I have struggled writing this post. When I write these I tend to put all of my heart out in text. I don’t seem to be able to keep things out. Putting your heart out with all of its pains and flaws alongside the joys is not a bad thing. It is a scary thing though. Revealing my heart and my life and my family to strangers is odd and terrifying. Knowing that people read these posts and can know such intimate things about me and form opinions based on those tidbits of information has made me nervous. I chose to keep this blog because people encouraged me to share our story. Do I keep it simple or do I really share our story? I choose to share the story.
So River turned 18. It happened. We celebrated!
River’s first day!
On the 9th we had a family dinner just the three of us. I made the meal he requested and we had banana splits that were extravagant and delicious. He got his first gifts from me, a new Halo game and an xbox gold membership to play online. That may not seem like a big deal to some, but it is somewhat of a big deal to us. I am protective and have limited the online interactions my kids have been allowed.There are weirdos on the internet (some even keep blogs). So he was beyond excited. I had reached out to a few friends and garnered him some safe gaming buddies to get him started. So he ate and gamed and was a happy dude.
I had so many emotions leading up to his actual party. I invited quite a few people. Some we have known for many years, some we are just getting to know. There were people who are really important to me that wouldn’t even give us a definitive response on if they would come. Some people completely ignored the invitation. This is really hard to process, how that makes people feel. When people you care for don’t even acknowledge an occasion like this. Kids don’t deserve that. This is the part I have struggled with in writing this out so I won’t go into it any further, but it hurt that this happens.
On the 14th we had a birthday party. I was terrified about this party. Our gatherings in the past have rarely turned out. Usually only my parents take part, but they wouldn’t be with us this time because Pops was in the hospital and Mom was with him. River has never had a birthday party where friends came to celebrate him. 18 years of no friends. I was so scared that he would be disappointed and sad.
Presents are always a bonus
2pm rolls around and it looks like rain is coming so the BBQ on the patio idea quickly became an indoor shindig. Our first guest showed up. One of my oldest friends and her 16 year old son. River and J sit down to some video games while his mom helps me finish getting food ready. Ok, this is a promising start. I am still a bundle of nerves hoping others show up.
3pm and the next car pulls in, a group of my friends who are all adults but they are like family. They come in and chit chat with me after the initial “yay your here” River goes back to games with J.
3:15 and T, a boy from River’s school rides up on his bicycle. (HUGE DEAL to mamma here). A friend from school, River has a friend from school at our house for his birthday. This has never happened before. T joins River and J for some games and River is obviously happy. At this point I am starting to relax and focus on food and such. The fact that there are already people in my house and River is having a party is good enough to call the day a success.
A few minutes later another car pulls in and the D family join us. Their kids are closer to EPh’s age and he jumps on the excited train and scoops in to hang with them. Then comes one of Eph’s friends B from school and his mom and we have a full house. Food is out and people are snacking and chatting, kids are playing games and having a good time. At some point they go out and play basketball for a bit and everything is going really well.
Basketball with friends
I cook up the burgers and hot-dogs and people dig in. Our house is crowded and loud and glorious. I had to step away and cry at one point, I really thought things would go bad. Then the S family shows up and that is four more teenagers and their mom. This is another family we met through school and River really likes them. I believe at this point there was some guitar hero going on upstairs and all of the kids disappeared for a bit. Candles are blown, cake is eaten and I am in awe of what has happened in our home.
that smile says it all
The day is passing and some people are starting to go home. Eph’s buddy B is gonna stay the night so as people head off, I start cleaning up while the three boys are having fun upstairs. River had received some amazing gifts including a Lego set that they are checking out and putting together. Another car pulls up and My friends A and M show up with A’s kids. A’s daughter is the little girl I have mentioned here. She is an intelligent little girl who also lives with autism. River has formed an amazing bond with this little girl that surprises me more every time I see them interact. This little darling had made River some presents herself. Very creative and lovely gifts that River has displayed on his desk and book shelf.
I got to sit for a bit and visit with A and her brother M while the kids played upstairs and about an hour later around 8:00 pm their sister and my other friend showed up with her family. This is Eph’s best friends family and so they all quickly ran upstairs to join the kids and we decided Eph’s buddy would stay the night as well.
My attempt at a Sonic cake
We visited for about 2 more hours and sometime after 10pm they all left and the day ended. The boys and the two boys who were staying the night played games and legos and other boyish fun for a couple more hours before bedtime and all was well in the world.
To most people, I suppose this day won’t seem out of the ordinary for a birthday party. For our family, this has never happened before. Seeing my children laughing and playing with friends is something that we never had before this year. The only other kids that were ever around were my friends kids that we saw on occasion but they had never made friends on their own. It is hard to explain how much it meant to see my son opening presents and eating cake with other people. Our lives have been so isolated. Autism can distance you from the world in ways people don’t understand.
When it came time for me to stop working outside of the home because River could no longer manage school we lost most opportunities to meet people. The heavy schedule of therapies and routines that were necessary to get River through day to day life pulled us out of the small social circle we had. People started to distance themselves. When Eph was born sick, things got even more complicated.
In movies and feel good stories you see familys in crisis and all of their friends rally around and life gets better. In reality when things get hard people disappear. The longer the duration of the difficulties the further people fade away. You have to say “no we can’t make it” or “I’m sorry we can’t have people over today” so often and it gets hard to answer the phone and return calls so it gets to a point that people just stop trying to be in your life or keep you in theirs. It is a sad truth.
I was so engrossed in getting River through everything and getting Ephraim healthy that my whole life was appointments. Doctors and therapists and specialists, hospital stays and surgeries and interventions, these became all we knew. I stopped being Domoni and was just River and Ephraim’s mom. I had no time for anything else. It was worth it though.
River will always have autism, but now he has the tools to help him get through the hard parts. Ephraim is still learning to live with his autism and his health is still a day to day worry but it is better and we have settled into a real life. The boys have this wonderful school and now they have friends. Again I say, it was worth it.
18 and happy!
So it wasn’t a huge extravagant party, and we didn’t get to go to Lego Land (but someday we will), but it was an amazing day. River said it was the best birthday he had ever had and I don’t think I have ever seen him happier. My baby boy has friends who accept him and celebrate him. My family has friends who see how amazing my kids are and give me hope that our lives are only going to get better. We are finally moving out of the autism isolation bubble and back into the real world. It is still a scary transition but we are getting there.
To all of the people who wished River a happy birthday and to those who came and gave him a day he will never forget, thank you. You may never know just how much you have meant to us.
Always Love,
Domi
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