Tuesday, May 15, 2012

Should I Be Offended?

As you may have read earlier, I have been watching a lot of Futurama on netflix while I pump and feed Adaline. Well, the time came when I had watched all 100 available episodes and needed to look for more mindless entertainment. I stumbled on a show called Workaholics and decided to give it a try. In one of the episodes there was a character with down syndrome. My instant reaction was "Should I be offended by this?"

If you have been reading this blog long or know me, you probably know that I can be easily offended. A good example would be the mental list of things people have said to me about Adaline that have offended me that I am debating I should write a blog post about or not.

However, there is also a long list of things that many people are offended by that don't offend me. One example is the "R" word. Whenever I would see the campaigns against the "R" word before I knew I would be Adaline's mother, I truly thought it was a waste of someones time. I am honestly still not offend by the word. Granted, things may change as Adaline is able to understand names and be hurt by them, but for now it is something that doesn't bother me. I want my kids to learn not to define themselves with one word. Good or bad, true or not. Whether they're mostly known for being disabled or as a star athlete, I want to instill in them to always remember they are much much more.

I do however realize that I am in a new circle and many, if not most of the people in it probably are understandably offended by such things, so I do want to be respectful of that. It is hard though. With the list of taboo things not to say growing every time I find a new blog, I have a hard time communicating what I am trying to say. For example, the term "Special Needs" also seems to be becoming taboo. It is becoming hard to describe my daughters condition in less than a paragraph.

Back to the original topic, I decided to query the internet to see if I indeed should be offended by the role that this actor with down syndrome played on the show and I was surprised to find out that most parents were not offended. Many found it refreshing.

So, how have I decided to feel? I decided that I am a bit offended, but not because of the way the person with down syndrome was portrayed, but because the show itself is a bit offensive. :). I actually love the role he played. He was just one of the guys. He had wit and even rescued the guys in one scene. It was very tastefully done. My favorite part though was how the writers even poked fun at how people react try and be politically correct to retarded, special needs err...(however I am supposed to describe what I am getting at here). In the first scene the actor introduces himself to the main characters as the ISP supervisor. When they slightly question him, his response is "what, don't you think I could be an ISP supervisor? The guys immediately stumble over themselves to find excuses other than the fact that he was born with down syndrome as to why they would question him. The actor then tells him he has found a lot of porn and that he can be bought to keep quiet. It is later revealed that he is the brother of their boss and not the ISP supervisor. In a later scene the actor and the main characters are trapped in an impound lot. One of the main characters happened to have a strippers police suit in the car that we were introduced to in another scene and the actor put it on to save the guys from the owner. Again, the impound owner looks confused as to if he is truly a cop and then stumbles over himself to be politically correct when he is questioned on it.
It pretty much sums up how I feel when trying to stay respectful in this new circle we are in.

Sunday, May 13, 2012

Sensory Blanket

11 Weeks 6 Days

Adaline's therapists have been suggesting that I cut up pieces of fabric with different textures for Adaline to hold. I get the getting her to grip different things, but I don't understand why "sensory" is so important. When I would look at blogs for ideas for things to do with Jamin, I see things to put in "sensory" bins and have always dismissed them as boring or unnecessary. However, the experts know best. I was worried that with Jamin around little scraps of material would get everywhere, so I decided to make something to hold them together.

So... I made a quilt. Adaline's great grandma was kind enough to let me raid her fabric stash for various fabric textures. I used black and white fuzzy dot material for the center and a primary color backing since I had that material on hand. I decided to tie it on the back so that the ties would to distract from the textures on the edges. I had planned to either tie the strings in a bow or trim them short, but as I was working on it, I set Adaline down and she seemed to really like holding on to the ribbons, so for now the back is quite shaggy. I was worried about the ties looking good on both sides, but you can barely see them on the front, so it all worked out. Hopefully Adaline's OT that is coming tomorrow will be impressed.

Does anyone want to explain why "sensory" is THAT important?

Wednesday, May 9, 2012


11 Weeks 2 Days

She got a fairly good report at the cardiologist. I really like her doctor. After the eye drama, she told me to call her before we refer go to any referrals in the future, because she knows a great pediatric ophthalmologist in Grand Rapids she would have sent us to.

Her VSD is closing and she is not showing many symptoms of heart problems because of it. She will still need surgery around August for the other issues though.

She is not gaining enough weight though. Last time they told me she should be gaining about .5 oz per day and this time they told me it should be more like 1oz per day. We are going to fight a bit harder to fatten her up, but they are threatening a GI tube if she doesn't gain better :(.

