Here we are the last day of the 31 for 21 challenge. The last day of Down Syndrome Awareness Month. I made it through despite what may have seen as insurmountable odds and personal challenges that I faced during this month - I did my 31 posts! Doesn't that speak to DS, the challenges that can be faced, but the idea that you will get there with your own pace (as the Creed above states).
Awareness is important. I am thankful that we have this month to build awareness for my daughter and for so many others. Awareness can help us move forward versus backward. Our backward had to do with things like institutions, eugenics, and dehumanization. We have a lot farther to go because the current treatment of individuals with disabilities in our society isn't suitable either, but at least it has improved.
Just this week I heard two students talking about the new hate crime bill that was passed. They were talking about how President Obama signed this bill that protects individuals based on gender, gender identity, and sexual orientation. They said it was about time. I agreed. I have to admit that lately I haven't watched the news, so I was just hearing about it for the first time through them. I came home and looked on the internet and saw that disability was also included. On one hand, I jumped for joy - that is great - finally disability is included!! On the other hand, I felt sad, for the students left off disability from their excitement and doesn't that just further indicate where we are with things. So we continue to need awareness. It doesn't stop at the end of October or with this last post - it should go on throughout the year.
Awareness will always have a "strange" connection for me. Quinn was born during DS Awareness Month, and ironically she was diagnosed with Infantile Spasms during Infantile Spasms Awareness Week - what is the chance of that? Does it mean I am on the right path with this awareness stuff? I think so.
The thing is despite our slow move forward in the USA in awareness, we have to be cognizant that it isn't this way in every other country of the world. That is also awareness. If Quinn was born in another country she may not live the life that she would here in the USA. Depending upon the country, she may be institutionalized (that is the norm), would be denied medical care (with her IS that would be huge), and would not feel the love from a family that she does now. Please watch the video below about Reece's Rainbow. This is a beautiful organization that helps kids with DS in other countries find their forever families and a home of their own. They have a campaign to raise money for these little ones this holiday season - you can even click on the ornament on the side of my blog to connect there. This is also about awareness because we are all family, and Quinn's brothers and sisters in other countries also need our help.
So all of this is why awareness is so important to me personally, to my little girl, and hopefully to you. Please keep passing on the idea awareness all year around. Thank you!
Even though I desperately wanted to get to the hospital to get things going earlier in the week, there was always that feeling that I wanted to be at this point - coming home. Yesterday Quinn was able to come home. If she really knew and understood about Dorothy in the Wizard of Oz, she might have clicked her sure steps together and said, "There is no place like home." It is hard to explain why I know this, but as I walked her through the door, I could just tell she was relieved to be home. Poor girl who has been through so much is finally in the place of love and acceptance for her - in her home with her hair clippies and bows, clothes, toys, photos, and love surrounding every cute inch of her.
Last night my neck and shoulders were as hard a rock from the accumulation of the stress, anger, and transitions of the week. I was able to go to bed and feel that tension lift. Today feels so much better. I actually get to have a day to spend with my family - so so awesome!!!! There is truly no place like home, especially a home with all your family there together.
I have said it before and I know I will say it again, but I have learned so much because of Quinn. I really do feel that this girl came into my life to shake me up, push me off of my equilibrium, and teach me about worlds I never knew about - Down syndrome and now Infantile Spasms. She has taught me that there is so much that people just take for granted. She has taught me the real feeling of having unconditional love for your child. She has taught me that difficult times can make you a better person. I love you Quinny and I am so happy that you are home. There is no place like our home with you in it.
These clips are of two beautiful teenagers with DS - one becoming a homecoming queen and the other a king. Happy tears!
I love to watch Top Chef - I love the thought of fine dining, although that usually isn't on our agenda with our lifestyles. But we do have something pricey in our fridge this morning! Are you thinking that it may be some fancy, delicious food product? Something so tasty that you would love to eat. What could it be? Is it food? Nope, it is four vials of ACTH. We received our delivery yesterday. At around $30,000 a pop, these vials are very very pricey. And we have four of them. There is tons o' money sitting in our fridge in the form of that medication. A medication that might not work. All that money sitting next to Riley's half drank juice pouch and Aidan's favorite condiment, ketchup. I looked at the vials sitting in our fridge this morning and couldn't help but to think we need to really clean out our fridge because that stuff is way too expensive to be sitting in that filth.
Doesn't this whole situation just make you feel like something is awry in our society that this could happen? If it wasn't for my hottsie tottsie insurance, Quinn wouldn't even get to try this treatment. A treatment that may or may not work. I really hope this works, but quite honestly I find it hard to be optimistic when at every turn we have had some crap come up out of nowhere.
What is with our society? This medication is so expensive. To receive SSI after age 18, Quinn has to have hardly any money in her name. She will need SSI or something at some point because she won't always have access to my hottsie tottsie insurance. So if you have DS, you need to be next to broke, but somehow manage to have access to very pricey treatments (that sometimes may not work). My head hurts. I think it really says something about the character of a people in how they treat those who have disabilities - and sure we here in the US have come a long way, but we have a long way to go. We don't put individuals with disabilities in institutions like we used to, but instead there is a large rate of termination for prenatal diagnosis and very expensive treatments when they are allowed very little money in their name.
