I Am….

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We are engagingly looking at a statue when I see her staring hard at my daughter. I look back at her and she quickly looks away.

He stares at me while I politely decline to sign the waiver for my daughter’s photograph to be used in an online publication. Other parents tilt their heads my direction.

They smile with sympathetic eyes while I am enjoying playing with my daughter.

I am crying while I am driving because the music on the radio will disguise the sound so my children don’t hear and get upset. I am not sure if I am sad, stressed, tired or frustrated but the tears don’t discriminate.

I am screaming for joy as I sweat through my shirt, walking in the sun for 20 minutes in a crouched position holding my daughters hands because she suddenly wants to practice walking.

I am on my knees begging God for strength and to be a better mother.

I am allowing myself to be vulnerable to complete strangers to hopefully gain a little insight as to how to better help my daughter.

I am constantly thinking, reading, analyzing and observing every thing. No task is mundane, all must be thoughtful.

I am on a first name basis with and can tell you all the good doctors in various specialities in town.

I am daringly hopeful when I hear the latest research discovery that may help my daughter.

I am awake in bed thanking God that He allows me to be this little girl’s mother, even though I may feel like I am not good enough.

I am a mother to a special needs child.

God didn’t make me more special or stronger than you and He definitely did not give me super powers. But He did give me a daughter and now a son that I will do anything for.

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Roses are Red

Roses are Red

Roses are Red

Violets are Blue

Worry not mama

The world loves Lulu.

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“Every parent wants to know that their child will have friends and find love…. The truth is that regardless of how many chromosomes one has, you will get your heart broken and you will fall in love and you will have that love returned. I will forever stand beside her, supporting her and loving her through all the trials and tribulations life throws at us.”

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I wrote that a year ago. In this last year I have bore witness to many amazing things. None have been so powerful as watching how freely Lily expresses herself. She smiles with her whole body. When she is sad, the whole room weeps, when she is happy, she lifts every ones mood. And when she hugs you, you feel like the most special person in the world.

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Lily has friends. Correction, Lily has lots of friends. She has friends with disabilities and friends without. She helps care for babies (like her brother), she plays games with friends her age and is even welcomed by kids much older than her to join their activities.

Lily has friends. Lily is loved.

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Her road will be different and her future uncertain, but Lily IS loved.

“Sticks and stones will break my bones but words will never hurt me.”

If only that were true.

 

I have always been a sensitive person- I try to be empathetic to others, am careful how I speak to people and treat others with respect. That was how I was raised. I think because of this, I have never been terribly offended by others because I can find empathy for their ignorance. When I first met Lily some of that changed.

First of all, becoming a mother made me more sensitive but less tolerating. More patient but less accommodating. More appreciative of life but less comfortable. Becoming Lily’s mother has made me more vocal, social and somewhat confrontational.

I am many things but one of the more important things I am is an ADVOCATE.

A majority of people with Down syndrome are classified as mentally retarded. Meaning their IQ is under 70 and they will need help navigating life. The word retarded may bring up several different images in your mind. When I first learned Lily will most likely be retarded, I thought of someone with a distant gaze, their mouth hung open and drooling. I have since learned that retarded can mean many things from my image to someone who needs a tutor in school to someone who just doesn’t have the ability for abstract thought.

I have also learned what retarded is not.

Retarded is NOT – someone behaving badly/ someone being silly/ someone making a poor choice/ etc.

Not many things offend me, but I am a mother to a little girl who will be retarded in some form. Can you imagine how I must feel knowing that?! How difficult it is to see her learning her colors and animals and in the back of my mind there is this dark cloud of knowledge that she will struggle with learning? How painful not knowing how this will affect her in life? Now imagine hearing people use the word retarded to refer to something foul, horrible, or annoying.

There have been a few words that we as a society have erradicted from our language and I am ready to see the casual, off-handed use of this one gone for good.

Understand that I know ‘what you mean’ and I know ‘you weren’t talking about Lily’ and I even know ‘that its just a word’ and ‘not personal’. But you should know that I am an ADVOCATE. Every time people misuse that word it creates a bias against my daughter. Most people will do anything to protect their children and I am no different.

The way you speak carries more weight than you realize and leaves a lasting impression on society as a whole.  Speak well – Lily is watching.

 

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What’s In A Name?

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As a biologist, I spent several years learning the names of things and more interestingly learning that most things are named after the people that discovered their existence. This made for some very tough spelling challenges along my academic path! When I first heard the reference, Down syndrome, I wondered why is called ‘Down’?

For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn’t until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down, the recognition as the “father” of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.

To say that Lily is a Down’s baby is actually incorrect- she is not Dr Down’s baby- she is all mine! J

Once Upon a Time….

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There is important talk about inclusion with children with special needs in mainstream classrooms. (I will talk more about that on another post) Even though Lily does not attend school yet, she has many activities she attends and all with other kids her age, not her disability.

Her current favorite activity is reading her picture books. She can thumb through each page and happily points to different items asking me, “What’s That?”. She varies from saying the word to making the sound that goes with the picture and sometimes will sign as well.

