 for 21 – October 9 – A blessing and a curse

Sorry, no Elliot photo today - today took a turn.
___________
I suppose one could say that I am savvy from a medical standpoint. A mother learns quickly when multiple organs and multiple specialists are involved; when prematurity is involved; when home health, home medical equipment; when the masses

are

involved.

Indeed, the extra chromosome, beloved as it may be, has thrown many a momma a hell of a curve ball.

If momma is not involved, does not learn quickly, does not ask the right questions to the right specialists at the right times, things fall through the cracks and babe suffers.

My babe has not suffered. He is armed, and both fortunately, and unfortunately, so am I.

But still, with all of the information in my head, I tend to read between the lines a little bit too much. And sometimes, it’s not a good place – between the lines.

Case in point – today.

I know leukemia, not personally, but I know many a mother who has dealt with the wretched disease (they are rocks and they are smart and their kids receive the best care known to man). I know that Elliot has a higher probability than others who are not chromosomally enhanced. I know what to look for.

But today, it was Isaac. The groin nodules, the bruises, and thank heavens, no petechiae. Yah, he’s two and is a crash and burn kind of kid, hence the bruises, but then I see a big one on his lower back.

I

AM

A

MESS.

Call to pedi; immediate appointment today (GOD love her); blood work STAT; and no, she indicated that I was not really that crazy. Said she runs CBCs all the time to rule things out on her own kiddos. Well, we ran it all, and she did not question me.

“I know; you and Elliot have been through a lot; his surgeries; his ‘stuff.’”

“It’s okay, lets run it all stat and you can breathe over the weekend.”

She calls me – ‘herself’ (you all know – pretty damn rare unless they are good).

“Michelle, it’s normal – we are waiting on the SED rate, but the majority is normal.”

I am breathing. My husband wants to cut my head off, but I am breathing. Isaac was probably poked for nothing, but I am breathing…I am armed and my kids are armed.

So yah, a blessing and a curse. The knowledge. But, when the rubber meets the road (often in our household) it’s more of a blessing. It’s better to know and treat if need be…and it is better to breathe.

31 for 21 – October 8 – School Boy

A little bit out of succession, but this is too cute not to post now. Elliot loves school, especially when he gets to play in shaving cream with his buddies! I tried for the life of me to fiqure out what he smelled like when he came home that particular day...

31 for 21 – October 7 – Those Eyes

Sometimes the day turns into night and I don’t even know what happened. Like yesterday, when I neglected to get my 6th post up. It was a crummy day with no rest for the weary and getting up at 4:30 a.m. to get a few things done before the rest of the family awoke did not seem to help.

And sometimes, I just need to learn how to let things go. There is always going to be the person who rubs me the wrong way. There is always going to be the bitter driver who turns right in front of me and uses a horn when really it was MY turn to use it. There will always be situations that I cannot change or attitudes that I cannot alter. Yesterday was a day full of people and circumstances like that. But last night, after one hell of a day, I looked at my Elliot – full of smiles and eyes bursting with his special fairy dust. The kid has the most incredible eyes – one look and you see right into his soul. Many children with Down syndrome are blessed with gorgeous Brushfield's spots: beautiful speckled irises. The little white spots occur in many ‘typical’ children, but are far more frequent in kiddos with Trisomy 21. They were described in 1924 by Thomas Brushfield and are due to aggregation of a normal iris element (connective tissue). Truly beautiful is what they are. One look and nothing else matters. Elliot is, beyond doubt, a gift from God.  If you click on the photo below, you'll see what I am talking about! ;)

31 for 21 – October 5 – Big Sis!

Elliot will forever have his sister wrapped around his finger. Nora, at the age of 4, had seen more from a medical standpoint than most people see in a lifetime. She’s such a strong little lady because of it. She’s really Elliot’s biggest cheerleader and does more than her fair share of advocating. I am so proud of her. Down syndrome changes a family dynamic. The real meaning of life and love is always prominent.