On a nice, brighter side, please watch this clip of a girl named Kami - she is an inspiration:
Parenting is not the type of job for wimps. In the course of the last few days I have had so many range of emotions and had to poke my daughter twice with a needle to prove that I can do it. I have had to advocate like no other - or probably be a witch with a b for the w. Who said parenting was easy - it is the hardest job ever. But Quinn is worth it. Hopefully all of this works for her and she is able to come home soon (she is miserable in the hospital - man, does that girl hate it).
I am happy to finally report something...after getting the runaround in the am (the insurance company said that the hospital didn't give them the correct code for the tx and the hospital blamed the insurance company), we finally were approved and got here and Quinn received her first shot of ACTH. She did pretty well with the whole experience. Hopefully we will get the meds sent to our house without a hitch so we can go home on Thursday.
"Hey Karyn, do you want to play a game that will be REALLY FUN (for us) and TERRIBLY PAINFUL (for you)? Oh come one, play. What do you say Karyn, you don't want to do this - yeah right, who would? But who cares that you don't really want to play, we are going to make you anyway - just because we can and because we want to. Get this, the game we are going to play is called psychological limbo. We just want to see how low you can go."
The above is what I am going through right now. Our family a pawn in someone else's game. I am really trying to leave the expletives out of this posting - but if you are not opposed to them - you can insert a long list of them right HERE.
Here is my experience - you are going along in your life, minding your own business, no huge problems - then the limbo bar is dropped - you find out that your daughter has Down syndrome. That isn't a biggie. In fact, that helped me. Ha ha - see you didn't get me - I still kept my courage and found meaning in this. You feel triumphant - except it doesn't end there. The bar is now dropped again - "Karyn, your husband got laid off of his job." Ok I can manage that. I will just pick up extra work now and he will stay at-home with Quinn. She will be more healthy that way, get more attention, we can manage that. See we are still triumphant! Woo hoo! Now the big one - the limbo bar drops - "You know these head drops you see, those are infantile spasms and we need to do treatment as soon as possible so they don't increase and she doesn't regress" - wow this is scary. This is a major play in the psychological limbo game; I am not sure I can go that low - but for my daughter, I will. Why did that have to happen, but for Quinn I will get through. Now on to the next round - we are in the hospital last week - another drop of the bar - "Sorry, she has a cold now and we can't do the injection we planned for an hour from now." And now the worst drop of the bar of them all (mainly because of the accumulation effect) - expecting to get this treatment started yesterday and it was not.
My random thoughts on this subject, as I am having such trouble focusing given my anger, sadness, you name it -
#1 We are home. Not in the hospital. Never in my life would I have thought I would be so upset by those two short sentences, but today I am. I have rearranged my schedule like any good parent would for their child to get treatment as soon as possible. That is not an easy task given all I have going on, but I did it because I FOLLOW THROUGH, AM RESPONSIBLE, AM COMPETENT, AND CARE. Unfortunately I can't say that others do that in their respective jobs. What is the hold up, you ask? Well the insurance has pre-approved the hospital stay, but not the ACTH treatment. Why would we need to go to the hospital if it wasn't for the ACTH? Sorry, but we aren't people who just like to hang out in hospitals for vacations. That is the most stupid thing I have ever heard.
#2 I have good insurance. I don't have crappy insurance - so why the heck is this happening? In fact, I am a state employee so I have the benefits that the conservative radio talk show hosts in our area go on and on about. I have heard them on the radio talking about how it is not fair that state employees have these type of benefits because the people in the private sector do not get them. IF MY BENEFITS ARE SO HOTTSIE TOTTSIE (see so far I am doing great not swearing) - then why the heck is this not approved already???!!!!
#3 Last week they went up to an hour before her injection to decide that they weren't going to do it because of Quinn's cough. Gee there wasn't pre-approval then, and they were going to do it. Why now all this hub bub (again avoiding swearing) about pre-approval? I asked that - the response I get - "Oh that is a good question, I don't have an answer." What? You expect me to be a sheep don't you and not ask a single question - you expect me to just go along with what you say and nod my head. Well you aren't going to get that here.
#4 I find out that the paperwork was faxed over for the pre-approval on Friday. Why Friday? You sent us home on Wednesday - remember I was the one with tears in my eyes who you assured that everything would be ok and set up for Monday? Recap - you told me on WEDNESDAY that it will be ALL SET UP for MONDAY (gee that day already passed because now it is Tuesday). Why wasn't this paperwork faxed on Wednesday? You know what, let's back up, why wasn't it faxed on MONDAY, OCTOBER 19 when you knew that this was the treatment we were going to do and planned to do up to an hour before it was planned to start.
#5 After the delay with ACTH last week, I asked the neurologist about the other option, Vigabitrin. He said that no, he still would rather go with the ACTH because it has better outcome with DS, and besides it would take three to five days to get in the Vigabitrin and we have to get this going as soon as possible. OK is it just me noticing that there is now a stupid delay that takes us out even longer than the three to five days? What about the immediacy of treatment? Was I the only one paying attention when that was said? I prefer to try the ACTH first, but I want my daughter to get some treatment. I think she is noticing the head drops now. She looked at me all concerned after having one last night.