Jamin went with me for the first time and did really well, especially considering we were there for an hour and a half. I brought the portable DVD player and he watched that most of the time. He was adorable and got a lot of oohh and aahhs from the nurses.

Tuesday, May 8, 2012

Therapy, Ann Arbor and an Awesome Big Brother

11 Weeks 1 Day

Last week the Special Ed team came to evaluate Adaline. Most of the session was me signing more paperwork. I don't get that part... I feel like am secretly co-signing on a mortgage or something with all that there is to sign. I don't understand why it is needed. Would someone really call them out to their house then insist they not help their child? One piece of paperwork was to wave a 7 day waiting period in which I could change my mind if I wanted their services or not.  We also learned that special ed follows the school schedule, so they don't work for most of the summer........... I was not pleased to hear this information.
At my prompting however, the PT did do an evaluation and gave me some things to do. She was supposed to meet with us again on Wednesday, but called Sunday night to cancel........
The highlight of this meeting however was when she asked me if I owned a vibrator and she strongly urged me to purchase one if I did not have one. I gave her an "are you really asking me this?" look and she did not flinch. My thoughts turned to me walking into an "adult" store to buy such an item and assuring the cashier that it was for my 2 month old daughter and where their mind would go with that, then to "wait, what on earth is she getting at with this anyways?". I don't remember what lead us to get on the same page, but she was actually talking about a massager. Which as it turns out we do indeed own. We are supposed to put it on her body to help her realize that her limbs belong to her. She also suggested getting scraps of different textured materials to put in her hands. I have taken this a step further and I am working on making her a sensory quilt. Her great grandma has an extensive fabric collection and she let me sift through it for different textures.

Yesterday we got some more fantastic news. It all started with the last early on evaluation. Most of the things the noted her as behind in required her ability to see, so I was concerned that maybe something was wrong with her eyes and I began to start asking questions. A friends sister in-law is an optometrist and she mentioned retinopathy of  prematurity. Prematurity and oxygen use are two risk factors for this issue and she had both, but was never evaluated for it. I called Ryan's optometrist and the suggested an ophthalmologist that they just raved about. They said they were great with kids. We made an appointment and when I showed up it turns out that they share and office with them... which she failed to mention on the phone. The guy didn't really seem like he knew what he was doing with someone her size, but felt that her eyes were hard. He got out a tonometer and said that her eyes also measured high as well. He wanted to dilate her, but said there was a risk of an emergency and said he was unsure if he should do it or not. I asked if we should wait until we could be in a place where the emergency could be handled and he said he was going to send us to U of M. Since my family is awesome, my husband took the day off and my mother-in-law agreed to watch our son and we set off to Ann Arbor. It was actually quite nice to have some time trapped with my husband. We ate at the Blue Tractor. My husband and I spend our third anniversary in Traverse City and we ate at one there. They had 5 kinds of macaroni and cheese on their menu. For those of you that don't know me. I could live on the stuff. I LOVE IT, so when I saw that they had one there, we just had to eat lunch there. This place only had 1 kind and it was not as good as either of us remembered it, but it was still good and enjoyable.
We arrived at the appointment about 20 minutes early. U of M had called the week before to get insurance information, so we didn't have much paperwork to do. They called us back well before our appointment time and did some initial tests. The doctor (who looked younger than me), said she didn't see anything wrong so far, but she wanted to do a complete exam. She put some drops in Adaline's eyes and then sent us back out to the waiting room to wait 30 minutes for her eyes to dilate. We arrived back in the waiting room about 1 minute after our appointment was supposed to start. 2 thumbs up to their time management!! As we watched other patients be called back. I noticed that ALL of the doctors looked like Doogie Howsers to me. I realized this makes me old since people younger than me have had time to get through med school AND because I know who Doogie Howser is. After the full appointment, the doctor explained that Retinopathy of prematurity is much more common in 1 or 2lb babies who needed O2 right away. Since she was almost 5lb and only on O2 2 weeks after birth, she was not at very high risk. She also said that doctors who don't see kids have a hard time getting accurate eye pressure measurements. When you need to hold their eyes open to get a reading, you are putting pressure on the eye and creates a reading that is falsely high. She used a different meter and did not find her pressure to be high. She concluded that she couldn't find anything wrong at all. She wants to see us again in 2-3 months just to make sure because the other doctor was concerned, but she is not concerned. I am going to ask the cardiologist at our appointment tomorrow if we can coordinate the visit with her heart surgery.

