Recently On Twitter I started sharing information about my life with Violet and encouraged my
very few followers to feel free to ask me questions about our life to be able to open discussion to education everyone. One of the questions was.
"@trueBreview How has having a child with down syndrome changed your life? in both good and bad ways? <3"
And this really got me thinking...there are so many ways my life has changed and I listed out a few of the key points on twitter and was like wow, this needs a blog post to even begin to touch on some of the ways my life has changed in the good, the bad and the in between.
Let's start with the good. Because all too often, you hear of the bad. The negative that surrounds having a child with special needs, and yes, there is a lot of horrible things that you go through but there are also so many amazingly wonderful things.
*I think the biggest thing for me was just how much I have grown as a person. That's not me tooting my own horn...ok maybe it is and I haven't grown as much as I thought I have lol. But no, truly, I had to grow a backbone. Before I had my daughter I was a complete and utter push over. Everyone used me as a door mat and I allowed them to walk all over me. I was so intimidated by authority figures. Now, I have absolutely no qualms with going head to head with a team of Drs and surgeons. I will go in to a board meeting with an advocacy group and lay out exactly what I think is wrong and how it needs to be handled. If I don't agree with something, I say it. And it's all because of Violet. She unleashed my inner bi&ch. Excuse the language but it is what it is. The mama bear came out the day she was born and it is a force to be reckoned with. I embraced it and channeled it and use it when it's needed. Because there were many times in our journey where the only thing that got me through the hard times was my anger. Otherwise the tears would have taken over. I don't have time for tears. Anger I can handle. Anger I can channel in to results. I'm always respectful with Drs. Always polite. But it gives me courage to stand up and have a voice. Just because you have an inner bi&ch....doesn't mean you need to be an OUTTER bi&ch. But Violet gave me my voice. And for that I will be eternally grateful to her for. But it's a necessity. Because she cannot speak for herself. If I do not fight for her, no one else will. This is my job. I am her advocate.
*Another great thing that has changed in my life with Violet is the online support system that I gained when I found out I was pregnant and also when I found out she would have Down syndrome. I had joined an online WTE mommy group and then met several parents on Facebook that have children with Down syndrome. These families have been my rock through the years. They are my crown jewels. They are priceless. It's a virtual Encyclopedia of knowledge that I can tap in to at any given moment all over the world any time I have questions or doubts. If I'm going through something with Violet...chances are one of my friends have went through something quite similar. And even if they haven't they will commiserate with me. Because they know and understand how lonely and frustrating it can be when you just need someone to "listen". We are family. We have gone through pregnancies, births, loss of our children, loss of spouses, divorces, adoptions...we've literally been through it all together. And we stand strong together. Violet brought us together. I've met so many of them in real life and many of them have become some of my best friends in the world.
*I've learned to cherish even the tiniest milestone. Something as simple as when Violet took 2 CC of liquid by mouth the first time. Or when she allowed the tip of my pinky to be put on her lips because she had such a horrible oral aversion due to having tubes down her throat from being in the NICU for so long. When she was able to sit up for the first time at well over a year old. When she walked for the first time at over 2 1/2 years old. When she learned to suck from a straw for the first time at 3 1/2 years old. It takes her so much longer to learn to do things and she puts SO much work in to learning to do something so when she DOES finally do something, the victory is that much sweeter. I cry at every single milestone. Huge horrible ugly sobs. And I'm not even embarrassed about it. The pride I feel when she accomplishes something is so overwhelming, you would think she just won a gold medal in the Olympics. I'm on the phone calling all the family, I'm on Facebook blasting it to the world. Because it's HUGE. We spend years working on these tiny little milestones. And she finally reached it. I never expected to get excited over something so simple and so tiny.