#6 This was supposed to be a good month. This is the month celebrating Quinn's birth. This is the month of Down Syndrome Awareness. I was supposed to have beautiful posts and now it turned into these angry ranting posts. I am so sorry. I wouldn't want to read this blog if it was not happening to me. I would find it so depressing. I would want to hear nice, happy things - not this crap. But I have been thrown into this crappy game that I didn't want to play. I don't want to be right in this position in psychological limbo that I am right now. I don't want to be so low. I just want my beautiful baby girl to get what she needs. I want others to care something about this situation and rectify it. But writing these crazy, ranting postings is the only thing that is keeping me together right now. Maybe someday I can go back to the posts I wanted to do - the ones that are more positive - and maybe you will read them if I don't scare you off with this crap first.
So this morning on the agenda is more angry phone calls - to the insurance company, to the nurse practitioner (who didn't fax the paperwork to the insurance company until Friday and quite personally is not my friend right now because I put a lot of blame on her), to the neurologist to alert him of what his people have done to mess up this situation, and to the pediatrician just hoping she could maybe contact someone and get something to happen.
Because this post is just so negative, here is a clip about Dreams for individuals with Down syndrome. I watch this video with tears in my eyes hoping that Quinn can someday be seizure-free and have these dreams - that is all I want. See the video HERE. See I made it through without one swear word - a big accomplishment for me right now.
We are to go back to the hospital today. Quinn still has a little cold, so I am not sure what is going to happen. She is significantly better than last week though. I am just tired. This is all very draining. What if this one gets called off and then we have to go back for a third try? I don't even want to think about that possibility, but it keeps coming into my head. I guess if we move ahead with this, Quinn will get her shot at 8pm tonight. Please pray for her.
Yesterday I took some time to myself to go scrapbooking. It was something I needed - to just focus on Quinny's photos and take some time off. Two things happened though - there was this speaker during the scrapbooking event on the Make-A-Wish Foundation (they have product from Make-A-Wish for donations that the scrapbooking place is trying to sell). I heard a mother's story of her child having cancer - she spoke of the fear, the hospital, how their life was disrupted. Although I am not experiencing that exactly, I think I was the closest person in the room to knowing how this may go. I kept thinking about that and fighting back tears. And then later I heard two tables down laughing and laughing. Someone asked them what they were laughing at - and they said oh some special education student they know. Great. Then one lady is working on something and not getting it and said, oh I am like the special ed student and laughs. Double great. I believe these people are teachers. Triple great. Why does this crap have to happen? Here I am looking at photos of my beautiful little girl and these people have to say crap like that. Will that ever end? Probably not. At least I recognize the insensitivity of that now. Probably before Quinn I would have been annoyed by comments like that, but would not really know how that can truly hurt.
I just hope today goes well. I found this video this morning. I have to tell myself to find the meaning in this experience - that is pretty much the message of this video too.
There is this song that I have heard many times when in the car with the boys. They love to listen to the kids stations on the satellite radio. And this song is on there quite regularly Here it is (it is just a goofy song)...
There is one part to the song that I tend to think about in certain situations. It is the title of this post, "Freeze, wait for it." It signifies to me those moments when you KNOW something is coming. Like today, knowing that tomorrow we are to go into the hospital. Or something that happened twice this week - having a conversation about Quinn's situation and then...freeze, wait for it...the fear look, the comment, the whatever it is that shows that I just scared the person half to death by the reality of my situation.
I am quite surprised with who this happens with - people just like me - my age, working in the same or a similar career as I do, just like me. Maybe they feel the most vulnerable because if it is happening to me, it could happen or could have happened to them. One person this week had the terrified look on their face. The "Oh my God, can that also happen to me?" look. I should note that the person did ask about the situation. I told them and then... freeze, wait for it...the look and then... freeze, wait for it...the comment "Well I will tell you about my experience with the mentally retarded." Oh that is a nice touch. An attempt to distance yourself from them, they are those "mentally retarded" people after all - not my daughter, my sons' sister, a person you love and your heart is breaking for because she has to go through this medical crap that comes from something other than DS.
The second conversation was going well, in fact very well, I almost didn't have my freeze, wait for it moment, but still you better....freeze, wait for it... because you never know. It can come out of nowhere and slap you in the face when you never realized it would come. That is the problem with this, you can become defensive. Then it came...the eventual comment/advice came that "Quinn, unlike normal kids, should receive".... Wow - Quinn isn't normal - that would make her abnormal, then in response I am abnormal because she came from my body. And then that would make my whole entire family abnormal. We are just an abnormal brood of people. I would rather think of us as your typical family who is going through a struggle - we all have struggles, challenges, moments when we are tested. To me, that is normal, not abnormal. The people who never have these things may be considered abnormal.
It doesn't happen 100% of the time. And I know people just don't know what to say. They are well meaning and just don't know. I don't hate them. I can put these comments behind me and still recognize they care, but I hate that these comments effect me - that I have developed this freeze, wait for it method.
I also want to mention that there are also great moments where people just look at you, listen to you, tell you they care, tell you they are there for you, offer to help you in certain ways, are just with you - but it is these freeze, wait for it moments that get you - they seem to get you the most when you are down. Ironically it is called Down syndrome, after Dr. Langdon Down. I suppose people who don't know about where the name comes from may associate the syndrome as ripping your life apart and making you down and depressed. But in actuality it is not the DS that does that, it is more of society's view of disabilities that does that. It is the freeze wait for it moments that does that. Down syndrome actually has been one of the better parts of my life.
