Tag Archives: hope

A Felix Update

As of this month, September, we FINALLY have all our services on track for Felix back here in Iowa. It feels like it took forever, but we’re finally there!

• He has been evaluated and approved for physical therapy and speech therapy. He started PT this week, twice per week. The therapies will be done in “shifts,” such as a couple months of one, then a couple months of another. So he’s not overwhelmed with everything at once.

• He has an occupational therapy evaluation later this month, for which he will also be approved.

• I have the AEA/Early Access (Area Education Agency) involved, also helping with therapies at home, including feeding therapy, and eventually getting him evaluated and set up with an IEP for school.

• He will be eligible for preschool in February when he turns 3, but Jarrod and I are thinking he will start with the next school year in September 2022 instead. We want to give him more of a chance to gain more skills in his therapies first, since there’s been such a disruption due to our move.

He saw his developmental specialist yesterday, and he got a bunch of referrals for more testing:

• He has a sacral dimple that will be imaged to make sure it’s not affecting the function of his spinal cord.

• He will be getting another eye exam because I’m truly convinced he has issues with distance, still.

• He is going to get a swallow study done because his inability to chew and swallow properly is getting in the way of his ability to properly learn to feed himself.

• And finally, he has an appointment for genetic testing and counseling early next year (long wait on that one, it was scheduled in April).

Also with the appointment yesterday came a new diagnosis: Autism Spectrum Disorder. It was bittersweet for me, because I have suspected this from the moment Felix came home from the hospital at birth. With the diagnosis I felt heard and confirmed. But the flip side of that… all the hope I had that he could grow and develop and come out of his delays has now been crushed. This is a permanent state for Felix. I’m not scared or intimidated by this diagnosis. I just know it’s going to be a lot of work. Then again it already has been. We’ve all adjusted to the therapy and appointment schedule. We already know tests will keep coming until we find answers.

The specialist said ASD is secondary to the real issue, and he believes the genetic testing will hold the real answer. Personally, my only concern in the genetic realm is finding something degenerative. That’s my fear. But I’m hoping for the best, and we will cross whatever bridge is laid in front of us when we get to it.

No matter what, this little boy is a blessing. I couldn’t ask for a better toddler. He’s sweet and cuddly, curious and strong, determined and stubborn. He’s growing and learning on his own time, and that’s perfectly okay. I love him unconditionally.

Rebuilding Wish List

Since it is quite clear that we are not receiving the things that the moving company stole from us (which was EVERYTHING except what we brought in our suitcases and our van), I have started an Amazon wish list to rebuild our home. If anyone feels like helping us out with this, we would be eternally grateful.

To check out our wishlist, click here.

We’re Home!

I never imagined myself living in a mobile home. And I certainly never imagined myself being excited about moving my family into one. However, the mobile home park is one of the places we applied to when our big Iowa house fell through in May. I wasn’t excited by the prospect, but I applied there and a few apartments, since no houses were to be found. As previously mentioned, we moved into an apartment in May after being immediately approved. We moved our few belongings in, and then got our approval for the mobile home. I declined the mobile home at that time because we had just moved into the apartment, but I knew it wasn’t permanent.

While living in the tiny, shitty apartment, Jarrod and I did some serious discussion of future plans. He had been talking about how much he’d love to travel to follow certain bands and musicians, and I had previously (years ago) brought up the idea of tiny living. At that time we wanted a large main house and tiny homes for all the teenagers. But we never went anywhere with the idea. And now that all the teens are going their own ways for the most part, we recognize that we don’t necessarily need a big house, or a lot full of tiny homes. So bringing the wanderlust and tiny living idea together, we looked in RVs and other such ideas. But ultimately we decided to convert a retired school bus into a mobile tiny home.

Then, while visiting someone in their mobile home, I realized how claustrophobic it felt to me. With the long, narrow layout design. At that moment I realized living in a bus would not work for me if I couldn’t feel comfortable in a mobile home. So I decided to make a decision to get myself adjusted. I talked to Jarrod about going back to the mobile home community and accepting the one that was offered to us.

The community manager told me it was no longer available, but that there were other options available. So Jarrod and I went out and toured 3 homes. The first was brand new but very small. The bedrooms were tiny. There was not room for us all. The second was used and smelly, but spacious. She said there would be a lot of work that would go into it before we could move in. The third was brand new AND spacious. But it had pending applications. We knew better than to get our hopes up, but made it very clear that we wanted the third one. It was just a matter of time to see if the other applications were approved, knowing we were already preapproved.

The outside, before it was ready for us.

The next morning I got an email saying we had been approved for home number three! It was everything we wanted. Brand new. Spacious. A beautiful kitchen with an island. And on the edge on the community with lots of greenery in the back. We were thrilled!! We ditched the apartment and moved within just a few days. That’s the only time I’ve felt thankful to not have much – because it didn’t take a lot of effort to move everything.

As of today, July 3rd, we’ve been in our new home for 5 days. It’s comfortable, clean, and OURS. We are renting, but plan to purchase. There’s a purchase program available that we will qualify for after 6 months. We don’t know what it will take to do so, but we’d like to move it to a private property in the future instead of a mobile home community. This will be a long-term home for us.

