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.

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“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

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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Fish are friends, not food!

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Okay so maybe some fish are food- especially in stick form 🙂

Since Lily was 4months old, I have been taking her to the Aquarium. She was fascinated with all the lights and the glow of the water in the tanks. Down syndrome affects the overall ‘tone’ of the body and people with Down syndrome have ‘low tone’. This doesn’t mean they are not strong or have muscles, just that the tone of those muscles is low which makes some of their muscular responses react slower.

For Lily, when transitioning from a light to dark environment, her pupils would get huge. This is something that happens to every child, but Lily’s pupils would linger a little longer than the norm. This made her look like a child in absolute wonder of the world. I would stop and just stare into her eyes, hoping to catch a little childhood wonderment myself.

Now, at almost two years old, she still adores the Aquarium and points to the fish and pets the turtles and peers deep into the glass with her baby blues to see the wonders of the ocean.

How I met Lily Luet

James and I tried for 7 months to have our baby. This is our journey:

 We finally got up the nerve to actually have unprotected sex, we were totally convinced that what our parents always said was true- you will get pregnant if you don’t use protection! Well imagine our disappointment when that is not what happened. Our parents LIED! (lol, okay I ‘m over it now). Anyway, I finally got irritated and went to have a fertility test done where the flush out your fallopian tubes. Here’s where our incredible story really begins.

During this exam the tech kept asking me all kinds of bizarre questions like, “Do you have 2 cervixes?” or my favorite “Have you ever been told you might be unusual?” I lay there on the table spread eagle with a balloon inside me wondering what the hell does all that mean?! As it turns out, yes you can but I didn’t. I received the phone call from my doctor the next day. She told me I had a rare birth defect called a unicornuate uterus. Basically I have only half of my reproductive parts. She gave me a 50% chance of ever conceiving and less than that of being able to carry a baby to term. Then she told me to get an ultrasound done to test my kidneys because I may only have one. (Nice doc huh?) Oh, and then to have a nice day. (I am not kidding). I won’t bore anyone with all the medical stuff here but the final result is this: I have 2 ovaries, 2 tubes (but only one works) and a banana shaped uterus, which means it is smaller than a normal one. This is very rare but not a lot of research has been reported on it. Oh and I have both my kidneys phew!

So we signed up to see a reproductive endocrinologist April 14, 2011. There we learned a lot of insightful and scary information that as it turns out we did not need because little did we know we were already pregnant! (On our own, I might add).

I was waiting for my period to show so I could move forward with some additional fertility testing when it did not show. This was April 21, 2011. I was working at the zoo in Utah and I knew something was up. I dared to hope but waned my excitement. When I got home I was irritated, I texted James to bring home a pregnancy test because I didn’t want to go back out (I was tired and cranky). He comes home but empty-handed (he never got my text because his phone died). Here is where I turned into a different person (literally because I am a very calm person normally and this woman was crazy). I will spare the details but I ended up slapping my husband across the face and then crying in my closet. This is where you all will adore my husband: He said (right after I hit him) “That is interesting; I am going to the store now to get you that test.” LOL!!!!! Oh my God he is awesome.

We tested and saw 2 pink lines right away then sat down and had a discussion about pregnancy hormones!

Since I was considered high risk we began seeing a maternal fetal doctor and had a sleuth of visits and ultrasounds. Each ultrasound was both the worst moment and the best moment (remember I was told I would probably miscarry at anytime). We made it to the 12 week mark and while my fellow baby bumpers were celebrating relief, I was growing more terrified. I was in this and terrified that as my baby grew, I would not be able to carry her any longer. Losing her now would have murdered my spirit. At our 16 week ultrasound, we found out we were having a little girl (omg, yay!!!) and then we found out there was something wrong with her….a lot of somethings. They found 6 soft markers that indicated down syndrome including a possible heart defect. The very same day we found out we were having a daughter; we were given the option to terminate her. (yeah). We went home (declined the genetic counselor because she was just awful) and did a little research on DS. We grieved for the baby we thought we were having. We called our family and friends and told them the news and to prepare for a child with DS to enter their world. (We never once thought about termination). We declined the amnio because I couldn’t decide about it and James did not want to risk it. By the way at 20 weeks, all of her soft markers were gone except they couldn’t see her nasal bone.

A nasal bone, such a small thing, yet such a huge deal. Don’t take your noses for granted! 😉 (My mother thought that meant Lulu did not have a nose! Tee hee, I still laugh about that today.

Speed through the rest of my pregnancy which although was very normal, I felt was somewhat stolen from me. Too much information can be a curse; I wanted to be blissfully ignorant.

At 34 weeks my doctor thought Lulu may be starting to experience IUGR and we may need to induce me early. We took it week by week. By now I have quit my career, moved my business and my family all the way back home to Oklahoma! I went in for a NST on Friday, December 2, 2011 and didn’t come home until 5 days later.

