Quinn is getting better with her mood, but today was a rough day. We think she was actually constipated and was very angry most of the day until she did the deed, so to speak. Then Neal did the poop test that we have to do (to see if there was blood in her stool), and it came back positive. She will be seeing the pediatrician tomorrow anyway, so the neurologist on call said just wait until then to get it sorted out.
She started smiling more this weekend. If I say "I love you" in a wacky way, she just starts smiling and cracking up. It is a miracle to see. She also loves it when we sing to her and that brings smiles (except when in a foul mood because of constipation). I also noticed something, if you touch her and she doesn't want to be touched, she takes your hands and move them back to you. It is kind of cool to see because it is showing her attitude. It is hard to think of her as a two-year-old because she isn't doing two-year-old things, but here it shows she has the spunky attitude of a two-year-old.
Hopefully things go well tomorrow and there are no additional concerns with her poop. What great things to update you on, but at least I had pictures of Quinn in her pig tails.
Tonight Riley and I selected our little one from Reece's Rainbow that we are going to sponsor for the Christmas Angel Tree. I just got our donation ready to go out in the mail tomorrow. If you haven't checked out Reece's Rainbow, please go HERE or to the bauble on the left. Reece's Rainbow helps little ones with DS from other countries find their forever families and avoid placement in mental hospitals where they won't receive treatment and will likely die at a very young age.
Please, please check this out - and please consider making a donation or telling others about Reece's Rainbow.
I often think about what if Quinn was born in another country (funny thought I know since she would be born to me and I'm here, but just bear with me and my strange line of reasoning). BUT if she was born in one of these other countries, she probably wouldn't have received treatment for IS and she would have regressed and had a horrible life. She would probably be laying in her crib all day with nothing to do and nobody to love. It really saddens me that other little ones are going through this. It is really happening.
Just to tell you a little about our choice, Ivy. She is an at-risk girl. Hopefully she will find a family soon, otherwise she will be moved to a mental hospital where there is no turning back and leaving after that. Ivy was born September 16, 2005. She has sandy blonde hair and blue eyes. She is described as a favorite at her orphanage. She walks and does many things independently. She has several words and is very active. She is healthy, with no heart condition. She is facing the institution, and she needs to find a family soon. Riley was drawn to Ivy and thought she was very cute. We are praying that she finds her family - she deserves that.
Also check this story out - it also involves a little one found on Reece's Rainbow.
If this 11-year-old girl could do something, why can't you?
There are so many things to be thankful for this thanksgiving - our family, the security and safety of our home, the beautiful people who have helped or offered support over the last few months, and how in this economy, work keeps coming in for me. What great things to be thankful for. But as always having a child with a disability (now times two disabilities), puts a whole new spin on things. The thing that I am most thankful for today is for the great EEG that Quinn had during her appointment. The neurologist informed us that it was "almost" normal. Not sure what "almost" means and for a split second I was thinking of becoming a smart alec and say something, but I took a deep breath and considered this a blessing. We might be ok. ACTH and the drama surrounding this treatment might have actually done the trick - it might have been the best decision we made in our lives. No, scratch that, having Quinn is the best decision of our lives because without that none of the rest would be possible. I am optimistic, the neurologist is optimistic, I think Neal is optimistic, but we don't know for sure if ACTH is the trick until she stops the medication. But for now I am SO THANKFUL.
The last thing you ever want to do is to knowingly and intentionally cause your child pain. Sure there are immunization shots and stuff like that, but those don't compare to the last weeks and all this hoopla surrounding ACTH. It is a difficult thing to decide to do this to your child. Plus there are no guarantees - it might not work at all. This was one tough decision. It is a decision that parents all around the world have to make every day. But then again, there are people who don't get to make this decision because of the cost or availability. All of this just symbolizes how thankful we should be. Quinn was able to try this treatment, we were able to have the strength to get through hell, the boys are able to have their lives back right now, and it is actually working so far. Some people don't even get any or all of what we have.
