We’ve always said that when Taylor runs, she lopes like a camel. Her sister Brandy sent me the perfect video to show just how Taylor runs.
Please enjoy! I know I’ve laughed & laughed & I’m laughing now as I type this.
Sometimes it is hard having an older “child” with special needs. I will admit that there are times when I wish I could turn back the clock. Granted, they are few and far between, but if I’m honest, I do have them.
There are things that are easier when she was smaller. She still has the mind of a toddler in a 6 foot tall frame. She loves to swing, but the trend today is to take out all the old style swings and put in big play structures. I watch her struggle to figure out how to play in a world that is too small for her. It breaks my heart.
When we would go to the grocery store, so many would stop and say how cute she is. Now, it’s mostly stares of disgust because she still drools.
No, it’s not all bad. We live in a small town and shop at the same Safeway. All of the people who work there know and love Taylor. There are cashiers that tell me she lights up their day with her smile when she comes through their line. I love those people.
I’m not trying to write a whiney post but these are just things that are on my heart lately. I used to belong to an online support group for Trisomy 9p. I eventually stopped posting and left the group because there was just no connection with the other parents for me.
Taylor is one of the oldest, still living, T9p kids. She also has a lot of medical issues. She was also one of the most profoundly developmentally delayed. The parents of the younger kids didn’t want to think of their kids being as affected as Taylor. I understand that perfectly. They didn’t want to hear about seizures & cancer.
Another mother who’s daughter is Taylor’s age also left the group. She felt the same. The other big issue is school and/or programs. Taylor loved school but she can only go until she turned 21. Then they graduate them. Most of her class went on to work programs. That’s not an option for Taylor. There are really no options for the profoundly affected “kids”.
Right now, Taylor is bored. She wants so badly to DO something but because we run a business from home, it’s not possible. She does get her respite care but right now, that’s a problem. Not because of her care providers…they are awesome people. But because of the brokerage firm that handles money & paperwork. I’m switching firms so hopefully, this will resolve the problems.
I know this sounds like a complaint blog and I apologize. I just needed to get it out. I guess I just want to help other parents because I’ve been through so much in the past 22 years. I just never know if the parents want to hear what I have to say.
Eh, I definitely sound whiney now. I’ll take a cue from my happy-go-lucky child and just smile
An older picture, but one of my favorites. She’s so stinkin’ cute!
This picture is an older one, but it brought back some awesome memories and I needed that. *laughs*
Okay, so normally, I don’t post about myself unless it relates to Taylor, but I suppose I need to change that up a little. What affects me, affects her.
So, last week I spent some time in the hospital for pneumonia. Needless to say, I’m still feeling like crap but trying to do that at home. I had to make a repeat visit to the ER on Friday for IV steroids, but got to come home.
Is it just me or is it all us special needs moms…I tend to take my health way less seriously than I do Taylor’s and that isn’t really the right way to be. If I’m not healthy, I can’t take care of her but sometimes that just doesn’t translate into practicality. Please tell me I’m not the only one! *laughs*
Taylor went and spent some time with her care providers while I was inpatient. She enjoyed that. They have a dog. See…Taylor is the ‘dog whisperer”.
This is 1 of the pics she sent via text to my phone while I was in the hospital.
Apparently Taylor doesn’t like to sleep at their house. She’s too afraid of missing something. She is up and down all night. When she comes home, she ends up taking a several hour nap and/or going to bed at 7pm then waking up around 10am. Either way, it works for us and they don’t seem to mind. I love these people!!!
As a side note, I hate, hate, hate the brokerage service that we have to deal with for Taylor to get respite. They are being *&^%$heads. But I’m changing firms, so hopefully, it will work out.
Taylor got a new haircut yesterday. I think she looks cute. Also, no more struggling with her to put it in a ponytail first thing in the morning so she doesn’t have food in it. *yuck*
I realize that it’s a little odd to take pictures of a new haircut while the person is sitting in the bathroom floor. However, this is Taylor’s “office”. Every day, she takes her work equipment, aka bucket of tub toys & mp3 player, and heads off to work.
She then proceeds to throw said toys over the shower curtain and into the tub. That is the sound we get to hear all day…plastic toys hitting and bouncing all around the cast iron tub. Keep in mind the fact that this is a 1 bathroom house. So anytime we need to use the bathroom, we have to wait while she gathers up her work materials to take with her. You better not wait until you really have to go in this house.
Taylor takes her “work” very seriously.
It wouldn’t be a good post, if I didn’t end it with a smiling Taylor picture.
Taylor last summer. A time out chair big enough for her *laughs*
Since Taylor’s sister got married and had to move, we’ve been without respite care. It’s hard to find someone you trust completely to keep your child overnight.