Here is a video I found this morning with some cute kids and adults with DS. Enjoy.
I found this youtube video this morning. It is just beautiful. One of the best parts is this song (lyrics below). Without Quinn, how did I get through? I love her so much and need her in my life. I am scared about next week, but have to do what I have to do to get her the treatment she needs.
My Baby lyrics
Tiny hands, yes that's you And all you show, it's simply true I smell your breath, It makes me cry I wonder how, I've lived my life
[Chorus:] 'Cause without you, How did I get through All of my days, without you? Now living with you, See everything's true My baby it's you My baby, my baby, my baby
With no words at all, So tiny and small In love I fall, So deep, so deep My precious love, Sent from above My baby boo, God I thank you, God I thank you
'Cause without you, How did I get through (How'd I get through) All of my days, without you? Now living with you, See everything's true My baby it's you (My baby it's you) My baby, my baby, my baby
Not much profound to say today. I am just more random than anything. I am very tired from this emotional roller coaster that got me absolutely nowhere - the one that I must start again next week. I get to go back to work today and probably get 50 million questions about where I was. I also had the joy of checking my voicemail and hearing a forwarded message from ANOTHER HELPING PROFESSIONAL where they used the r-word. That was nice (sarcastically said). There is always something. It gets draining sometimes because you feel like you are walking in place and getting nowhere.
Lately I feel like a ping pong - being bounced around - back and forth between highs and lows of this journey. Ok high - at least we found out what Quinn's dx is (IS), learn they think she has a good prognosis because of the late onset, DS, lack of regression of skills, and lack of clustering. Then low - sent away with no tx, please tell us if you notice any regression now (what, do you expect it in the next five days?), come back later "hopefully" we can do it again (hopefully?). I know they had to do what they had to do, but I was psychologically ready then and now I have to start over the process. Is this a sign of something? Or is it just the way it is?
Random thought - why is it that DS puts you at risk for things (like cancer, IS) and then actually helps your prognosis and how you respond to tx? This is puzzling. The extra chromosome hurts you and then helps you - like a ping pong - which direction is it? Hit one direction and then the other. You become sad about the DS, upset at the DS that it put your child at risk for these things, but then relieved about the DS because it helps you in so many ways. I can't figure it out. It isn't for figuring out I guess.
Since I didn't post a clip yesterday, I posted two today. The first is about the r-word and the second is a clip about a book I intend to read and has been sitting on my shelf forever - maybe Christmas break is the time to read it.
I am not doing so well right now. We were progressing towards Quinn's first shot of ACTH - even did the little meeting with the nurse on the procedure. It was going to be at 7 pm yesterday. Then at 6 pm they halted the thing because Quinn developed a cold. They kept us overnight and then sent us home today. We have to go back on Monday. Quinn went through all that on her birthday for nothing. Absolutely nothing. She was put through hell and back and now has to repeat it all next week. We have to go back because we need this, but it all sucks right now. Now all I can do is sit and watch the head drops and think to myself, "man, they seem to have increased." I am angry. Not at the hospital staff, I know they were just doing their job - I am just angry in general. I have this to juggle, along with two other kids and four jobs - yep four jobs and a schedule you wouldn't believe. I am just so angry. Right now anger is better than breaking down. But I do love Quinn and will do what I have to for her.
Happy Birthday Beautiful Quinn! I am so sorry that you have to be in the hospital on your birthday my beautiful beautiful girl. At least you had your birthday party before all of this had to happen (love the photos by the way). Don't worry, we will get you out of the hospital just as soon as we can. But baby girl, we have to do this - we just have to get those seizures to stop. So far you have been lucky, they haven't made you lose what you have learned. We have to tough this out right now and squash them right now. All the pain that we go through today is for you to have so many great great days in the future. You will have great days in the future. Plus I am learning just what a little fighter you are. Boy do you love yelling at people trying to hook you up to things. Maybe you are more like me than I realized :>) I love you baby girl. You are the best daughter I could have ever have. You are my princess. You are my everything.
Check out the story of these cheerleaders - maybe someday Quinn can be like them. Go HERE.
Please keep praying for Quinn. Her video eeg will be complete this morning and then she will get her MRI. She will likely start treatment today.
Here it is, the day we meet with the neurologist. Thank you to everyone who called, emailed, commented, private messaged, hugged, etc. Neal and I have our list of questions prepared, and I am getting ready for a very long day. We have my mom as back-up to pick up the boys from school if we need her to. I went to the doctor yesterday for myself and got my own medication for my toe in case it flares up more. I think I covered everything.
I lost it a few times yesterday, especially in church. Not sure why there, but I sure lost it. Oh well you have to do that every once in a while. It was a release.
I want to go back to my absolute favorite song today. It always comforts me. And I need comforting today. This song is Phil Davidson's Georgia's Smile. I love love love it. The part that always speaks to me is...
You think you’ve got this all worked out until something knocks you off your feet. You’ll find yourself all adrift where these two currents meet. And you think you’ve been cursed. And you ask the big questions why. But I think I’ve been blessed, Georgia when you smile.
