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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!

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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!

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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.

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Origin of the “Lily Lu Whos”

 

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As many of you know, Lily’s Buddy Walk team is called the “Lily Lu Whos” – ever wonder why?

When Lily was still in my tummy we called her Lulu. We knew her middle name would be Luet but waited until we met her to give her, her first name.

Now I, like many of my previous co-workers always came up with nick names for the animals we worked with at the zoo (oh yeah, I was a zoo keeper in another life). I was especially bad- I even named quite a few animals and still gave them ridiculous nick names! So it was to be expected that I would continue the tradition with my daughter.

My husband was the first to coin the name Lulu but once she was born and named Lily- my primal need to nick name took over. It started with Lily Lu and as I got to know this little spirit, I began to understand that she was unlike any other child I had ever known- she exuded joy and innocence and silliness. So then I began to call her a little Who like the Dr Seuss Whos. And…..wait for it….yep, then came Lily Lu Who. Although she has had several affectionate nick names from her crazy mama, this one really stuck when I was finally able to put her hair in a pony tail (top knot style). Oh yeah, her outer Who was beginning to match her inner Who.

Hence when the time came to choose a team name for her- The Lily Lu Whos was the only reasonable choice! We look forward to dressing up as Whos in her future buddy walks.

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To Brother or Not to Brother…

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After confirming Lily’s extra chromosome, several people in our life had questions (go figure!). One thing we were asked was if we were going to have more children. We found varying opinions on this from both parents with a child with Down syndrome and parents of children with typical syndrome (oh yes I said it- sort of made it up, lol).

Some were fearful or thought we should be fearful to have another child, lest they too have DS, others said it shouldn’t stop us and still others said we should have another baby to help spurn Lilys’ development.

If you look at the photo then you know which direction we went J. Seriously though- we knew we wanted more children and began planning for our second child when Lily was 6 months old. When she was 11 months old, her baby brother was already baking.

We wanted another baby for us……and for Lily. Some may not understand this point but I will do my best to clarify. We want to have children until we feel our biological family is complete. Maybe that will be two or maybe it will happen after the third child- we don’t know. We only know that our feelings on wanting more than one child did not change with Lilys’ diagnosis.

Just as some want their first born to have a sibling to go through life with, so did we. We wanted a sibling for Lily so she can have an ally, so she can have someone to compete with and stay motivated by, so she will have someone who will reciprocate her unconditional love and so she will have someone to take care of her when we are no longer here.

That last sentence is hard for me to write. So many people with DS end up in homes when there is no family to help them. It is my prayer that Lily will never endure that. No, it is not her brothers’ job to take care of his sister but we hope to raise all of our children to feel it is their honor to take care of each other.

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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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