The kitchen and living room, before and after move-in.

Over the next several years (3-5) we also plan to work on finding, purchasing, and converting a school bus. That way we can have a homebase, and a fully functional home to travel in.

And since I know people want an update on our stuff caught up with the moving company: WE STILL HAVE NOT GOTTEN OUR STUFF BACK. At this point I truly don’t believe we ever will. I continue contacting them and trying to get an answer. They always say they’re working on it. And nothing more. It’s very hard letting go of all the sentimental things we’ve lost. I’m doing my very best to embrace it and see it as a fresh start.

We may have had a very large share of issues this year, but things are finally starting to settle down. With the stability, safety and security of a permanent home, near our loved ones, we can now focus on enjoying life and planning for our future. And to that I say CHEERS! 🥂

My Name Is _____

To my friends and family, and those who know me far and wide: Shauna Mae is no longer who I am.

She was a victim, a failure, an angry and sometimes selfish and insensitive person. The trauma and abuse, grief and depression, sadness and anger inside that person was wrapped up and knitted into the fabric of her very being from childhood into adulthood. Breaking out of the cycle of abuse and self-hatred took a few years. But moving out of Iowa and away from all of the reminders of that life helped to lay that person to rest. I know the name was given by my mother, to honor her mother. And while I respect that naming process, and I don’t want to offend or hurt anyone’s feelings, I cannot be called by that name any longer. To me, that name is the representation of everything I have fought so hard to shed.

I have taken myself on a journey to find a name that suits me. It wasn’t an easy one to come by. I have used online nicknames for many years, but none of them were right. But then, I decided to name myself after what brings me joy. The soft sand and surf between my toes, the bright sunshine on my face, the warm breezes through my hair… What could be better than the best season of the year?

The name I’m choosing for myself: Summer Sky!

To my mom, I mean no disrespect by making this change for myself. I truly hope you can understand, knowing everything I’ve been through and overcome throughout my life. You have been there by my side through all of it, and I have the deepest respect and appreciation for that. I understand what the name means that you gave to me, and she will always be a part of me. I just feel it’s time to move on from her.

All of this being said, I am asking all of my friends and family, acquaintances old and new, to call me by the name Summer from today forward. Thank you for your respect on this matter. And thank you for being a part of my life, my growth, and my future.

Life Is Good

I haven’t had an easy life. Lots of adversity, mostly brought on by my own choices, actions, and energy. I’ve done a lot of quitting things that would have turned out good for me. I’ve been around a lot of negative people. I’ve had a lot of so-called friends that tend to root for negative occurrences in my life, and my depressed reactions. Even when things seemed to be going well for me socially, I ended up with another series of unfortunate events regarding my health. My depression took a turn for the worst, I started lashing out at those I love…. my life, from my perspective, really turned to shit.

Then we moved across the country. I hated it for a while, having brought my negative attitude with me. It wasn’t what I expected, and I wasn’t open to change. I got even more negative. Depressed. Anxious. Angry.

And then I stopped.

I was tired of being angry and frustrated. I started thinking about my kids, and how they see me. And how they deserved better from me. I started thinking about the early days in my marriage, and how in love my husband and I were with each other, and how he now deserved better from me. I started thinking about how happy I was back then, and how well I took care of myself, and how I deserved better from me, too. I started faking happiness. “Fake it ’til you make it.” And it helped.

I’ve gotten involved in a few things, giving me a sense of community, which helped dramatically. I’ve gotten more involved in my home, accepting where we are and finding joy in the little things. Who cares if we aren’t in the perfect house, in the perfect location? We are away from Iowa, like I’ve always wanted. We are in a home that is warm and safe. We have good food in our kitchen, warm clothing in our closets, working utilities and appliances, entertainment for our mandatory time spent at home during the pandemic, and the LOVE of one another. LIFE IS GOOD!

I’ve refocused my energy. I’m not concerning myself with that which is beyond my control. I’m recognizing how blessed I am. I am thankful beyond all words that I get to stay home with Felix and watch him grow and learn. That I am the one who gets to take him to all of his specialist appointments and therapies. That I am the one he knows he can trust to take care of his needs every day, rather than a child care provider. I am thankful that I can create a warm, comfortable home for my husband when he comes home from a hard day of working to support our amazing family. I am thankful for the outstanding man that he is, and how well he provides for us, not only financially, but as a loving father and husband as well. I am thankful that I am able to help Andy learn how to grow into an independent man, helping him navigate the work world and finances. I am thankful that Cory has been able to continue his education online during this pandemic, and not miss out on a year of high school. I am thankful we are only 2 hours from the ocean, 3 hours from mountains, and always in the middle of the woods. I am thankful for, and looking forward to, the variety of opportunities this new part of the country will provide for us all once things open back up and we recover from the illness that has surrounded us for so many months.

LIFE IS GOOD! And I will never take my blessings for granted again.

With all of that being said, this blog is now officially reopened, and I will post an update about once a month. I will share what new things we have been able to discover, what adventures we’ve found, and of course, updates on Felix for our family. 2021 is the start of something great… I just know it!!

Thanks for reading. xoxo