So, the house came through. The place that I thought we weren’t getting is ours. Papers signed and key in hand. We move in this weekend.
The kids are very excited and much will need to be done to be ready. All the chaos brings its own level of stress especially for the little dude, but knowing that this will be over and settled soon makes it easier. We are so thankful to everyone for the prayers and support.
Always Love,
Domoni
So this week has been kind of insane. Almost 3 weeks now since this whole scary mess kicked off. My emotions are finally starting to settle to a manageable level, or at least a level where I can shove them into a box and ignore them to focus on solutions.
The kids though, they are still having a rough time. The little dude most of all. Emotions are high around the house. We are all handling things differently. None of us very well though. Meltdowns abound. The singular joy of a meltdown is something i think every person should witness at some point. Maybe people would stop being so judging of other peoples parenting skills and just see that sometimes life is hard for kids. Maybe if everyone had to go through a meltdown they would just be nicer to others. Meltdowns are fricken hard. Why are we having so many meltdowns? Because we have no solid ground to stand on. No structure, routine or stability.
Autism and routine are best friends. There are more meanings to the word routine than how you plan out your workday. The kids need to know what to expect. I can plan out our days and even in summer when no day is really the same, I can plan them. I can warn the kids when things will change. And when things are rough and unexpected, they could always fall back on knowing that no matter what happened they could go home, to their room. They could go home and everything would be as it was. Now they don’t have that. I have to start thinking of packing. I have to start preparing things. The problem is, we still don’t have any place to go and they know that.
River is having a rough time. His way of expressing that is picking on his brother more. He has a lot more attitude and is more withdrawn. He is also getting more emotional. Things are upsetting him easier. I am trying to keep things as calm and normal at home as I can but they still feel it.
Eph being goofy with the dinobot cutout and apparently Marilyn is being cheeky back there too
Ephraim is just weepy and whiny all the time. He needs constant reassurances. He wants hugs and I love you’s every time he walks into the room. He is more dependent on his lovies and has certain toys he won’t put down. He has a little plastic pokemon that lives in his pocket 24/7 now. He cries at every little upset. It is hard to help him feel better.
You can only offer so much of the promise of structure and routine that they need, when you have no idea what the next week will offer let alone the next month. They both really need that routine and structure.
Mall playgrounds are still fair game in our family.
So we have been keeping ourselves busy.
Wednesday we went to Eugene and spent the day with Ephraim’s father. We had a picnic, fed ducks, played at the playground, walked the mall and went to see The Lego Movie at the budget theater. That was a really good day. We kept very busy. Ephraim loved being able to visit his dad there were lots of smiles and giggles and hugs.
Eph with his dad
Thursday started off rocky. Everyone was tired, which added to the emotions. Especially in Ephraim. He had a rough morning. In the afternoon, we went to a BBQ at a friends. That was fantastic for all of us. I got to talk with other adults and some of the conversations were about what is going on and offers of help, while some of the conversations had nothing to do with what is going on and they helped me feel human for a few moments. The kids both got to hang out with other people and had a great time. After the BBQ the boys went to stay the night at the Grandparents house.
a rousing game of driveway soccer made this little dude happy
Friday, I had to go to the dentist, so the kids were at grandmas most of the day then came home and helped me make dinner and most of the evening was calm but as the evening wore on, the crankiness came out. Little guy actually put himself to bed early because he was tired and upset.
So today started off with a bang. Arguing and crying and questions. River is snapping at Ephraim and Eph is crying because River won’t play with him and the dog wants to eat the kitten and my head is still spinning from yesterdays pain meds and it was just all a jumble of crap that I had to wade through to try and finish writing my term paper for Advanced Anatomy and Physiology.
This was no fun and I thought I was going to lose it. Then, there was a knock on the door. Two packages sitting on the porch, with the kids names on them. Just in time too. The boys got quiet for a second as they tore those boxes open. Ephraim squealed louder then I have heard in a long time, while hopping up and down trying to get his new Stuffed Creeper out of the box. River, in his too cool teenage way, just said woah how cool as he delicately extracted his new dragon from it’s box. Both boys wore smiles as bright as the moon.
It was hard to get him to stop hopping for a picture
We have angels. One of them sent the boys these gifts, just to give them something to smile about. Thanks M! You are amazing and we adore you.
Dragons are the way to this kids heart.
Some of these angels are spending time looking into tenant laws and sending me information or searching for rental houses or asking if they can babysit or offering to pack. And some of them are sharing our story. There are Angels making donations and offering aid in places we never knew. There are Angels we have never met who are sending me words of encouragement.
super happy boy, you can see from the puffiness how many tears he has had today, this guy made it better.
