Faith

In the final few weeks of this semester I learned about spinal cord injuries: How they’re treated… The difference  flexion-rotation vs an extension rotation injury...  What autonomic and somatic function is lost after breaks at specific points in the vertebral column…

A break at L-3, one may still have upper leg function but still lose control over leg and foot. A break in the thoracic region you still may have full control of upper body but poor trunk balance.  A break at C-5, you are quadriplegic but still have control over your diaphragm. Injury above C-3 causes respiratory distress leading to arrest and death if you’re not put on a ventilator. Cervical spine injuries are most common among children. (WSU NRSG 2500 Unit 13 powerpoint slide 8 :/ )

This is a picture of Evies second story window. 

I was doing dishes earlier tonight when I realized I had not heard her for a few minutes. Typically, she would be in our room scaling up an IKEA cubby filled with my husbands clothes, hanging on the closet rod waiting for us to come get her (only after she pushes over the floor lamp and throws everything on a chest of drawers off- we've learned to not bother with pictures anymore) but we've removed the knob of the door so you can only open it by replacing the knob back on the... nub? 

I went to her room to find my child halfway out of the window, that window above. A second story window. She had managed to push out just enough screen to put her head and trunk out, dangling down. She wasn't crying, just barely moving. I ran to grab her, yelling at her, "NO! That's not safe!" I pull her out (by this time she's screaming), do my best to pull the screen in and slam the window shut all with a strange mix of that blurb of medical nonsense with Tears In Heaven running through my head. Funny how time seems to stop during an emergency.

My daughter is a now one to one; a "patient" needing constant supervision to protect themselves or others.  Unless I want her to be a zombie in front of the tv she is now to the point where she needs someone constantly watching her. As I sit here writing I'm amazed at how long I've gone without thinking what the future will hold for her. It used to be a constant thought but after I moved into the acceptance stage of having a special needs child, it's just not something you think about or try to dwell on too much.  Having three older siblings, I would hope they would take turns after my husband and I are gone. But how can they? How can anyone? 

I briefly worked at a residential care facility, basically a place that Evie could end up in. There were about 50 residents and five staff, three or four one to ones. How does that work? It doesn't. It was exactly the place I never want my sweet girl to end up. As crazy as it was, I love those guys. Even though I haven't seen them for a couple months and may never see them, I think about them often because they are someones child. They came from families that, for whatever reason, could no longer take care of them or keep them safe.  

I have done full on rescue breathing CPR on my sweet girl three times in her short life and tonight was the scariest thing I've seen because I knew without a doubt in my mind what would have happened had I not checked in on her. Her spine would have broken and my girl who loves to climb and swing would be bound to a chair or even dead. 

It's funny because up to that point in my day, I had begun to really stress over funding for school these upcoming semesters. I have applied to a couple scholarships and still wont know for a while. Almost a year ago, my husband and I felt we should move to provide the best possible opportunity for Evie to learn to be as functional as possible. Even though we were able to pay our own bills, pay off past debts, and were on track to possibly qualifying for a home loan after a year, we both felt strongly we had to move before she started kindergarten that fall. Unlike our move from Washington to Idaho, we had no savings and he didn't have a job. But still, we knew if we had faith things would be taken care of.

To say our situation this past year has been rough is an understatement. My husband was unable to get hired on with the same company which would have been same amount of pay. He was finally hired, however instead of having transfer status, he lost  his seniority and started at new hire pay. I had to take a full time position sacrificing pay for benefits. It was at this time Evie was hospitalized and we acquired more debt in the form of unpaid medical bills thanks to a high deductible. 

Faith is funny thing. At least for me. I remember the days when I first had my faith and I swear every prayer was promptly answered. I remember being an overwhelmed single mom, praying on my knees begging for relief or someone to talk to when the phone rang. I remember unexpected checks in the mail coming from random places; rebate for something I forgot about or accidentally overpaying for something I was sure was correct. I remember knowing, without a doubt, my Father in Heaven was there for me and having the intense, strong trust of believing my life was in His hands and He would take care of me no matter what.

It seems these past few months I've been quick to doubt if maybe He just is, I don't know, too busy. After all, my life isn't so bad. Both cars are working. We're not in the hospital. No one has died. We have a roof over our heads (for now anyway.) I've just had a hard time with not KNOWING without a doubt in my mind things will we okay and I've missed the peace that comes with that knowledge.

But for whatever reason, I stopped washing dishes to check on Evie after only seeing her moments before. I didn't hear a voice tell me. I didn't think I heard her only to turn and see her gone. I just knew to check and as I sat, stroking her little hand while she fell asleep tonight I thought of what could have happened had we ignored the prompting to move here.