Luckily, we were able to find those people. One of the nurses at the infusion center Taylor has been going to since 2007 offered to do it. She loves Taylor & Taylor loves her. She thought it would be good for her kids to be exposed to someone like Taylor.
So, for the past several months, Taylor has been stuck at home day in and day out. Since we run a 9 to 5 business from our home, it’s hard for me to get out and do things with her. So she has been bored and boy can you tell.
She would just meander through the house with her bucket of tub toys…trying to decide if she wanted to go throw them over the shower curtain and into the tub ( a favorite loud past time) or take her mp3 player out and lay on the swing. Another loud past time if you have ever heard Taylor sing. Think 100 cats being run over by a car simultaneously.
She would also make 500 trips to the bathroom every night to make sure nothing fun was going on in the evening without her. Anyway, last week, all the respite paperwork was done and the family came to pick Taylor up for 3days/2 nights. I wanted to run around the house yelling “free at last, free at last, thank God Almighty, I’m free at last!!!!” (Didn’t…but wanted to. Taylor probably would have done that if she could talk)
Apparently she had a blast. She attached herself to their 10 year old daughter Ally, who enjoyed the attention and gave one of their dogs more love than it probably ever wanted. She came back a whole new girl. She walked in the door, had a snack, then took a 3 hour nap. Got up to eat dinner and then went back to bed until 10am the next morning.
She has been happy and good every day since then. No getting up a thousand times a night either. That little break from home did that child wonders. People should never underestimate the awesomeness of respite…for both the parents & the child.
So, this is the “infamous” foot that started us down the road to diagnosing the CML. We’ve been through 16 days of IV antibiotics, bone scans, ultrasounds, dozens of x-rays, & several different doctor specialties telling us they didn’t know what it was.
Everyone agreed that this had nothing to do with the CML. So we were just treating her pain when she had some. This morning, she woke up in a lot of pain. I tried the Ibuprofen first…nothing. I called the doctor and then gave her stronger pain meds and she became more comfortable but everyone felt she needed to be seen.
However, Taylor’s doctor isn’t in on Fridays. Also the only appointment they had was with the NP. Now I love this office. All the nurses love Taylor so I know they have her best interest at heart. The nurse on the phone said, “Dawn, I don’t want to offend you, but it really wouldn’t be fair to have the NP see Taylor because she is just too complex and she’ll scare the crap out of the NP”.
Okay, I’m so not offended by that. I totally get it and I just had to laugh. To me, that sentence was funny. Of course, that could just be twisted sense of humor.
So off we go to the Urgent Care because they know Taylor just as well. (I used to have this secret fear of being labeled a drug-seeker because we ended up in the Urgent Care so much.) The doctor actually laughed at me when I told him that.
Anyway…I’ll stop rambling. I’ve written all of that to just say this. Her last x-ray in May showed no bone abnormality. Today the doctor said that the leukemia can weaken bone so he wanted an x-ray. Lo and behold, she has a slight hairline fracture of the ankle.
Seriously? The treatment is an ankle splint that she does not want to leave on. We don’t want to put her in a cast because then she would lose her sacred bath time. That girl loves her baths.
I’m not upset right now but I’m sure at some point it’s going to hit me and I’m going to be upset that she has to deal with all of this. I will end this entry with a happy Taylor picture.
Taylor at her sister’s house (before she moved). She is singing this song from Barney.
Taylor is 22 years old today! It’s hard to believe that there was a time when we were told she would never see toddlerhood let alone her twenties. Of course, she is a 22 year old “toddler” so I guess it all evens out. *laughs*
I see each birthday now as a gift. I feel so blessed to see her smiling face each & every morning. Well, the mornings when she decides to stay up until 3am while making 5,000 trips to the bathroom are ones when I’d prefer to see that smile a little later than 7am.
So, what do you get a girl who has everything she wants? You give her the things she considers to be the best stuff on the planet.
1 car magazine – $6.00
1 caffeine free diet coke – $1.69
2 packages of Gummi Worms – $3.00
3 Mylar Spongebob balloons – $10.00
1 huge grin & a drool enhanced hug & kiss =
PRICELESS!!!
Here are some pictures of Taylor from her sister’s wedding in May. She had a blast. Please excuse any pictures of me. My face looks funny because I was constantly trying not to cry…both from happiness & sadness.
Happiness that my family was gaining an awesome son-in-law. Sadness because I knew he was being stationed way back in Georgia, at Fort Stewart. I miss them a great deal. No one to call me Nana in person anymore.
Getting ready to walk down the aisle. Taylor held her flower up to her forehead. (I have no idea why though I wish she could have told me the reason. *laughs*)
She’s getting her “groove thang” on with her sister.
Trying to steal her sister’s new husband. Taylor started trying to steal boyfriends the moment her sisters started dating. She’s evil that way.