All of you, everywhere, have touched my heart. Right now it is so hard to focus on one thing. I am at a point where I am taking it a day at a time and when the days are too hard we go an hour at a time, But I am not giving up. I don’t know if the fundraiser will continue to get attention or if I will find a suitable rental or if we will be living in the camper for a bit, but I know that people support us and want to help and that is more then I have ever really had before.
My phone was stupid today and his smiles aren’t often caught on camera, but he loves this dragon
So thank you too all of you out there. Thank you for keeping us in your thoughts. Thank you for believing in us and showing us people care. If you want to donate or share our story we would appreciate it. If you just want to send us a pray or happy thought, those are much appreciated too.
Always Love,
Domoni
http://www.gofundme.com/Dreaming-of-home
I don’t even know how to express what I am feeling tonight. When I wrote the blog this morning and decided to go ahead and take the advice to start the gofundme page, I didn’t actually think anything would come of it.
People can surprise you when you need it most. The last 2 weeks have been so confusing and emotional. For me and for the boys. Having people reach out to offer comfort and support is something we never really had much of before. Aside from my mother, our support system has been scattered across the country and I have felt so very alone at times.
My original inspiration. 18 years of showing me how to be a better person.
The last 13 years have been harder then I can explain. Sometimes it seems surreal. Like something a fevered brain would make up, or a lifetime movie to entertain the home bound masses in the heat of the day.
How we went from me and River doing well, I was in college and he seemed like any other little dude, to one day a small pain in my side turns into days in the hospital and now years of progressive problems. Frequent hospital trips and too many doctors, that was not how I planned to spend my life.
Then River suddenly shows me how hard the world is for him and our lives spiral into this tiny little box. Just me and my son, working through our hell together. Then when I start to loose hope we will get out of that box, Ephraim comes along and makes us love him. He gives us more reasons to fight. Watching an infant smile through that much pain changes how you see the world. Seeing my little baby face such a serious surgery that could have had some major complications should not be something that I say this about, but in a way he saved us by being so ill.
I had Ephraim in the middle of River’s worst years. That time was dark and painful in ways most of the people I knew couldn’t understand. And we isolated ourselves, and people let us. I was at a point that I didn’t think I could get through it. Then that baby reminded me that pain doesn’t have to rule you. I started to fight harder. I learned more about my Porphyria and I worked harder with River to get him through his pain. I pushed Doctors to listen to me about what Ephraim needed. I argued with teachers and principals and shrinks about how to bring River back out of the hole. I became my own champion and battled my illness. I became a warrior to save my sons.
If I didn’t have Ephraim, I don’t know if I would have reclaimed that strength.
My mother has stood beside me, even when I didn’t deserve it. I have made bad decisions and fallen on my face so many times. But I know no matter how far I fall she will help me back out.
I have grown. I am not the damaged child I used to be. I can see that when I look at River. When I see who he has become. If I was that broken little girl who was lost in herself, I could have never raised him to be such an amazing young man.
Watching Ephraims face light up and the sound of his innocent laughter is like a beacon when I feel overwhelmed.
My second little fighter. He was born stronger then anyone I know.
I do find myself scared and overwhelmed often, as of late. Before I moved into this home, I didn’t really have friends. I know I do now. I know there are people who love us, who want us to succeed. People who will fight with us.
All of you people out there who are sharing our story, who have donated to help me give my children something I can’t do alone, you are what gives me hope. Some people who have never met us, but can feel our struggle. I have no idea how I am supposed to thank you.
This morning I wrote a post asking the world to help me. I opened my family up to what I feared would be shaming. I feared people would call me unpleasant things. I feared many things. I posted that page with tears streaming down my face and had to walk away from it out of fear of repercussions.
When I came home this evening, People had donated to help us, people had shared our story. Over 350 people have read our that blog post.
When I tucked Ephraim in tonight, he was having a hard time. He got to play at a friends for awhile today and there were more people then he expected. He did amazing, but he had some problems after he came home, over stimulation does that. So he was teary and wanted a cuddle. He asked me if we were going to be able to find a place like this. I told him I didn’t know what we would find. Then I told him that so many people care and want us to find a good home that something good will come through for us.
So thank you. Thank all of you for bringing hope back for me. It makes it easier to comfort my babies when I have so many people comforting me.
Always Love,
Domoni
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
You can learn more about us and what we are doing at https://www.facebook.com/Riosdreams
donations can be made at: http://www.youcaring.com/other/building-blocks-for-birthday-dreams/151773
and purchases can be made at: https://www.etsy.com/shop/RiosBdayDreams
Building Blocks for All Their Dreams 