This couldn't be more true right now - I thought I had it all worked out with DS and now something (IS) is knocking me off my feet. But we will get through this.
Enjoy the song. Please think about and pray for Quinn today. Thanks.
Two years ago today I was pregnant with Quinn. This is the anniversary of the day that I had a breakdown when I failed a biophysical profile and had to do a non-stress test and had to cancel my lunch plans – a lunch I was looking forward to as I was working nonstop supporting my family at the time. Strange to remember such a day, I know. But it was a big moment for me. I started crying in front of the nurse. She said, “Oh your baby will be ok.” I told her I KNOW Quinn will be fine, I, myself, was the one I was worried about.
I have to get back to what I told the nurse that day. Quinn will be fine. I just don't know about myself with all of this, but I have to have faith that I will get through it all.
Actually I am surprised that two years later some things have changed, but some things haven't. I see my beautiful girl now - I hold her in my arms and know she is the best thing I have in my life. But I am still working nonstop. I am still stressed (probably would fail a non-stress test today). And I get the joy of seeing a doctor today (my toe is swelled up). Once again I am anticipating something big related to Quinn. All two years later.
This has been the longest five days of my life. Seeing the head bobs. Knowing what they are. Recognizing that they are more frequent. Thinking how can something that looks so minor be so major.
But I have to walk by faith.
I found the second clip the other day. Jeremy Camp talks about faith (how fitting) and what having a brother with DS means for him (how doubly fitting). Then I began exploring the music of Jeremy Camp and I found the song, Walk by Faith (the first clip). I thought that it so fits our journey now. This will start tomorrow and I need to walk by faith. First in order to do this I need to get my toe fixed, but either way I will do what I have to do for my baby girl Quinn. I love you girl more than you will ever ever know. You are worth anything I have to go through to have you in my life.
I was looking at Quinn last night and thinking maybe she isn't doing so bad with this IS thing. What is the big hub-bub? She was smiling, playing, moving around. And then there was another head drop. I haven't noticed it over time, but they are happening more and more. You used to be able to go a while before you would see them and I think I saw two within 10 minutes of one another last night. I so want to chicken out on this and just be in denial, but I can't. I won't. Monday will come and big decisions will be made. All for Quinn.
Last night Neal was talking about what he got on Quinn's birthday cake. He said he was thinking Elmo, but went with a rainbow. He then said that he got a rainbow because seeing a rainbow is a gift from God and Quinn is also a gift from God. So true. We just sat there a moment. No tears. Just there together, on the same page with the reality of that statement. Despite all the tears I have cried because of the dx of DS and now IS, Quinn is a gift from God. The tears and the worry and the pain from things going a different direction than I wanted or intended, makes her even more of a gift. She is the best daughter I could ever have and the thing is that I stupidly thought I wanted something else in my life. I guess I was shown the truth.
Quinn's birthday party is today. This one will always be etched in my mind. She had a birthday party right in the midst of all this drama. She will get her hair done in the morning and I think I will dress her up because this girl deserves to celebrate and will be beautiful doing it. She deserves nothing but the best.
Please watch this clip of a documentary which will be coming out. It is called I'm Down with You and is about a photography project. Such a beautiful message and beautiful photos. I am down with you, Quinn. Forever and always.
Wow things have taken quite a turn in my postings as of late - and this has to happen right in the middle of DS Awareness Month, where I will be posting daily. Figures.
I first want to say a big thank you to those of you who have reached out to us either here or elsewhere (downsyn, email). I really appreciate it. It is nice to feel the support.
I have been thinking a lot about Quinn (obviously - wow that is a duh statement). This morning before I came down to the computer to do my usual routine before rushing off to work, I stopped and watched Quinn sleeping for a while. Last night I held her in my arms long after she fell asleep. I just kissed her over and over again. I just love her so much. My perfect girl (and she is perfect) has to go through this crap. It stinks. As I was watching Quinn sleep, I thought about the materials I had read about Infantile Spasms (IS), that the episodes rarely occur during sleep. I thought how great that is for Quinn - she is truly sleeping peacefully. Unfortunately though the episodes tend to be more common in the morning or when they wake up from naps - I never really thought about that, but that probably is when we see more of the stuff happening...
It is like this, sometimes Quinn is very active, present, smiling - 100% there. This happened when I came home from work last night. She was moving around (scooting) and smiling and playing. My heart just filled up with happiness. And then other times she has the head drops (head goes down and arms go out) and she stares off into space. It is hard to explain, but it is like a fog sets over her - even her eyes are not clear. God how I hate the fog.
I feel like I am in a fog now too. Just going through the motions until the next big step.
One of the fall outs of IS is a cognitive disability (or that term in the DSM that needs to be revised mental retardation). I was reading that and my twisted mind wanted to laugh hysterically. Well I already knew that was an issue, but I guess now maybe Quinn won't be the superstar of DS like some others - or maybe she will be because the little fighter has those moments of clarity out of the fog and some kids with IS don't. Oh well, none of that matters right now anyway. I'm in the fog and only the fog matters right now. I have to get out of the fog.