Hope you enjoyed the pictures. There is nothing like looking at Taylor’s smile to brighten my day. I hope she does the same for everyone else.
First, I want to thank everyone for all their kind words and support. They meant the world to me. I don’t know why I seem so averse to updating this blog. I need to get back to regular blogging.
Yes, things have been busy but I need to make the time…at least for my emotional health.
Taylor is doing very well. She has some issues, but then she’s always had at least one issue all the time, so it’s nothing big. She is still her smiley, happy self.
Since her sister got married and moved back to GA…see, it has been awhile. I’ll have to post pictures. Taylor & I walked her down the aisle. She married a wonderful Army MP when he came back from Korea in May. They had 21 days here before they had to pack up and move to Ft. Stewart, GA. He’s scheduled to deploy to Afghanistan this coming January.
I promise I’ll go back to writing regularly. If not, Jaime can bug me. *laughs* I will leave you with a video of our 4th of July light show. Yes, The Bossman loves his lights. Wait until you see video of this coming Christmas. Visit our Vimeo site if you want to see the rest of the songs.
I’ve finally found the courage to write this entry. I struggled with writing it because I was worried about what some might think & I finally let that go.
I’m confident in the decisions I’ve made & I can’t let what others think scare me.
Taylor was diagnosed with chronic myeloid leukemia. While this type of cancer is more common in older adults, it can happen at any age. The oncologist believes Taylor developed this type because it involves issues with the #9 chromosome and Taylor has Trisomy 9p.
We are not exactly sure what stage Taylor has because we are not going to do a bone marrow biopsy. The reason for not doing one is that we are not going to seek treatment.
I’m sure there will be people shocked by that. I follow the blogs of some DS children being treated for leukemia. However, we don’t feel it’s in Taylor’s best interest to put her through chemotherapy. I’ll admit to being scared when I shared that decision with the oncologist but he was surprisingly understanding & sympathetic. He actually agreed with our decision.
Taylor has many other health problems and we’ve been told that she’s already outlived the expectations of all her doctors. I want whatever time Taylor has left to be happy. All her doctors believe that the side effects from the chemo outweigh the benefits of putting her through the treatments.
Believe me when I say that there was a lot of thought and research that went into the decision that we made. Right now, we are treating any symptoms that might make Taylor uncomfortable and her doctors are on board with that.
I know in my heart that we’ve made the right decision and the best decision for Taylor. Of course there is that part of me that wants to do whatever it takes to keep Taylor here with me. But how selfish would I be to subject Taylor to being sick & unhappy just for my benefit?
I’m sure there will be people that think I’m doing the wrong thing. I would ask those people to keep in mind that they don’t know Taylor’s medical history. They need to understand that the decision we’ve made is made with the love we have for Taylor. I love that girl more than I could ever put into words but I have to do what’s best for her…not what’s best for me.
Right now, we are focused on keeping Taylor happy & comfortable. Taylor is surrounded by the people and things that make her happy & fulfilled. She has her diet coke, car magazines, computer filled with Barney videos, grapes, & her TV . Sounds like the perfect life to me.
Besides…Taylor is stubborn enough to outlive us all despite any diagnosis.
I’ve been gone for quite awhile. Life just got busy. Of course, then unexpected things started to happen.
As you can see from the picture, Taylor’s port is accessed. She just spent 16 days getting daily infusions of IV antibiotics. We just finished Sunday. She was being treated for a staph infection of her foot/leg.
Unfortunately, while we noticed some improvement initially, her foot and leg are now right back to being big & swollen.
Then Taylor’s blood work started coming back abnormal and the “C” word was thrown out. That’s where we are now. Running tests for cancer. Tomorrow morning, we have a bone scan.
Taylor has been very lethargic and clingy lately. She follows me around the house. Normally, she always does her own thing, plays her own way. Now, I have an intense shadow. You can tell she doesn’t feel well, but it’s frustrating that she can’t tell us what exactly she is feeling.
That’s where I’m at right now. Trying to start the thought process of whether we go with chemo/radiation option, if the tests confirm what the doctor suspects, or to not put her through those things.
I’d like to not have to think about any of that. I’d like to be able to wait until we know for sure. But then the doctor reminds me, depending on the results, we may not have a lot of time to make a decision, so I need to start thinking about it now.
How do you make those decisions? Why do you have to make those decisions? At least I can always count on this smiley face to help me make whatever decision needs to be made.
The “Bossman” told me I needed to update this blog…to get my feelings out. As usual, he was right. It is cathartic to put things out there in writing, even if I haven’t quite dealt with all the emotions yet.
