I bet the title got your attention didn't it. To some people it's a bad word...just as bad as a four letter word. Not to be mentioned in their presence in any way shape or form. To the people on the other side of the fence it is a funny word. Said in jest because "I didn't mean it THAT way".
How do you mean it? When you say the dreaded "R" word? Do you mean that someone is beautiful, smart, amazing? No. You are saying it because you think something or someone is stupid, "slow", or...Heaven forbid...a mentally retarded individual. (Society at large now uses the term cognitively delayed). There is no "nice" way of saying the "R" word. It's rude, offensive and shows a lack of respect for people who are a part of this world. Who live this life every single day. I am not trying to be the word police. You are more than welcome to use the word and hurt people's feelings. Go for it. But why use it when there are so many other words that you can use? So many other adjectives to clearly state what you REALLY are trying to say.
I am no saint and I've never claimed to be. I was so completely self absorbed before I had Violet. I never took in to consideration how my words could possibly hurt another individual. I used terms back then that honestly make me sick to my stomach to even think about now. You know I even have cards addressed to me as "window licker". I swear the word retarded, tard or retard probably left my lips 20 times a day. I guess I just never stopped to think about what I was actually saying. Ignorance is bliss right? Wrong.
I look back now ashamed of the person I was... But proud of the person my daughter has helped me become. Since the day I found out that Violet has Down syndrome, August 18, 2010, I have not used the word in any form. It makes my skin crawl to hear it come from people's mouths the same way I used to use it. I WISH someone had told me it was hateful. I WISH someone had told me I was being disrespectful. I WISH I had known how bad I may have hurt people's feelings. I WISH I could personally apologize to each and every person that was offended by my hateful language. Because now, I know. I know how much it hurts. I've been the mom crying on the next aisle in the grocery store because people are making fun of those with intellectual disabilities. I have had my daughter called a retard. I have had people whisper and stare at her, laugh and call names. And it hurts. It hurts down to your bones. And unless you have ever been in that situation, you can't even begin to understand HOW bad it truly does hurt.
So, if you have been educated about the word, why continue to use it? If the word means nothing to you, it's "just a word" why use it? The word evidently means so much to an entire community of people. Of families, of children. To us, the word is acid on our skin. Out of respect for people that just want to live their lives in peace, dont use it. Find a different adjective.
I'm not saying that people that use the word are evil or bad people. Just misinformed or maybe they were like me...they just never stopped to really think of how it would hurt people.
Here is a link to one of my favorite articles. I hope you will read it and take something from it. The new "R" word needs to be Respect.
Guess who has !FIFTY TWO! yes you saw that number correctly... FIFTY TWO walkers!!! Last year I think we had nine if you include me and my husband! I am so excited and want to thank each and every one of you for sharing the link, donating and registering to walk. So many people have stepped up to show their support for Violet and I am honored to have you all in my life.
You still have until 4:30 this evening to donate and have it go toward our team totals. We were holding steady at second place but are now in third. But hopefully we can at least stay in the top three for Violet's first official Buddy Walk!
Time is flying! It seems like we were just coming home from the hospital. NICU nurses on speed dial and the list of every Dr under the sun wrote on every piece of paper we could find. Has it really been four and a half months already? Our little girl is growing up so fast and developing such an adorable personality. She loves to play bashful. She dips her chin to the side where it touches her shoulder and gives the most adorable grin ever....boy her daddy is in for trouble!
She has been reaching a lot of milestones lately. She is so close to rolling over but she still hasn't figured out how to move her leg and arm out of the way. I think she will get it in the next couple of months. She started reaching out for items the other day. She actually came to mid line to reach for a leg warmer I was holding up. I give her another couple of weeks and she will be flexing her fingers to grasp the item.
She is such a smart little cookie...which gets her in to trouble :) She has figured out that if she grabs her g tube cord with her toes she can bring her legs up so that she can reach the cord. She then yanks and pulls on it like she's trying to get a push mower started lol. I swear she's going to rip that thing out one day.
She is holding her head up all the time now and doing great! I'm working on her trunk muscles now so she will eventually sit up. We do our physical therapy several times every day and it's amazing the difference you can see from day to day. Last week she actually put pressure on her legs for the first time.
And here is the BIG one....she SUCKED a bottle!!!!!!!!!!!!!!! Yep, you read that correctly! She sucked around 1 ounce out of the bottle and swallowed around half of that if not a little more. I am SUCH a proud mommy :) She has done it once since then and she just amazes me. I started adding thick-it to her bottles to help her swallow and it seems to be helping a lot.
So here comes the medical part of the update...I'll just go over each item in a different section...
Cataracts: At our last appointment he didn't say anything about them so I am guessing they have stayed the same...no larger, no smaller. They are not interfering with her vision so it really isn't a big deal.
Nystagmus (A rapid, involuntary, oscillatory motion of the eyeball.) : Its about the same still. It gets much worse right before a seizure so I have learned to look for it to prepare for a bad night.