She would have been bused across town to go to a typical school to be one of the special ed kids. The school wouldn't have the alarmed doors. The school would undoubtedly not have the low ratios her current school does... and I remembered a room upstairs on the second story. My oldest daughter had accidentally pushed the screen out. Perhaps Evie would have fallen out of there at some point. 

I still don't have a strong conviction things will be taken care of. However, I know without a doubt that my mind that  Father in Heaven is watching over us, especially Evie. 

Colic at 6 years.

That is the best I can describe it. The formidable stage between precious newborn and sweet baby where an otherwise perfect being in all aspects... screams. From my experience, colic wasn't just slight whimpering it was all-out-mandrake-like inconsolable shrieks of which one could not fathom the source of. No matter what you did, whether it be vacuuming or putting the poor thing on a running dryer, the screams came.  "Is there a demon in my baby?" "Damien, is that you?" A colic-y baby is the best way I can describe my child and her screaming only the source is not a newborn diaphragm, lungs, or pharynx...

For the past couple of weeks, perhaps even a month, she has started to scream bloody murder.

She screams when I drop her off at school, screams when we go to church, screams at the store; gone for now is my sweet child that I could formally boast "yeah she doesn't speak but she has no behavior issues whatsoever."

Is it a phase? Is it circumstantial? I think it's a little of both. This morning for instance, she's fine driving to school, whimpers a bit, but the second I pull into her school? Screams. This afternoon, I let her watch one cartoon, I turn it off wail. Not wail, SCREAM! I explain to her "okay you can watch one more while I make dinner then you're all done okay?" She stops crying. I give her a five minute warning, then one minute, then 'click.' Three... two... one... SCREAM!!!

I wanted to turn it back on, I did. I knew if I did she would stop and all would be right but how is that helping her? How is that helping her development to reinforce that 1. If I scream I get what I want? and 2. Well, I can do what I want. So I kept it off.  From 1810 to 1950 she screamed. Red in the face, blotchy crocodile tears. I do have to acknowledge she did give me some respite around 1900 which was kind as someone came by the house but the second they left... SCREAM!!!!!!!  And of course she would do this when its my husbands night rotation at work...

 At the forty minute mark, I attempted to record her screams just because I'm a sharing, caring person. Unfortunately they sounded quite muffled as I was covering the camera with my finger. (I just remembered I have a voice memo app on my phone... duh.)  It was so bad that it honestly sounded as though I was personally muffling her with a pillow-which for the record I would never, ever do. The greatest skill a parent can have is knowing when to walk away and give yourself a break, even if it is just to run out to the farthest corner of your backyard for a moment.

At the start I thought,  "What would I do if she was normal? Would I give in to a nuclear grade tantrum?" Never! Instead I tried to find a happy mental place while figuring this out. I know it's her way to communicate. I knew she wasn't physically hurt, so what to do? With my other kids, I would tell them to go to their room to calm down. I walked her back to my room (she prefers it) and told her you need to calm down it's not your turn. And sat with her she continued to walk out of the room. So I put her back (repeat for 20 minutes). I went to go check on dinner so I left her (with the door ajar so she could open it) and as expected she came out screaming walking up to the TV then something miraculous happened, she stopped!

And what would this super mom do to any other child that calmed down? Give positive reinforcement! I ran over and gave her a hug and said I was so proud she calmed herself down. What did she do? SCREAM!!!!!!!!!

 She eventually calmed herself down and went to bed. In hindsight I should have given in. I was so focused on her and trying to find a way for her to communicate or find some kind of alternate activity I forgot that in less than 48 hours, I have two comprehensive final exams.

That's the thing about autism. There is no happy ending. Autism is a spectrum, a blanket diagnosis for thousands of individuals with varying degrees of abilities and impairments. Unlike other disorders, there is no clear diagnosis or prognosis. What may work for one kid, may just do the opposite in another. And as aware as I know she is of people and things around her, so long as she has no real set way to communicate or express herself, she will always be considered low functioning and that breaks this tough stubborn Dane.

Its times like these I try to focus on how far she's come. She's willing to touch and explore the backyard more... She helps get dressed a bit... She's doing better with feeding herself... She stopped hitting the unsecured flatscreen when she wanted tv because we redirected her... She doesn't bite... She has no feeding issues...She doesn't run off (anymore.) I used to think of the wonderful Carly Fleishmann. A non-verbal autistic child who at the age of eleven began out of the blue use a keyboard to communicate. Now she's written a book, attends college, and last I checked is actively trying to get herself on Oprah.

But then again, she had the benefit of multiple therapists coming to her home in addition to going to a special school. There's no way we can provide that kind of intervention. The best we could do was become more in debt by moving 300 miles so she could be in the safest school possible when she started her kindergarten year, giving what we thought would be the best start instead of staying in a school district with a sub-par special education program.

I wish I had some type of conclusion to this entry, a great paragraph filled with hope and optimism that ties everything together but I don't- and I probably wont for a very long time.