*So this is the "in between" I was talking about...I don't know that Violet having Down syndrome is what changed my life for the better. I can't say if I would be this way if she had been a "typical" child or if it's because she has Down syndrome. I tried for 8 years to have a child and I wanted a child more than anything in this world. She would have been loved no matter what. I wasn't supposed to be able to have children. We found out three days before a major surgery to remove tumors on my uterus that I was pregnant. She was a "WOW, you're pregnant" baby. I'm not going to sugar coat our lives. Because our lives are likely different than a lot of lives of other families with kids with Down syndrome. Many children with Ds are born with no medical issues. Many kids with Down syndrome are born with heart issues, have the surgery and have no further heart issues...or medical issues. That is not the case with Violet. So please keep in mind, that Violet, while her case is severe for medical issues, is not the norm for all children with Down syndrome. This is really not Good or Bad...it's just something that needs to be stated before we get in to the less happier sections of life.
*I think that one of the absolute hardest things for me to honestly deal with, is watching the children from our birth club that were all born the same month and year as Violet grow up. They are all the same exact age as her. And I see them running and playing and talking and going through life with such ease....and my heart physically hurts. I can't count how many times I have seen videos on Facebook or read updates from friends and cried in front of my computer. And don't get me wrong, I am so unbelievably happy for each and every single one of my friends and I love them all dearly. But it's hard. It's hard to watch those children move further and further past your own child. Then for those same friends to have more babies....and now their two and three years olds are moving past your 6 year old. It's a constant reminder of the delays that I am still working on with Violet. Things we still haven't achieved. Things we are no where close to achieving. And yes, we will get there in her time. But that doesn't make it any easier.
*As a mother, you want to make things easier for your child. You want to give them the world and every opportunity in it. And then the reality sinks in that it just took you 3.5 years to teach her to suck from a straw and you're so exhausted....you're happy...but man you're tired. You're tired of having to work a thousand times harder on every simple little thing that most parents would never think to even have to teach their child. Things that would normally come natural to children.
*The medical issues that come along with Down syndrome. I was prepared for "Down syndrome"...however I was not prepared for the medical issues that came along with it. As I mentioned before, many kids with Ds are "healthy" other than having Ds...then there are kids like Violet. She is what they call "medically fragile". Months in an out of the hospital, heart caths, open heart surgery, tonsil and adenoid surgery at a very young age because of obstruction, gtube surgery, revision of gtube....now on the list is multiple open heart surgeries one of which we are preparing for. Then there are joint issues that leaves her in a wheelchair for months and us flying across the country trying to find medical care for her. She can't take antibiotics unless we are REALLY worried about something because she risks getting Cdiff which she has had multiple times. She's also highly prone to getting staph/MRSA. All she has to do is look at a hospital and she ends up with staph. So yeah, the medical issues are definitely a downfall of her having Down syndrome.
*Education is another downfall. There is such a lack of funding for the services our children need. Want to fight the school on it? You're going to have to hire a lawyer. Who has the money for that when you're paying out the rear end for medical bills. Oh yeah...the medical bills are also a downfall. It's expensive. It will break your bank account.
With all of this said though, Violet is my everything. She has opened so many people's eyes to what being part of a special needs community is like. We live our life pretty publicly for that reason. We don't sugar coat things for that reason.
I'm not one of those parents that uses catchy phrases like differently abled, more alike than different, human needs instead of special needs. No. My child is different, she's actually very different than most typical kids her age. My child HAS special needs that separates her from typical children's needs. She is disabled. We don't need special "terms" and "phrases" to sugar coat the situation. It is what it is. But we celebrate "different" in our house. We embrace it. Just because you are disabled doesn't mean you are less than. Just because you are different doesn't mean you aren't awesome. Just because you have special needs doesn't mean that you don't deserve to have those needs met with dignity and respect. See...I just went off on a tangent advocating lol. It just bugs me that these days "different" is seen as a bad thing by so many within our own community.
So let's just leave it at this, Violet has enriched many lives going through the good times and educating during the bad times. We are sure to have a lot of ups and downs in our lives but we will get through it together as a family, just as anyone else would.