Full brain and partial seizures: Still not better. She has a lot of issues at night. We can go a week with little activity at night then all of a sudden we get three days of constant nightly activity. It's exhausting but at least she is calmed a bit if I hold her all night. Luckily the worst nights have happened during the weekend so I can hold her the entire night and then as soon as the hubby wakes up I can go catch some sleep and we trade off.
Her neurologist has since upped one of her night time doses of anti seizure medicine and it seems to help a little. We have a follow up appointment here in the next week or two and they will probably up her medicine yet again. We are in the process of waiting for an MRI through the local children's hospital. She has to be put under for it and it evidently takes forever to get an appointment. They said we could be waiting around 10 months.
Oral aversion: completely gone! It's actually been gone for a few months now. She's teething like crazy so she will stick anything she can get her hands on in to her mouth to chew on. Bless her heart. She's been teething since around 4.5 months old and not a single tooth has come through or even looks like it is going to come through. I'm about to call her Cardiologist up in Birmingham to see if it is ok for us to use the teething tablets with her.
Taking a bottle: as you read before....she is slowly getting there. She has taken a bottle twice and sucked one ounce of the bottle each time and drank about half of the ounce. We are SOOO very proud of her!
Her heart: After having been back in the hospital and getting the heart cath it seems the pressures in the different chambers of her heart are fine. We are still having to keep a very close eye on it though because she still has a 3mm residual hole, an lv to ra shunt and a coarc of the aorta.
Liver: we have to get more blood work next week to check her liver enzymes to compare them to the blood levels last month to make sure they are not rising.
GI surgery: We will be setting up V's first appointment to get her Mic-key changed. This will be the first scheduled change because all of the other ones were only changed because the balloon popped inside of her. Boy am I glad those days seem to be behind us! I still don't think I will be changing her button at home. I would prefer to bring her in and let the Dr do it for the simple reason that I have had to watch her suffer so much and have to be the bad guy holding her down during stoma dilation, mic-key changes, seizures, countless blood draws etc. I refuse to be the bad guy anymore. The Dr will just have to do it. For most it is not that painful for the mic-key change but for Violet it is excruciating even with Morphine.
Gastrointestinal issues: They are thinking she might have reflux now but aren't sure. We are trying her out on reflux meds just to see and if it doesn't help within a month we will be doing a scope to look for other possibilities like with her liver. She's been grunting and groaning all day long and will start screaming out of no where. She is acting exactly like she did when she had the protein intolerance until we switched her to Elecare formula. They said if it turns out to not be GI related it could in fact be neurological related....it's just yet another thing we will have to wait and see about.
physical: She is lifting her head like a pro, lifting herself slightly while at an incline, rolling halfway and discovered her feet a few weeks back.
Even on her worst days she is a joy to be around. Sure I get tired and cranky like any other new mom does. But hey, that's what a good hubby is for. I look forward to the weekends because I get to catch up on sleep! Oh glorious glorious weekends!
This will be Violet's "first" Buddy Walk unless you count when she was in mommy's tummy :) I can't wait to see all of our friends and family out there showing their support! We did really great last year but I'm hoping to double our total this year. High hopes huh? I think we can do it though!
There are big ideas for the Down syndrome society and I can't wait to see these ideas actually come to life! Every donation counts, even if it is just $1.00 you will be helping to pave the road that Violet will one day walk down. The funds stay in our local community to help educate the community and assist individuals with Down syndrome.
The date is October 15th and I can't think of a better way to spend a Saturday morning than making a difference in the lives of so many individuals. Just click the link above to register as a walker (only walkers will receive a tshirt) or you can make a donation if you will not be able to attend.
Where do I even begin! Violet has been home for around 2 1/2 months now and we have had our ups and downs but life is good....so very good! Every morning I get the honor of waking up to a baby that smiles and coos and shows the utmost love in her eyes. I am blessed!
I guess everyone thinks our lives are completely different than a typical family and I guess in some ways we are very different...but there are so very many ways we are just like everyone else. Let me walk you through our day.
We wake up each and every morning at the latest 6:45. Violet finds this amusing because mommy is NOT a morning person and she completely is. I am woke to the sound of chit chatting from her crib. She has a party every morning with her big stuffed zebra, her monkey, her rabbit blanket and her Dumbo. I pick her up and she gives me the biggest gummy smile you can imagine. She does her "lovey eyes" as I call them. When she grins so big she can't keep her eyes all the way open. Ah it just melts my heart! Her laugh is absolutely infectious! The sweetest melody my ears have ever heard!
We have some loving time in the rocking chair after I change her diaper. Just cuddles while mommy tries to wake up. Then it's time to draw up her meds. In the morning she has her trileptal, lasix, zantac and tummy drops. Boy her having a gtube is a blessing sometimes! I dont have to fight with her to take her meds, just open the port on her gtube and push the syringe of medicine in and BAM, I'm done!
After meds it's time to make some formula up to replenish her feeding bag for her gtube. I make 4 hours worth at a time during the day and the pump delivers it to her at 38 mls an hour. The pump comes with a back pack that you can put the feeding bag and pump in to so you can move around the house and where ever else you need to go. So I pack up the back pack because we are constantly moving around the house. We come in to the living room to watch some Signing Times, Dumbo or Strawberry Shortcake while mommy gets things situated for the day.