For the last part of my post I want to talk about my son who melted my heart today. I am going to bring him with me to her cardiology appointment tomorrow so I was talking to him about it. I told him that sisters heart was broken and that later this summer the doctors were going to fix it, but we needed to go to the doctor a few times before that. We were upstairs and Adaline was doing tummy time. He ran downstairs and got a big heart sticker that he got from daycare on valentines day. He stuck it on her back and said. "I fixed her heart, it's all better now".

A Q&A With Myself About The Role God Played In My Daughters Bonus Chromosome

I feel it is important to share my feelings because A. It is therapy for me and B. I want to be a voice for other parents facing a similar situation. I want them to hear voices like mine louder than they hear the voices of some medical professionals who wrongly think the world would be better without kids like ours.

As I mentioned in a letter that I published on this blog before my daughter was born, I do not think that Down Syndrome is something that God gives someone. This is why I prayed that my daughter would be healed and born without it. However, now that she is here, this had raised another question for me and it took me awhile to get to an answer.

Q. If Down Syndrome is not from God, does that mean my daughter is not from God?
A. No, since the fall of man, we all fall short of what God intended for us. Adaline is no exception. She may have an extra chromosome that will require her to have heart surgery and that may keep her from reaching milestones when her peers do, but we all face something less than what God intended for us. Some of us will be prone to cancers, some of us will be prone to addictions, some of us will love gossip and an the list goes on.

I often here the phrase that someone is who God made them to be and now I feel that that phrase is inaccurate. No one on earth will be who God made them to be (except for Jesus). God will use everyone (even Joran VanDerSloot) to play an irreplaceable role on the earth though. I have stopped saying that someone is who God made them to be and replaced it with "They are exactly who the world needs them to be".

Wednesday, May 2, 2012

How Joran VanDerSloot Helped Me Cope With My Childs Down Syndrome Diagnosis

Looking back, the hardest part of my daughter's Down Syndrome diagnosis was the reaction of some of the medical professionals. I am not close friends with anyone with family with Down Syndrome, so I have not had a chance to walk with anyone in that. However, my first perceptions were not horrible. I knew that the Williams spent time, money and heartache to get an additional child born with down syndrome, so it could not be that devastating. I knew that other people said they are wonderful children and a blessing to all that know them. I knew that there were associated challenges, but also associated joys. However, there is just something about someone with a PhD kindly offering to help you end the life of your child that really gets your mind going. They are smart people right? Of course, at the time, I was 19 weeks pregnant, so I would have had to travel to another state to have the procedure done. It makes you think it must be pretty horrible to have a child with down syndrome if it was worth all that trouble to make sure they were never born.

I am thankful for all of the parents out there who do have children with down syndrome who have been willing to share the joys and the fact that their lives are not only worth living, but they are GOOD!

Oddly enough, I am thankful for Joran VanDerSloot. He has reminded me that choosing to bring a life into the world is risky. I was so mad that God would give us a child with not only down syndrome, but a heart condition that will require surgery as well. Especially after we went through infertility and a molar pregnancy. Joran reminded me that even if I easily conceived and gave birth to "perfect" children, you never know what tomorrow may bring. They could be hit by a car, they could get cancer as a child or they could be lacking basic human morals and an understanding of right from wrong. I bet that there was no sorrow from the medical professionals when they told Joran's mother that she was going to have a baby. I doubt that anyone suggested aborting him. I can tell you however, that I would be much more devastated to be his mother than to be a mother of a loving child that will never be a rocket scientist and who may take a bit longer to reach milestones.

As for what is so horrible about having a child born with down syndrome, I have not figured that out yet.
My life has indeed changed dramatically since she has been born, but that is much more due to the fact that I have an additional child who requires late night feedings and diaper changes than it has anything to do with her bonus chromosome. The stories I have been told by people who know people with down syndrome who tell me how wonderful they are are much more my experience that the sorrow that the doctor suggested I would feel. I can already not fathom what life would be like without her, nor would I want to find out.

Tuesday, May 1, 2012

To Ann Arbor to see an eye specialist

10 Weeks 1 Day

I took Adaline to an eye specialist today. The person (nurse?) that did the pre-doctor questions was not super bright. She asked what Down Syndrome was and some other weird questions.

The doctor said he was not very concerned about the reason I brought her in (Retinopothy of Prematurity) since she was over 4lb at birth. They are most concerned with 1 and 2 lb babies. However, he did notice that her eyes seemed hard and he tested them and they measured a bit hard as well. Her eyes need to be dilated to do a full exam and with them having high pressure, it can be dangerous. SO.... we have to go to Ann Arbor on Monday to have her eyes dilated at the hospital where there is a team there should she have complications. The good news is that if she does indeed have Glaucoma or Cataracts, they can be surgically treated, but I worry that the test for it sounds so dangerous...