This is getting really long….sorry to those still reading….anyone??? Bueller…….;)

At the ultrasound I could tell something was wrong ( we were getting really good at this now). They sent me straight to my doctor’s office but wouldn’t tell me what was wrong. I knew she wasn’t moving but they kept looking at her heart on the screen and I could hear it beating. My doctor was in surgery and so we had to wait but all his nurses greeted us at the door (not a good sign). We chose to wait in the hallway and I literally slumped to the floor, holding my belly and pleading for her to be okay. My husband called his mother and asked her to pray for us. Finally we are sitting before the doctor; I am functioning on pure terror now and can hardly keep it together. He starts out reading the ultrasound report and everything sounds fine. I couldn’t contain myself any longer and I blurted out, “What the hell is wrong with my daughter now?!” He laughed and said, “Nothing.” He said she wasn’t moving very much and wasn’t practicing her breathing like they would have liked to see. He then said, I think it’s time to have this baby. What are your plans this weekend? (lol, oh the humorous things I could’ve said here). He admitted me right away for a night of observation and would induce the following morning.

Here comes the dramatic action part……

I get into my room, get my attractive hospital gown on and get hooked up to the monitors. I settle in my new bed and text some people on what is happening. James left to take our dog to my mom’s house for the night and I began thinking about what it will be like to give birth. (I was going to have a natural, drug-free experience and then hold my daughter skin to skin and breast feed right away!)

I was admitted at 4pm and my daughter was born via emergency caesarean at 5:17pm (amazing how easy it is to remember the exact time you had your baby, huh?)

As soon as my husband left, the nurse came in and said, “huh, do feel any contractions?” I said no just a bit of cramping. She said well the babys’ heart beat keeps dropping when you have a contraction. We will keep a close eye on you two. 5 minutes later, my doctor comes in in scrubs (yes scrubs) and says call your husband you are going to be parents right now. (Oh the curse words I could use here to explain my emotions…) He said you are in labor with contractions coming every 2-3 minutes and Lulu’s heart doesn’t like it. She will not survive labor so we have to perform an emergency c-section (I am not about to attempt to spell that out again). My husband was across town in 5 o’clock traffic trying like mad to get to me. I went into what I can only see now must have been a state of shock. I began shaking uncontrollably. They wheeled me into the OR (that’s how you know it’s an emergency- no option to walk) There were people EVERYWHERE. I was watching everyone while waiting on the anesthesiologist (my team of doctors, because I was so special ;), the attendants and the NICU team (I was 36 weeks along) and a pediatric cardiologist. The spinal went fine considering I was shaking off the table. On a side note…..the operating table was the skinniest table I have ever seen in my life- I was sure I was going to fall off of it!

So I told whoever would listen that I did not want my arms strapped down or I would panic ( I had heard they do that with c-sections) and my drug dr (not gonna spell that out again either) was very nice and said I won’t do anything you don’t want. Lo and behold I ended up panicking anyway because as the spinal took effect and I couldn’t move lower half my shaking got worse and I thought I was gonna explode. It was at this time I tried to sit up and I told everyone in the room that I was leaving. I told them that this was happening too fast and I needed time to think. (Oh yes I did). I was met with the strangest looks and my nurse told me, “You are okay and you’re going to meet your daughter now.” My very nice drug dr. told me as soon as she was born he could give me a mild sedative for my anxiety, I told him no. It was also at this time I remember my doctor yelling, “Is James here? Bring him in here NOW!” By the grace of God (and I really do mean that) my husband made it, barely. He came in grabbed my hand, took one look at me and said to my drug dr, is she okay? I don’t remember what he said. Two seconds and a lot of tugging later my daughter was born into this world. I will never ever forget the look on my husband’s face as he peered over the curtain and saw her. Tears sprung to my eyes and I fell in love with my husband all over again. Then I noticed there was no sound, at all in the room. I didn’t get to see my daughter at that time, I told James to go to her and I laid there listening and praying. Finally I hear a tiny little whimper. (That is a sound I will never forget). James returned with our daughter and showed her to me briefly (she was amazing with wide open eyes, so tiny) and I wondered, is this my baby? (okay so I was a little disconnected) Then the neonatologist came over ( he loomed over me so I remember him as a floating head) and said “Your baby is okay, her blood was flowing the wrong way so we are taking her to the NICU and she looks like a downs baby to me.” ( I will say here that this doctor and I ended up having a great relationship despite our introduction!) I looked at the drug dr and said, “Okay I will take that sedative now.”

I will wrap here…you all know the ending anyway. She spent 11 days in the NICU but that story would have to be a sequel as this one is way too long as it is. To this day I still feel that both my pregnancy and my birth was stolen from me but it is hard to dwell on that when I have a beautiful baby girl that got to make all by ourselves!

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