Two years ago this upcoming Tuesday Quinn was born. I did what I had to do when we got the prenatal dx. I stayed strong, went to the tons of appointments, cried my tears, but did what I had to do. This time is no different. I will have to learn how to inject my daughter with ACTH if needed. She will likely fight it. She will hate it. But I have to do it. She can't have these seizures keeping her in the fog. She deserves more. She deserves to be in those clear moments. We will have to likely spend her birthday in the hospital, but we will do this because we love her and no matter what she is our daughter and worth it. Our daughter deserves to be outside of the fog. Luckily Quinn will get her birthday party tomorrow before the "fun" starts. Thankfully we planned it for that day - who knew all this was going to happen?
That is my story. I will post more as more unfolds, but between now and Monday there will be no new developments except in my processing of the situation. Here is another story about DS. Bottom line, it is about parents loving their kids no matter what - doing whatever they have to do to give their kids opportunities.
My beautiful girl will be two in five days. She has no heart issues, no duodenal atresia, none of that. We have been lucky. But I have been perpetually waiting for the other shoe to drop and now it has. She has infantile spasms. My baby girl has been seizuring right before my very eyes for who knows how long. No wonder she zones out. No wonder she doesn't crawl. No wonder she seems so very behind other kids with DS her age. I tried to ignore that there would be any problem or negative outcome to this neurology appointment, but here it is - hitting me right in the face. Can you imagine what this is like for her day after day? She has a seizure, nobody can see it, but internally it has been impacting her. I have pain in my heart like you wouldn't believe. The shoe has dropped. Boy has it dropped. I honest to God thought it was going to be autism (but maybe it still is)because of how she zones out and just doesn't respond. Maybe this is the answer to what she has been doing. Or maybe it is not. There could be a third shoe too. I just don't know. I really don't have anything profound to say or do except cry tears as I type this. Then I have to suck this up and go on with my day - pretty much like how it was when we received the DS dx. Cry for a bit and then go off and attend to other people's problems. It is what it is. Sorry to be so uninspiring today. I will get back to that later. Because my post is so depressing, I need to counter that with something happy. Please check out this video about dancers with DS. I know it helped me this morning when I watched it.
So I previously talked about worries, but there are also dreams. Dreams of Quinn's future life - dreams of what it will be for individuals with Down syndrome in the future. Things can only get better and better. Quinn will learn new things - become stronger - grow - and get more beautiful each day.
In a little less than a week she will be two years old. Hard to believe that that she is getting that old already. It won't be long until she could become a young athlete for the Special Olympics. Another dream - Quinn becoming involved in things that she loves! This week I was watching a show about a mom with a young adult child who was struggling with drug addiction. Athough it is a different experience, a lot of what she had to say was similar to my concerns - feeling different from other typical parents, not relating to conversations about what their children are doing, and feeling more concern and having more responsibility that what is typical for someone the child's age. Lastly she said that she lost the ability to dream. To me, it is important not to stop dreaming just because Quinn has DS. I need to dream. Just because your child has a disability doesn't mean you can't dream. In fact, it becomes all the more important. Check out this very cool video - it relates, trust me :>)
Also don't forget to vote for Barry's aha moment (previously posted) by October 15!
If you are voting for Barry's Aha Moment (previous post is HERE) - please do so by October 15. That is when the possible candidates for the tv commercial is narrowed! We have to get Barry's Aha Moment on TV!!!
This is why I LOVE blogging! I find new things out every day! Thank you so much to email@example.com for leaving me a comment about this. Please everyone go to HERE (there is also a link below) and watch and vote for Barry's aha moment! It is like mine - and if you are a parent of a child with Down Syndrome, probably like your aha moment too! It is about the clarity you get when you have a child with Down syndrome. You begin to realize what is and is not important. You see what strength truly is. You truly see perfection. It can be all these things.
Please go to the link and do this. Jack tells me that the top clips in the contest will be aha moment TV commercials next year. How timely for Down Syndrome Awareness Month - we need to get this beautiful message in the media! Thanks so much!
Two years ago, I was waiting for my baby girl to be born. I had to go to appointment after appointment and the whole process was weighing on me. Plus she was still in the breech position - darn it. This was horrible news. I was preparing myself to get the baby turned - my doctor and I had devised a perfect plan (only to find that Quinn beat us to it and came early). It had been a heck of a journey from 18 weeks to 36 (when she ended up being born). Two years ago I had no idea just how beautiful my girl would be. I had no idea how much she would change me. I had no idea just how much I would love her. Now I do.
This clip I just found this morning. There are so many similarities between our story and this one...
There is a HBO miniseries that I love called The Corner. It is based upon a book about the true story of some individuals living in a drug infested area in Baltimore. One of the main characters, Fran, decides to go into drug treatment. She throws one last party the night before she goes into treatment. Fran's brother, Scoogie, who has been clean for a number of years, stops by the party to encourage Fran to follow through with her treatment. Upon being pressured by his other siblings, he performs a skit called Shine about a Black man on the Titanic as it is sinking into the ocean. There is a very powerful moment when Scoogie looks directly at Fran and says "You better get into that water and swim like me."
