I’m sorry I haven’t been keeping up on this! I really have so much to share with you guys. I’ve learned sooooooo much lately in my journey to Discover Down Syndrome.
Every September the Mile High Down Syndrome Association has a fund raising walk. I have never participated in a walk for a cause and I was so excited to be a part of something so big and so special. I have a dear friend named Bev who came for the first time in years to support us and Levi and she said she was blown away by how much it had grown. She was there in the beginning and I think everyday that I hope she knows all the things she suffered through, the rough learning curve she had to survive, have been my lifeline more times than she knows.
I was also able to reconnect with a simply fantastic woman named Robin. Robin, my dear beautiful friend, I could write a whole blog about her and it still wouldn’t capture her and her family’s unending love. Her beautiful daughter, Janet K, passed away this February and there is not a day that goes by without a prayer from my heart for hers. But it was because of her beautiful Janet K that the Down Syndrome-Autism Connection was started years ago and if you know anyone who may be facing a double diagnosis like this, please please please refer them to this group. Janet was an unbelievable blessing to all who knew her and this loss is felt all over the community. This is a really beautiful blog post from someone who was fortunate enough to know Janet. I only met her once at a Halloween Party but she was simply beautiful. I left her funeral knowing that those who were lucky enough to really know Janet K were certainly the most fortunate of us all.
Edit: While I was proof reading this post Robin shared a link with a beautiful picture of her and her Janet K. You can see it here and read her letter. She is committed to continuing her work for the Down Syndrome Autism Connection which is such a testament to the strength and warmth you will receive if you find yourself needing a group like this.
Of all the many, many things I have learned about Down Syndrome these past few months, the best thing I’ve learned is that loving a person with special needs, even though we don’t mean for it to, it puts a little light in us. It’s warmth and glow shimmers across the darkness, shatters the growing hate in this world and it spreads like wildfire to all who get to meet and love our special kids. People with special needs are a gift from God to the world to remind us that true, unconditional and unending love is real. I have already met so many parents who have true love for their children and I’m sure as both of my boys grow, I will meet many growing children who have true love to give too.
At the Step Up for Down Syndrome Walk in September, there is a Resources Tent. There were many things represented there that I’m excited to get Levi involved in as he gets older. But I believe it was here that we met MarkWilliamson (firstname.lastname@example.org). Mark is a financial consultant, (I believe. I’m so out of my league on these sort of things- job titles and such) who specializes in helping families who have children with special needs. I HIGHLY recommend having a free meeting with him! In one meeting alone you will be amazed by all the things you’ll learn!
My favorite thing right now is that he connected us with a lawyer (who’s office is in the cash register building downtown and O. M. G. is it nice) who specializes in disability trusts.
So, when we first started talking “trusts” this is what I knew: A “trust baby” is a spoiled brat who acts like the people on Gossip Girl. Something only for the extremely wealthy. But I wanted to meet with him anyway and hear what he had to say. Mark came with us and together they explained why it’s so important to have a disability trust. There are laws that say if a child has more than… I think $2,500 to his or her name, he can no longer receive government support. So if we set up a regular trust or savings account for Levi and start putting money in it and then say, we die and he gets older and if it became apparent that he might need government support because he cannot work, he could be denied any help. This lawyer specializes in helping us protect our children’s future in as many ways as possible. And the price to do it was shockingly reasonable! I am especially shocked at the price I’m considering as I looked out over a breath taking view of downtown Denver. That being said, Josh and I are having a bit of a (severe) financial crisis and so we haven’t been able to meet the shockingly reasonable price yet, but I’m really looking forward to it. I worried (and still do worry) about how we will fund it, but one step at a time right? Josh met a man at the D.A.D.S. group (Dad’s Appreciating Down Syndrome – Please check out http://twitter.com/milehighdads or call the MHDSA office at (303) 797-1699 if you’d be interested in meeting up with these guys) who has a golf tournament every year with his friends and it’s a fund raiser for his son’s trust. So I’m hoping some time in the future some creative friends may partner up with me and we can start getting something going. But I’m a total NOOB at this sort of thing and extremely nervous so we’ll see. I may just get a night job to fund it instead of asking for help…
There are so many more things to tell you guys but I promise to be more faithful with this space I’ve carved out on my little corner of the internet to show you what I’m learning and the amazing adventure that we are on!
Time for pictures! My favorite part!! I just looked back at the last pics I posted and it has been waaaaaay too long! You won’t believe how much he’s changed!! Once we started him on eating solids (and mixing in Juice Plus) all of his issues disappeared and his weight (and strength) took off!! And of course I’ll include pics of Levi’s older brother Jayden! Levi will be a year old in a month and Jayden will be two and a half so I am hoping to have a huge celebration!!