Every Wednesday we go to story time at our neighborhood library and Lily gets to check out new books to bring home and play with her friends. Now that Oz is attending story time with her, she enjoys reading books to him at home. Only this time she doesn’t bother asking him. “what’s that?”- she just tells him!

Lily also attends a museum babies class at the Gilcrease Museum, painting classes and music classes held at various libraries and a host of play dates! She receives no special treatment and always enjoys herself!

 

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OUCH!

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No one wants their child to endure any kind of pain. However, some pain is good and keeps us safe from further harm. I have read that people with Down syndrome have a higher pain tolerance. I believe that Lily does have a high pain tolerance and it does not always serve her well.

Lily had trouble feeling the ‘pains’ of being full and therefore would easily overeat until she threw up. Since she has been eating solid food, we very carefully measure out her food to ensure she gets enough calories but not too many at once.

Most babies will cry out when uncomfortable or they need something (Oz has mastered this concept!) but Lily never did. Dirty diapers, hunger, even her reflux weren’t cause for her to scream out. Now that her journey has taken her into the ‘terrible twos’ she hollers at me several times a day about various things. Lol.

Blood draws and vaccinations will illicit a small cry easily resolved with a hug from mama. But bumping her head will lead to inconsolable crying lasting for 10+ minutes-

We shall keep a careful watch as she gets more and more independent to ensure she is safe and responds appropriately to pain sensations. What can I say? Lily is a tough chick!

10 tiny fingers, 10 tiny toes, little ears and little nose….

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There are physical characteristics that can go along with Down Syndrome. Wider set eyes, lower set ears, shorter nasal bone, single crease on the palm, etc….are all identifying marks of DS. What you don’t see are the internal characteristics. These include smaller canals in the ears, small nasal passages and sinuses, higher than average palate, etc. This increases the chances of respiratory sickness in people with DS. They are more likely to get pneumonia, colds, bronchitis- those sorts of illnesses.

Lily has had pneumonia twice (once due to aspirating her milk) but has been extremely healthy otherwise. In February of last year, she failed her hearing test, missing the low tones. They discovered she had fluid in her ears which without tubes, would continue to build up and cause speech delays and even deafness. So we joined the ENT surgery club. Lily’s surgeon also wanted to remove her adenoids because it is very easy for them to block the ear canals creating trouble.

After much research (even outpatient surgery is not without risk) we prepared ourselves to allow our little girl to be put under anesthesia and have the tubes placed and the adenoids removed. We had been through so many scares with her that we weren’t necessarily scared but it is a little known fact that I have some control issues (I know, shocker!) and I had a very hard time just turning her over (passed out from the goofy juice) to a complete stranger. I am sure my friends that have had to endure so much more intense surgeries with their children are rolling their eyes at me right now but for that 20 minutes, I couldn’t even sit down I was so ready to run back to her! Lily did very well and was back to her normal self by that evening only now she could hear even better!

As she gets older, we begin to see her change from a baby to a little girl and that includes seeing the characteristics of Down syndrome emerge more and more. After she turned 1, people outside our circle began to ask if she had DS- at first I was taken aback. I wanted people to see her for her not just the DS. However, as I gaze at my daughter, I realize that her appearance is a beautiful blend of the DS traits and  us. I don’t think Lily is cute or pretty. I think she is stunningly beautiful. A truly unique masterpiece.

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Happiness Is….

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Happiness is a beautiful fall day and time off to enjoy it. Happiness is a hot cup of coffee, a great book and a comfy chair. Happiness is the birth of your children. Happiness for Lily is finding Elmo in the pages of her book, matching the right colors together, getting her puzzle piece to fit on the first try, hugging her friends and receiving one back, fitting all of her animals into her little toy barn, sneaking food to Molly when she thinks I am not looking.

Happiness is not Down Syndrome.

The most bizarre misconception about DS is that people with DS are always happy. I have lost count how many times I have heard this and most of the time it is the first thing people tell me about what they know of people with DS.

I will be honest, those of us with children that have DS find this to be most irritating. Speaking only for myself here, it feels like people are trying to give me a consolation prize. Almost to say that since you couldn’t win the ‘normal’ child at least they will always be happy and a joy for you. Whaaat????

What is really puzzling is to hear this from people who claim they used to work with people that have DS. There is no way someone who truly knows a person with DS can honestly think this. Unfortunately, DS does not give one super powers and does not alleviate the human condition of emotion.

Although I would love to spare my child the emotions of sadness, rejection, defeat, despair, heartache, etc, she wouldn’t be human without them and at the end of day, even people with Down syndrome are human. 🙂

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Blood, Sweat & Tears

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A diagnosis of Down syndrome comes with many things. Most of which sound scary, especially the list of potential medical problems. From heart problems to thyroid to respiratory, the list can be overwhelming and intimidating. Children with DS even have their own Pediatric Guidelines for testing.

Lily has no heart problems. This is huge, as many of her friends are members of the mended hearts club. She is and will be tested annually for any thyroid problems. This involves a blood draw. In Lily’s young life she has had several blood draws. When she was 3 months old she spent 9 days in the hospital with pneumonia. As scary as that time was, nothing compares to last December.