"Get into the water and swim like me" means taking on this challenge. Don't just stand by doing nothing. Do something. Join us in the water. I was thinking about this just the other day when I heard about Karen Gaffney accomplishing yet another swimming feat just in time for Down Syndrome Awareness Month. Karen Gaffney is certainly in that water asking us to follow her. Robert Pio Hajjar is in there too. Christopher Burke too. And so many others. And then there are the parents like John C. McGinley and all the lovely parents of the blogs I read. And then there are siblings too like Soeren Palumbo.
Just a few days short of two years ago, I was called into the water upon the birth of my beautiful baby girl Quinn. Even before that, I received an invitation by way of an amniocentesis result. These things were all calling me into that water. So I jumped in, what choice did I have? It has been a difficult swim and at times I feel overwhelmed like I am going to go under, but overall it has been a powerful experience that I wouldn't trade for the world. It is truly an honor to be in the water with these beautiful people.
This is my 200th post - wow, that many already. I really appreciate my readers. I do this for my self-care on this journey, but if others find it interesting - that rocks! Thank you.
I have a video today, but you will have to click on the link below. Be sure to watch about Karen Gaffney's recent accomplishment. It is inspirational.
Here is the conclusion of the documentary My Favorite Child. It is very powerful - a beautiful family's story of love. Looking at this, one can think how far we have come. That is true to an extent. Institutions in the USA are not the norm anymore. We have early intervention. We even have a Down Syndrome Awareness Month, Buddy and Awareness Walks, and 31 for 21 blogging challenges. Karen Gaffney makes the news for great accomplishments (more about that later). But I can't help but to think how far we have to go. Sorry, maybe it is because of my fears and worries for my daughter. It is all about perspective - I am new to this journey, so I am more about this side of things maybe.
As you know, for this month I am trying to include a clip with every post to give an additional voice to DS Awareness. I know I am obsessed with these things. Well to do this, I have been searching on the internet daily for any new or old clips out there. This in and of itself is an intense experience. For every awesome clip or stories related to DS you find, there are tons of truly disturbing, insensitive clips. And then don't even get me started on the comment sections. Most of the time you can tell from the title of the clip how it is going to go, but not always..... You open it up. And then it hits you like a slap in the face.
The My Favorite Child documentary talks about the importance of looking at an individual with DS as a person - sure the institutions are not as common anymore and we made progress there - but sometimes I wonder if we have really made progress in looking at individuals with developmental disabilities and truly seeing the person there. We may not have the obvious things anymore - the huge looming buildings, but we sure do have a lot of subtle things. So many people turn their head and don't even look at the problems out there. This is why hearing our story and experience is so very important.
The only thing I can say today is that Down syndrome inspires me. It inspires me to express myself (even my anger), learn, and grow as a new person. Who would have thought that an extra chromosome would have that impact? Here is another person who is inspired to write a poem about his child -
Quinny absolutely loves her daddy. He is her life. She has the honor of spending all day with him, and she has the time of her life. He takes her wherever she needs to go, works with her on her walking, talking, eating, etc. She is one lucky little girl to have the daddy that she does.
All of this comes from a man who was so uncertain when the diagnosis was given. But when you watch him interact with Quinntamino (what he calls her) now, that uncertainty isn't visible at all. Where did it go? Well just like me I think he sees that Quinn is a blessing and an essential member of our family. He does sometimes feel down about the DS, but overall I don't know of another daddy who loves his little girl the way he does.
Thanks Neal for all you do for Quinn!
Here is another story of a daddy. Be sure to get out the tissue.
I really like these PSAs – they are all about awareness and the need for change (how fitting that I found them just a moment ago on Youtube in the month of October, DS Awareness month). It is about time that our society changes the way they treat those with developmental disabilities. Sure we have made progress in this country in at least reducing the number in institutions (but you better take a gander at Reece’s Rainbow if you live in denial that this doesn’t exist elsewhere).
Disability Rights is the civil rights moment of our generation. Unfortunately it isn’t as well publicized as other movements. It isn’t as popular. As flashy. None of those things. It is just what it is – important and relevant. A while ago I talked to one of my favorite interns about how some people react to knowing that you are the parent of a child with developmental disabilities – how they seem to want to shy away from the topic, get all nervous, don’t seem to know what to say. You can literally see that frightened look on some these people’s faces – it seems to be saying to you, “Please can’t we just get off of this topic?” This intern, she also had a child with a disability, although the disability is different, and we were discussing why people react this way. She said the greatest thing to me – which is why she is one of my favorites – she said, “Karyn, it is because having a child with a disability can touch anyone and it scares them.” I couldn’t see the obvious right before my face. My life is literally someone else’s worst nightmare. Nice. Really, trust me, my life is not that bad. It has been enriched in so many ways I can’t count them. But the fact remains that all of this is random and it scares the stuff out of quite a few people. If you read my scrapbook (my reflection on my own life), then you know that was my mom’s fear too when she was pregnant with me - she was worried that I would be developmentally disabled. The fear. It could happen to anyone who has a child. No one is immune to this possibility.
I can honestly say that if it wasn’t for Quinn, I would be included in this insensitive lot. God gave me something in the way of an extra chromosome in every cell of a beautiful beautiful little girl that increased my awareness, empathy, and introduced me to a whole new world. It’s time we all get on this whether you have a child with a disability or not. It is time for a change.