The Lasix has already started kicking in at this point so there are a few teetee diapers to change. We play with her paci and work on her sucking skills. Every other diaper change we work on neck strengthening exercises where she is laying flat and I hold her around her arm area and pull her to a sitting position. This makes her use the muscles in her neck to lift her head and just with a week of doing this she has made a HUGE improvement.
At this point she's getting a bit tired and it's nap time. One of my favorite times in the day. I don't put her in a crib, in her bouncer or anywhere other than my arms. I love this time. Just me and Violet rocking in the nursery with a Celtic cd playing in the background. Ahhhh, so this is what complete and utter happiness is!
After nap time we usually hit the road to do some shopping or visit friends and family...it's a hard life but someone has to do it :) She's a star wherever she goes. Whether it's the Drs office or Wal Mart we can't go anywhere without people stopping us to ohh and ahh over her. She is such a little Diva! (but mommy loves every minute of it)
Car rides are her favorite! She usually falls asleep before we are out of the neighborhood. We go do our grocery shopping, appointments and visiting and then head home for the day. We change the feeding bag every night and give the night time round of meds which is trileptal, phenobarbital, zantac and tummy drops.
then it's time for the rocking chair. Within minutes she is sound asleep. Usually with her face nuzzled up in to your neck and her hand resting against your cheek. The glow of the nightlight as the only source of light and the wonderful sounds of Enya playing on the radio. During that time I reflect on my life. Yes, we have a lot of hard times, but it just makes those good times that much more special.
My daughter is perfect. Every single extra copy of the 21st chromosome is perfect. She is my heart and the reason I wake up every morning and I could not even begin to imagine my life with out her. No this isn't the life I pictured for myself when I was growing up...then again that "other" life had me married to Brad Pitt and I was a super model....guess we can't have it all LOL.
So welcome to my life, we are more alike than different! As one of my other friends says...it's a perfectly imperfect life!
On February 28th I had to put my trust in a man I had only met once the day before. I had to trust him with the life of my daughter. He would be stopping her heart and I had to trust him to get it to beat again.
I held on to my daughter and tried to memorize every curve of her face, her smell, the way her skin felt under my hands...every single detail of my little angel. Because even though I should have been thinking positive thoughts, I was in a very dark place. A place no mother should ever have to be. A place of despair and broken hearts. Every outcome I thought of all ended with God taking my baby girl away from me. I was petrified. People were in and out of the room speaking to me but I had no clue who they were or what they were saying. I was busy praying like I have never prayed before. Praying with the desperation that only another mother in this situation can even begin to understand. They put Violet in an isolette and we made the long walk over to the surgery area.
Before I really understood what was going on they were wheeling her through the double doors. Tears streamed down my face. I was numb. It was a silent cry because I just didn't have the energy to do anything more. After the double doors shut I glanced in the other direction. My dad had walked away and now I saw why...he was crying. My dad who NEVER cries was in tears watching his daughter have to say goodbye to her daughter. This was now the second time I had to say goodbye to her not knowing if I would get her back.
We waited, waited...and waited some more. We were updated when they started surgery and the blood transfusion. The next update was the hardest one, she was on bypass, they had stopped her heart. Now I prayed that they would be able to start it back with no problems and bring my baby back to me. She was so young, only 5 weeks old and not the weight they wanted her to be for the surgery. The waiting was agony.
We heard our names announced over the intercom letting us know we had a message at the desk. I jumped up from my chair and took off. They told us she was off of bypass! Oh thank you God! We would be able to talk to the surgeon in around an hour.
After a while they led us in to a room and the surgeon came in. He explained the entire procedure and all of the holes he fixed and said her VSD was the largest he had ever worked on. Scott and I went in first to see Violet. I knew what to expect because my friends had sent me pictures and videos of their children after open heart surgery. I was glad I prepared myself in advance. She was swollen, tubes and wires were everywhere. A wall of beeping machines surrounded her. It was so intimidating.
The worst part was now over. The surgery was complete and she had been brought back to us. We knew we had a long journey ahead of us but at least one of the scariest parts of the journey was over.
Two days later she had to have emergency surgery to insert a tube in to the area around her right lung because of severe fluid build up. Her lung was in a collapsed state and could not expand so she wasn't able to breathe properly.
Wow, two surgeries in less than a week. She was transferred back to the RNICU at UAB for the rest of her recovery. Each day there was a huge difference. She was so much more alert, her breathing was in a normal range, her heart rate was better and there wasn't anymore heart rate drops. She was going to make it.
Here are a few pictures from her birth, before surgery and now after surgery. She's come a long way!
(2 pictures above) were take right after birth.
(above) around 2 weeks before surgery.
(above two pictures) taken in the days following open heart surgery)
(above) these are all pictures of her now. She's alert and just a bundle of joy. She's my little heart warrior :D