In addition, I have been BLESSED to meet such wonderful people on the internet who share this experience or who don't but have grown to love Quinn. They come from the DS and/or IS community and have been a great support. This is all something to be thankful. I also have wonderful friends and family who have supported us through this through by sending loving emails, phone calls, or showing in just little ways that they care. For this I am so thankful.
The list could go on and on. I just have to say I believe that every other Thanksgiving I was superficial in how I approached this holiday. Sure I would be thankful for the "usual" things, but I didn't feel it totally in my heart. Although this has been rough (and I still hate IS, but to clarify not DS), I get the meaning of this experience. I feel thankful in my heart - deeper than I ever did before. It is just there and I know it comes directly from my beautiful girl who at this time is seizure-free.
I was looking around on youtube again (I know, I am crazy with that) and I found another clip from Following Ian. I must find out when that movie comes out! I watch the other clip (the hospital clip) over and over. Surprisingly I don't cry, I just feel connected.
I just found this on youtube. It is from a documentary of a father who has a son with DS. I am not sure of the circumstances of them being in the hospital, but I can just say that I can so relate and LOVE this video.
I didn't get a chance to watch the Sarah Palin interview on 20/20 on Friday night. I came home from work and just crashed because of the very long work week. I did get to watch it on youtube though. You can check it out there if you didn't see the interview. Out of protest for the repeated violation of person-first language, I am not going to link it here. Check it out if you want, it was pretty easy to find. I would just think that professional people in the television industry would be more conscientious about using person-first language. Oops I forgot that individuals with disabilities are discriminated against every day and they don't often get the same press and voice as other minority groups do - silly me, just how could I forget (sarcasm dripping from my fingertips as I write this).
I have mixed feelings about Palin. Even though we aren't on the same side of the fence politically, she is a kindred spirit on this journey. I always have to see whatever she has going related to her son, Trig. She is another mother who received a prenatal diagnosis just like me and because of that there is some connection or interest there. I don't expect those who don't have a child with DS to get it - how can I be drawn in this way to someone who is so politically different than me? It is just that you gravitate towards the stories of those who have something in common with your experience. This tells you that you are not alone - something I battle all the time.
Anyway, I found the article (link is below) very interesting. This story - the story of her son's diagnosis and birth was very interesting. Check it out HERE...
Here is a quote from the story and her book:
"God knew me: I was busy. Got to go-go-go. I’d always yapped about how lucky I was that my kids were all healthy over-achievers, self-sufficient. Now, I thought, I’ve got a tough job and other kids who need me. I just couldn’t imagine how I could add a baby with special needs and make it all work.
Unless He knows me better than I know myself, I thought a bit dismissively, God won’t give me a special-needs child."
Drat...she had to ruin it at the end with the violation of person-first language. But I forgive that because the message here in this part is something I can SOOOOOOOOO relate to.
Ok politically I am different from Palin, but I recognize that she is like me in this significant way. She has found strength from having a child with a disability. And for this, I honor her today.
"How do we value life? Count all the fingers and toes. Look at the head and make sure it looks like every other kid's head. Think about the brain, make sure it will work like everyone else's. Is the value of life just the sum of its parts?" (Mooney, 2007, p. 191).
I have a beautiful girl.
I value her beyond anything else. I get her value. I didn't need to go through this crap called IS to get the message.
But my heart is aching today. Right in this moment I feel pain in my heart. How can I go from peace to pain and back and forth? I thought I was in acceptance until this crappy thing called IS entered my world.
I used to think I hated DS, but DS is nothing. Nothing. Nothing. Nothing. IS is the thing that sucks. I hate it. There is no value in IS. I eventually found value in DS. My life was enriched. Now this blasted IS comes along. I want to know, what great thing is to be had from this experience?
