Being a Trisomy parent is not just a title. It is not something that any of us take lightly. In my opinion it is a responsibility, it is a new way of life, it is a calling, and it is an advocacy. When Danny was diagnosed I was so lost, but thank God we quickly found support in other “Trisomy parents”. When Dr Doom said Danny would never live and encouraged us to do an early induction, i.e. late term abortion, I was devastated. But I started doing what I do best… I started researching and learning all I could. And you know what… I found hope…. And not because I found all these medical journals that said there was hope (because they didn’t)… nope I found my hope because other Trisomy parents have shared their kids and testimonies online for me to find.
Nearly all of the medical books and journals echoed what Dr Doom had said. But here online I was finding all of these beautiful children who were not only alive, but thriving and happy. The medical community said that these kids do not live and if they do they’re a vegetable and a burden on their families… oh and boys… forget it… boys do not survive. Well guess what?!?! I found the story of this amazing little boy named Lane, I believe he was 7 at the time. He is happy and full of life. And he was the first to prove to me that boys do live, he was the first to prove to me that all of those medical references were dead wrong. I went on to find countless more kids with this “fatal abnormality” writing a whole new definition for “compatible with life”. And from that day forward, I decided that I needed to share Danny and his story; however he and God decided to write it. We needed to join in the movement to show that these doctors are wrong! They do not have all the answers… at least not the correct ones. Our goal (Jim and I) was to try to bring hope to other families who have been given this diagnosis. We hoped to help show these families that our kids are alive, thriving, happy, not suffering and so full of life. And perhaps, just perhaps with our story we can bring hope to a family that has been told there is none, and encourage them to fight for their precious gift God has given them. And our kids truly are a gift… just ask anyone who has held one, looked into their eyes, seen them smile, and loved them.
And let me tell you, there is no better feeling than another mother coming to you and telling you that your son gave them hope, that he showed them that this journey can be traveled with joy. That is worth everything to me.
We have been so blessed with Danny and the medical professionals that care for him (thanks greatly to other Trisomy parents who have pointed us in the right direction). We have only encountered a few of the negative idiots. But so many families are not so lucky. Some families literally have to go before ethics boards to beg for them to treat their child, some have to go half way across the country to find a doctor willing to treat their child’s medical needs. This is heart wrenching. Every child deserves a chance in this world. Every child deserves the best possible medical care. How can we claim to be the world’s leader in medical care if we are “choosing” who deserves it and who does not? Some parents have to fight daily to not only get care for their child but have to make sure that the information the doctor is giving them is accurate and not just that doctor’s opinion.
Once you take on this journey, you become emotionally and physically involved. You pray for every new family who is starting their journey, you do everything you can to lead them to the help they will need. From hundreds of miles away you hold your breath waiting to hear updates on how children are doing. When another parent is going through some hard times you want to jump in your car and go be by their side, if only it was possible. When a child is fighting a tough battle you spread the word to all of your friends and family asking for prayers for them and their family. And when God takes an angel home, it is like a kick in the stomach. It doesn’t matter if you’ve never met them, or had the chance to give their mommy a hug. You love each and every one of these kids. Every time an angel passes it slaps you with the reality of how fragile life is, especially for our special ones. If we at all possibly can, we go visit the hospital and whoever is in there, and we have attended funerals for babies gone way too soon.
With all of that being said… here is where I may offend some, and honestly I do not care if I do. When parents find out their child has this diagnosis they generally reach out to those of us who have walked this journey and are still walking it today. Most of these parents are looking for hope, but some are not. Sometimes we get a person who wants to hear that aborting their child is a good thing, that they are doing the right thing. Or someone feels that not giving any medical intervention (including basic oxygen) is the right thing to do. Saying these things to someone who fights daily for their child is like a slap in the face. Nothing boils my blood faster than hearing a person say that “they don’t want the medical life” or they hope their child passes quickly…. Yes a mother actually said that!
I can tell you that you will NEVER hear from me that aborting your precious child is okay, you will NEVER hear me say that starving and dehydrating your baby till it dies is okay. You will NEVER hear me say that allowing your child to suffocate by not giving them oxygen is okay. If these are the routes you chose to take… you should really consider your audience before broadcasting your plans.
I firmly believe in doing what is best for the child… not what you think is best for your lifestyle.
This is not a journey any of us expected or dreamed about, but I wouldn’t trade a single second of it. Our world revolves around Danny, and I wouldn’t want it any other way. I have never talked to a parent who regrets fighting for their kiddo, but I have talked with many who regret not giving them a fighting chance.
I invest so much of my time, energy and emotions into helping these families and children the very best I can. And it is a sad day when I have to block someone in a group because they feel our children are suffering and a waste of effort. If I do not block them, I’m likely to hurt their feelings…..
I am pro-life! If you are not, know that I will never agree with you, I will not condemn you (as it is not my place) but I believe you will have to talk that out with God. Please do not ever try to explain to me how it’s about choice. My choice was to get pregnant, to support my son, to fight for him with all my might and to give him the best possible life. Those are choices that will never lead to regret!
Thank you to everyone who has joined us on this adventure. We love you all and are so thankful that you love our little man. I thank God every day for Danny and for all of you.
Originally written and posted on September 3rd, 2016 on Danny’s FB page;
www.facebook.com/dannysmiraculoustrisomy18adventure/
As always feel free to share us and our little man, we are here to spread awareness and hope.
Miracle Trisomy 18 Mama 