**After posting this, I happened to look at the pictures, and she definitely looks unwell. First time I’ve noticed how pale she is right now.**
I haven’t been blogging about Taylor much lately. Part of it is because the business has kept us hopping for the past several months. In this economy, I’m not complaining. It also allowed The Bossman and me to take a much needed 5 day vacation to the Oregon Coast…Seaside to be exact. Just he and I. It was bliss.
The above picture was taken on one of our many drives. I’m already to go back. Taylor actually stayed with her sister so that was great.
Okay, so on to why my title is what it is. Somehow I ended up following and reading a lot of blogs that involved children with Down’s Syndrome. I think it’s because it’s the closet thing I can get to what Taylor has. However, the only thing that really puts her in that group is an extra chromosome. Taylor’s just happens to be #9.
Trisomy 9p is one of the rare chromosome syndromes. So it’s not like I’m going to find a lot of bloggers with a child with the same diagnosis. Then there is Taylor’s age. She’s 21 years old. She wasn’t supposed to live this long and I’m thankful every day that she’s here. Yes were are dealing with new and serious health issues, but I’ve had her for 21 years.
I’ve tried to help out the blogs I follow with things I’ve learned in the long time I’ve been mom to a special needs child. Sometimes I think I come across as a “know-it-all” and I am not.
But I also realize that things change so quickly in the special needs world. What was once standard procedure when Taylor was little is now considered outdated.
Now I’m running into issues that never crossed my mind when Taylor was little. The fact that my being her mother did not automatically let me make her medical and life decisions when she turned 18 was a surprise to me. Spending over $1300 just for a court to say that my profoundly, developmentally disabled child was not capable of caring for herself therefore needed a legal guardian & that I needed to be approved for that role, shocked me.
After 21 years of caring & loving my child, I now needed approval from the state? Yep, you do.
I would give anything if I’d had access to computers & blogs when Taylor was little. But that was in the “old days”. *laughs* Please don’t think I feel sorry for myself or anything. I just needed to get this out. I think it was what was keeping me from blogging regularly and I miss that.
Also, if I follow your blog, please know that I always read them. I may comment very infrequently but when I do, it’s because I feel like I can help or at least add to the dialogue. I want my comments to be more than “oh, that’s a cute pic”.
I think I’m rambling now. That’s what happens when you just start typing and letting all your pent up thoughts just blurt out with typed words.
And just because she’s cute, I’ll leave you with a picture of the reason I do blog…
I just thought I would share with you Taylor’s first love. She’s always had a deep love for animals but most especially dogs.
This picture was taken at her sister’s house and Taylor treats that puppy like a baby. The puppy, Jasper, actually belongs to Brandy’s boyfriend who is stationed in Korea but of course, Brandy is keeping it for him.
However, I don’t think he’ll have a puppy when he gets home in May. Jasper thinks he belongs to Taylor. Jasper’s tail wags 5000 mph when he see Taylor.
I truly believe that 99.9% percent of dogs sense something about special needs kids. I’ve seen Taylor be able to pet and love on dogs that wouldn’t let another soul touch them.
There are some things health wise that are going on with TayTay, but I honestly just needed to write a “feel good” post today.
Nothing is more heart-warming than this picture of Taylor & Jasper. You can just see the love in both of their eyes.
Happiness is a girl & a puppy! *smiles*
I could say that I haven’t written since November because life has been super busy and that wouldn’t be a lie. However, if I want to be perfectly honest, I haven’t written because when it comes to Taylor, I just haven’t a lot of good news.
Christmas was hectic because we decided to do this to our house this year. It was great fun and next year will be even bigger. Business has been non-stop since August which is the reason we could afford to decorate our house that way.
Taylor had to have another VNS surgery a couple of weeks ago. At her pre-op appointment, we found out that Taylor only had 1 working vocal chord. Okay, since we could still hear her sweet voice, it was okay. The surgeon was worried because of the 2 incisions she had to have, 1 was in her neck and they had to thread new wires in-between her jugular vein and her carotid artery. Apparently very tricky stuff that required 2 surgeons.
Taylor seemed to come through the surgery better then they thought. We had planned to spend the night, but they let her come home. However, her voice is gone. What you get when she talks is a hoarse whisper. No more cute Taylor voice. Her surgeon seems very concerned.
It’s not like Taylor actually talked “real” words but she had a voice. Now she doesn’t. I kept trying to tell myself it’s okay because she came through the surgery when they were scared she wouldn’t. But I think I’m in denial.
I don’t want to only hear this hoarse whisper from now on. I want her voice back. We asked if her voice would get better, but it seems the odds are not in our favor. Furthermore, there could be a breathing issue down the road.
I would probably still not have written here tonight but The Bossman told me I needed to and as usual, he was right. I can’t keep my head in the sand forever. I need to just let it go and move on. At least, right now, she’s home and happy. That is what’s important…right?
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