I thought the roller coaster was over?

A phrase frequently used in the NICU was that it was a Roller coaster. Some days were HIGH HIGH and others low low. Some days were just OK and others were fine. You didn't have the drastic changes in emotions all the time. Some days were so "OK" that it was "no big deal." The closer we got to the end of our stay the "no big deal" days were more and more frequent.

Often during the crazy time I really wanted to get off the ride. Like at the amusement park, as you are heading up knowing that the drop is coming, the anticipation is a killer. What are you anticipating? Was it the drop? Was it knowing at some point that there would be a drop? I don't know. I don't know what makes the anxiety flow.

It has been almost 4 years into our journey. ( So crazy to think 4 years) And most days the journey is fine. It is " no big deal." But with all the changes coming up the roller coaster ride has taken a jolting turn. What am I anticipating? What is making me anxious? What if I want off?

Dallas is not working for a company so the safety net of a nice set of insurance benefits is running HIGH on our list of anxiety. Ty HAS to have insurance. A lapse in insurance could great impact us for the rest of our lives. Because of his Cerebral Palsy and hydrocephalus a lapse in Insurance could result in him being considered uninsurable. Those conditions alone make insurance companies run for the hills. But without insurance we would surely drowned in the expense of an unforeseen shunt revision and even the day to day care of a child with Cerebral palsy. His botox, speech, physical therapy and occupational therapy, most of which is out of pocket expenses as seeing insurance companies don't always agree that maintaining a functioning body is applicable to children with CP, are sure to cost way more than anyone is able to make even without working on their own.

The long term care system in Arizona, though very broken, is a FAR better cry than what we are looking at in Utah. Because we do have a job the idea that we DO have some sort of income crosses us out for medicaid. Because of that insurance has to be done privately or through a company that you work for. Again, causing a stressor. What do you do? We are even looking at me going to work for a few companies that I worked for before in order to get insurance benefits for the family. I am happy to do so. I am just overwhelmed with the idea that we will yet again be facing no long term care options. We have had it REALLY good in Arizona. A broken system gave us insurance, Therapy ( of all varieties) and respite providers. While the respite was nice I am fine with taking care of Tyler. It is the other necessities of insurance and therapy that plaque my thoughts.

Though I am sad to be leaving those behind my biggest concern is getting him into some sort of speech therapy. Speech is a HUGE concern for all of us. A lot of insurance companies won't provide services to anyone who is just delayed. There has to be a reason. Like a stroke, or brain injury. So unless someone is nice enough to put his speech delay is from a brain injury then we are just out. We have been pointed to a few free ( ok one) free service but there is a waiting list. This next week we are looking at Shriners and what the school offers.

Though we are leaving behind some of his therapies, we are gaining family. Since Ty doesn't have any siblings and with no plans in the works FOR one then cousins, aunts and grandparents, we hope, are going to help us with some interaction on a pretty regular basis. That he can learn how to model those that are doing the things we want him to be doing.

We are looking at what the deaf and blind school has to offer. Though the actual school is to far away for him to be bused I do feel that they might have some services that will be of benefit.

One of the major stressors that invoked this lovely downer topped with upper was a call from a speech therapist that treats kids with Apraxia. She was given Tyler's information and based on his most recent evaluation and what he is doing right now she was giving us a "guesstimate" of what we have to look forward to! She said that general speaking kids that are not talking by 5 can still talk but generally have unintelligible speech. Meaning no one but their care givers can understand them. Causing "normal" society functioning to not be very... um easy. There are a lot of communicating devices that we can try but given that we are moving the testing for it isn't going to be as available.

While we feel as his parents that he will talk and that getting him to family and friends is the best thing we can offer. If we do that and do what we feel is right for him that he will be blessed.

What is really hard is how much as a parent we desire him to be the best him and someone who is telling us he won't do certain things makes you a the deficit. For example: Dallas and Tyler were swimming in the pool. We are trying to get him to learn new words or sounds. It seems that his mouth tries to form it and nothing come out. Its heart breaking to NEVER hear dad, or I love you. Yet in his own way we KNOW he tells us that he loves us. He signs Dad. He signs and loves both of us so much. It still doesn't make that heartstrings hurt less.

"The best and most beautiful things in the world cannot be seen, nor touched ... but are felt in the heart." Helen Keller. She said it perfect. At this point we want him to be exposed to EVERYTHING. Take it all in. Adapt it to his needs and hope in his sweet, larger than life way he KNOWS we love him.


He KNOWS... He knows he is loved. And he IS loved.

I guess after a down day yesterday and a GREAT day today we won't know know what the future will bring and what services we get BUT we do know that in his Larger than life way we want him to be LOVED and feel loved.

So, for now we are coasting. For now the up and down is gone. We can do it! I will stay on the roller coaster ride.. If only for a while!