My beautiful girl does nothing. Absolutely nothing. All day long. Tick tock, tick tock, an entire day filled with nothing - no advancement of development whatsoever. She is miserable. Will all eight weeks of ACTH be like this? But I feel stuck between a rock and a hard place because the ACTH is doing this, but the seizures need to be stopped or else worse will come along. I just don't know what I am going to do if this doesn't work. If we go through all this and those blasted seizures come back - then what? I will certainly crumble. But unfortunately I am not allowed to crumble because I have too much I am responsible for.
And now I am actually becoming jealous of people who have a child with only DS - their kids seem so advanced in their development over my beautiful, beautiful girl. I can't believe I am actually starting to feel this way. I am starting to not want to read certain things, see certain things that didn't bother me before - all because of this pain in my heart.
I feel alone. I feel like I am a parallel world even when compared to the DS world.
I hate IS. I hate it! I will never come to embrace it.
Even Mooney's quote screams IS to me - "Think about the brain, make sure it will work like everyone else's."
But there is value there. There is my beautiful, beautiful girl to whom nobody can compare.
I just have to try to have faith and survive this storm.
IS will always suck though - that will never ever ever change. I hate you IS.
In the race of life, things are slowly moving along in terms of Quinn's treatment. Another week of ACTH is almost done. Quinn still isn't very active, but the seizures do seem to be gone. Or at least I haven't seen any lately. Her day consists of crying, sitting, being held, and eating. Not much excitement going on. Very very rarely she picks up a toy and plays. Otherwise it is like focusing on time ticking on a clock. Tick, tick, tick....
Those on the flip side of us - those with typical two-year-old have new things that happen every day. They have talking, yelling, running, playing, laughing - the list goes on and on. Things move so fast. But that isn't our world. At least not this time. We had that twice before, but now we are in a different place. And strangely enough to those on the other side, we value what we have even if the experience isn't so faced-paced and flashy. I really value it this time around. The last two times with the boys I really didn't know the beauty of what I had. But oh boy, now I do. This side of the experience is a deeper and richer experience that only those who have walked in our shoes ever really truly know. I can try to explain it, but those who have been there know it in their heart in a way that words will never explain.
I just feel that if I didn't have Quinn I would be so superficial in terms of how I see life. I just think there would be so much that I just would not get. I cried my tears with the DS diagnosis and then I had to pick myself up and keep going on with life. Then I cried my tears with the IS diagnosis and now I am picking myself up yet again. Who knows what the future holds. You are not entitled to anything in this world. And yet so much is taken for granted.
So our life now is not fast-paced and flashy. We are on the slow and steady side. But that is actually a blessing. Today I am at peace with things. Tomorrow there may be another storm, so I need to enjoy the slow and steady right now.
By the way, I found this story which also shows this idea...happy tears...
I like to get up early in the mornings and do some things in the quiet of the house. Well this morning, right now, I hear Quinn screaming and yelling. Screaming is breaking the silence. This is just so draining and the sad part of it all is that I am not even feeling the brunt of it (as Neal is the one who spends more time listening to the screaming). I can only imagine how this is for him. On the positive side, we didn't see any seizures yesterday. On the negative side, Quinn has developed a bacterial infection in her throat and thrush all within the last week because her immune system is run down from the ACTH. On the positive side, we started the dose for the third week (out of hopefully eight). I wish I put stock in an aspirin company.
I have a lot on my plate right now. Just too much. My heart aches for this though - the little girl above is in a bad situation right now. This is Lera, a beautiful little girl with Down syndrome who is in an orphanage in Russia. Very very soon if she is not adopted, she will be sent to a mental institution. There will be no way she can leave then and the conditions are horrible. Despite all my own emotional stuff going on right now, I am always drawn to going to the Reece's Rainbow site and checking in on beautiful Lera. Now my heart aches because time is running out for her. At a different time, under a different circumstance, in a different country - this could be Quinn. This is just too important. I pray that someone will see this post or another post somewhere and will commit to adopting her. She deserves a better life than being in a mental institution. Please visit Reece's Rainbow HERE. Also please visit the Christmas Angel Tree project.