Lily has had trouble gaining weight – this is common for children with DS and can be the first indication of thyroid problem. So her pediatrician ordered a blood test. Here they would test for a slew of problems including leukemia. Lily’s blood test came back with high phosphotase levels. A second blood draw, and a consult with an endocrinologist later we were told she may have bone or liver disease. To rule it out she had to endure yet another blood draw and a bone scan of her entire body.

She had so much blood drawn, she was put on a 30 day suspension from any further blood draws- meaning she had no more to give and needed time to allow her body to recover. The bone scan consists of x-raying every bone in her body. Not painful but a little uncomfortable and very scary for a 1 year old.

The day Lily had the bone scan was a hard one for this mama. I was pregnant with her brother and could not be in the room with her. Knowing this ahead of time, her Aunt Sarah was able to come and take my place to guard over her and offer her comfort. I sat outside the room and listened to her cry for what seemed like eternity. I knew she was in hands as good as my own with Sarah but I still ached to go in and ‘save her’. Once completed, the waiting game began.

Her Endo Dr said he would call if there was bad news and send a letter if it was good news. Obviously we prayed for a letter and jumped every time my phone rang. Days passed and we got the glorious letter we hoped for (well sort of). It stated that ‘nothing noteworthy was seen” but also said a follow up blood test would be needed to rule it out completely.

It is truly strange the thoughts that run through your head when you are waiting to hear if your child is about to be diagnosed with a life-threatening disease. Or rather, the absence of thought. The looming threat over our daughter’s life was too big for me to digest at that time so I didn’t. There have only been a handful of times I have actually got down on my knees in prayer. I pray daily but not usually in that form.  I dropped to my knees and prayed, begged for my daughter. I have felt God several times in my life and know His presence well. As I took comfort knowing He was there, my phone rang. I answered. On the other end of the phone was her dr. When he said who he was, I laughed nervously and told him he is not supposed to call me because that meant bad news. He told me that he usually never calls but felt compelled to call and tell me himself that Lily was fine. She did not have bone disease. She did not have liver disease. He didn’t need to see her again.

Amen.

Since that time, Lily has remained healthy with no real concerns. She will continue to be tested every year for the various things that can haunt a person with DS and we will continue to pray for her health.

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DELAYED DELAYED DELAYED

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Whether you are a new parent or repeat parent, you will find yourself getting caught up in the excitement of your childs’ milestone achievements. You celebrate all their firsts. You anticipate their next accomplishment and try and wait for it as patiently as you can. Because as they meet each one, two things happen: 1. We know they are okay, they are ‘normal’ and 2. They get more and more fun and beginning turning into little people, not babies. Everything is wonderful until the word DELAYED enters your world.

Delayed is a scary word followed by lots of unknowns. Some things you don’t even know that you don’t know. If you are a parent of a child that has DS, then this was one of the first words you heard about your child.

We were told that Lily will be delayed in motor, speech and cognitive skills. As she accomplished each early milestone, we celebrated just as any parent. Lily was on time for all of her early milestones (rolling over, smiling, laughing, sitting up, babbling, etc). When she was learning to crawl, we got our first glimpse of how hard it seemed for her to learn it. And then how she had to practice extra hard to get the strength to go very far. So when she first crawled across the room, we celebrated hard, like she just cured cancer kind of celebration.

We felt good, Lily felt good, life was good. Her therapists all said she was developing on time and even a little ahead of schedule on her cognitive and speech abilities. Then suddenly everything changed.

As Lily was learning to cruise and preparing to take her first steps- we notice that she had plateaued, meaning she hadn’t made any real progress in many months. She had lost her motivation somewhere. Now, I will say here that we knew she would be delayed in walking at least by a little bit. They consider one delayed if not walking by 18 months old. But she had been doing so well, we weren’t prepared for what a delay would be like for her and for us.

My first glimpse into how a delay could affect my daughter, literally broke my heart. Since almost all of Lilys’ friends are walking, she can no longer keep up with them. There came a day when she was attending a party with some of her walking friends and once they took off outside to play, Lily was stuck playing alone- the look on her face when all her friends left and she realized that she couldn’t keep up with them, would make any mother’s heart ache. Since that incident and others like it, she has lost her confidence around others. My sweet, social little girl is now a shy, insecure one.

DELAYED. This word looks and feels so different to me now. Now I understand what this word can mean. Lily will walk and do all the things others can and sometimes she will be on time, or even ahead and she will most likely be delayed too.

Walking is so hard for her, not because she can’t do it but because she is scared to walk, scared to fall. We are working very hard to give her the security and confidence to achieve her desire. As parents, that is part of our sacred duty. No parent wants to see their child struggle or feel defeated, but we all will. Maybe as a special needs’ parent, we just see it earlier than others but struggles are a part of everyone’s life.

Celebrate your children’s strengths and encourage them through their weaknesses. You can bet we will be celebrating loud and proud when Lily takes her first brave steps!