One thing that has become stronger with Quinn in my life is my faith. Yesterday in church the sermon centered on Rebekah and Isaac and what faith Rebekah had to go off to marry Isaac given only this feeling she had that she was called to do this. She entered a world of the unknown all on faith. Oh boy do I know about the unknown. Big question marks began to surround me while pregnant with Quinn. Each appointment we tried to find out some of that unknown - did she have a heart defect, stomach issues, etc? For a time they were all unknown. There are still unknown things - where will her functioning be at (I laugh internally when someone asks me that, how the heck am I supposed to know), will she develop some scary health problems that children with DS have a higher risk of, and just what will be the outcome of her appointment next week with the neurologist? But I can't dwell there. I have to have faith that things will be how they are meant to be. I am blessed to have what I have. I only take things one step at a time - love the fact that Quinn is in my life - and sit there in each sermon feeling the words right in my heart.
Just a few days ago there was a mother on my online forum (downsyn) who said that her beautiful baby daughter passed away after heart surgery. She had a prenatal diagnosis as I did, but at the same time she found out that her daughter had significant heart problems. She continued her pregnancy, gave birth to her beautiful daughter, loved her, and then faced this heart surgery only to have the most horrible outcome. My own heart breaks because of this. If this isn't faith what possibly could it be? On one hand I can't imagine going through this, but on the other I can. A fine line separates us - for it could have easily been me. Sorry, but to me Rebekah's leap of faith is nothing in comparison to this mother's.
Here is a clip of a little guy with DS (age 5) reading scripture in church.
It started out as one of the most difficult parts - recognizing the delays in Quinn's developmental milestones. I would focus on them, cry about them, unsuccessfully pretend they didn't exist, worry when she would attain them and then worry about what that means long-term now that she seems delayed in them even compared to her peers who have DS. It was all really just too much.
Now, with faith, I try to let go of those painful feelings the best I can because I love my baby girl and I really have very limited control over when she gets things. I love her for who she is - not for who I wish her to be; I love her unconditionally. I really learned that concept now. A lot of people understand unconditionally love on a cognitive level, but they haven't been tested in their heart. Besides in my heart I want to have another baby (foolish I know because my life is so crazy now), but that just won't be in the cards. So this is what I know, I get to keep my baby girl for longer. Why rush life? Why not enjoy what you have in this moment. Maybe Quinn has this purpose for me - recognize what you have, enjoy it while it is going on, and have patience.
Quinn is blessed. She lives in this country where she receives services and the care she needs. She attends private therapy with wonderful therapists. She will get there when she gets there with her milestones. Watch this clip about another little girl in another country. Sometimes we just think about DS here in the US, but it is all around the world. This clip is from a documentary that is about children with special needs and the care they need.
We had a prenatal diagnosis with Quinn. I really didn't expect it. It really came out of nowhere. I have talked about this before, but it came over the telephone waking me up from a nap. The words "I'm sorry but the amnio showed that the baby has Down syndrome." At the time I really thought it was the worst thing possible that could have happened to us. I thought my reality was changing for the worst. The floor was sliding out beneath my feet. The thing is that my reality did indeed change. But it became better. I just didn't know it would go that direction at that time - if only I had known. Quinn made our world richer and better. We just had to work through those raw emotions at the time.
The doctors didn't push termination with me - that is a stereotype that they ALL do. Some can and will, but 100% of the doctors are not that way. My doctors were very sensitive. But they didn't really talk much about DS either. They didn't really have a lot of experience in this area themselves - maybe professional experience with delivery, but not the emotional experience of having a child with a disability. I had to educate myself by reading, meeting others, hearing stories. I took on this challenge and my life was made better by it. I needed to hear the beautiful, loving stories of mothers and fathers.
Prenatal diagnosis is not necessarily bad or evil. There is a huge termination rate - way too large and shocking. But all of us receiving prenatal diagnoses aren't about to terminate. It never entered my mind. Sometimes I read something online that really has the flavor of how horrible prenatal diagnosis is. But it doesn't really have to be that way. For me, I was able to prepare and getting my mind in the right spot so that the day of Quinn's birth could be about celebration and love and not bad news. Things would have been radically different if we found out at birth. But for us, her birth was a great day and Down syndrome wasn't mentioned - just how beautiful and healthy she was. Everyone is different and some say that finding out postnatally is the way for them. I just know for me, a prenatal diagnosis was the best thing that could have happened.
What I do think needs to change is the image of those with Down syndrome - how do doctors talk about the diagnosis, how does the media portray those with DS, are families with a child with DS seen as being active and happy. We need to step up and make the DS seen, heard, and known. We need others to see it can actually enrich and strength your life. Our reactions are based on our perception of things - and my reaction was based on my bias against disabilities founded in how our society views disabilities and the limited experiences I had with individuals with disabilities at that time in my life.
Two years ago at this very time I was waiting for my beautiful girl to be born, not knowing - not expecting - that she would have this impact on me. Quinn has shown me things I would have never ever seen without her. Thankfully I have her in my life.
Here is another family's story and they talk about these issues surrounding diagnosis.
I want to bring you the stories of some of the most beautiful, wonderful people in the world this month. Let's celebrate - it is October, Down Syndrome Awareness Month (which also happens to be Quinn's birthday month - so fitting!!!). Hope you enjoy the first installment! We are blessed to have people like this in the world.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.