Here is the description of Lera on the website:
Girl, Born August 7, 2005
Russia SIGNIFICANT RISK, PLEASE ADOPT ME SOON!
Lera is a gorgeous little girl with blonde hair and blue eyes. She is 4 years old. She is quite high functioning, and doing very well. She has flat feet and a systolic heart murmur, but no major heart conditions. She is able to walk and climb, she eats by herself, dances, and understands and follows directions. She has also been transferred to the regular class, so she living and learning with her typical peers.
She will be transferred soon to a place she can not be adopted out of, so please save Lera!
This is an old photo, but it pretty much summarizes the mood today...
Quinn is in a foul mood today. The reason - you guessed it, is ACTH. Man, that drug has turned my beautiful princess into one angry girl. Yelling....yelling....more yelling. I really need aspirin. She also has no motivation to do anything except be held or yell. It is all very draining. We are supposed to go out for an early celebration of my birthday, but I am not sure I want to do that with the yelling queen. Two weeks down and six to go (hopefully).
The worst part is that she won't play like she used to. That is very hard to witness. I know now that any further gains in development will not be coming any time soon with this drug pumping through her system. Hopefully we can back on track after this is over, hopefully the seizures will be gone, and hopefully we will be left with only the DS. Funny how your perspective changes when something else gets added to the pot. DS-only is seen as a cake walk to me now.
This morning Quinn work up hysterical, but soon calmed down. I got to hold her for a really long time with her just so calm and pressing her hand against my neck. Even with all the drama and the difficulties, she is the best daughter I could have ever asked for. I love her.
Last night I came home from work to find out that I had a situation to follow upon. Aidan and Riley were looking at photos on the computer from a recent event at school. A photo came up of a little girl who happens to have a disability. Aidan said to Riley that this girl was a dork and weirdo. Deep breath. How can this be? How can one of my own children say such a thing when his little sister is sitting right there who also happens to have a disability. On the good side, Riley was outraged about this. So I had a heart-to-heart with Aidan last night about this issue - we do not make fun of those who are different, namely those who are differently-abled. We celebrate them.
Would I have had this conversation if Quinn was not in our lives?
Probably, but I would not have the passion in my heart, the pain in my eyes, and the powerful significance behind my words. I owe all that to Quinn.
Although Aidan doesn't tend to be too serious most of the time, he totally got it. I could see in his eyes he was sorry. The power of all that comes from Quinn, my little girl who is so not loving life right now and who appears to be suffering from these shots. The shots that I both love and hate - love because I hope it will bring relief, but hate because I can see that it is making her very uncomfortable. These are the same feelings I have had about that extra 21st chromosome - a love-hate relationship.
Some people will never know (or just do not want to understand) what I experience and they will never truly get what you sometimes have to do for your child. God bless the ones who do know or at least try to understand.
With all the hoopla about Quinn lately - I haven't commented on the boys. They are staying active and wrestling with each other. They are being their wild selves. Right now I have a boy (named Aidan) throwing toys down the stairs as I type this - such a great past time! I often wonder how this is for them having a sister with a disability. It definately changes their lives - hopefully for the better in so many ways. Currently it is changing their lives in terms of headaches from Quinn's periodic screaming - she is not loving the shots. I want to find a ticker to count down the days. Thankfully it will come before Christmas.
Anyway, back to the boys - what I love best about them is their distinct personalities. Riley is usually Mr. Responsible. I say usually because he is going through a thing lately with turning nine soon. Overall though he wants to know about the way of the world and loves learning. Aidan is Mr. Goofy Guy. His big thing currently is wetting down his hair and then coming out of the bathroom like he is Rico Suave. That guy is going to be something when he gets older. He is all about the ladies. Two boys who look so much alike who are so different. I love seeing them together with each other and really hope someday Quinn is in the mix with them. That would be a dream come true.
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.