Tuesday, April 29, 2014

Our Special Needs Journey:Part 14 - Control: Learning to Give it to God

I like to be in control. I must know what comes next and I live by my calendar. I love it. I'd save it from a burning building - yes, my paper calendar is precious to me. It is a great struggle for me that so many things are out of my control at present. Not just the little things but some pretty major things too. I thrive under structure but am living in chaos (although, it's a beautiful mess, my chaos).

At present I don't know where we will live in a few months. In fact, I do not even know WHEN we will move because this is determined by when and IF our short sale is approved, followed by what home is available to rent at that time with a landlord that will accept our madness and chaos and allow us to be tenants.

I cannot control the majority of medical issues my family is facing. Sure, I can take certain steps, like bringing Taylor to the sleep clinic and having an overnight study done. I can follow a routine every night to encourage good sleep hygiene. I can turn off lights and restrict screen usage after dinner. I can buy her medinces and remind her to use her inhaler and nasal spray before bed. I cannot control the outcome and quality of her sleep. (I am trying very very hard, however, to control my response her cranky-pants-sleep-deprived-bad-attitude.)

[BTW, I received the written report regarding her sleep study today. Her sleep apnea does not involve much obstruction of the airway/pauses in breathing. She had 67 minutes of REM sleep total and woke 68 times. So a CPAP machine will not help her in this instance, she is already on meds for restless leg syndrome AND reflux, and is aggressively treating her asthma. With no easy answers this whole thing feels so far out of my control.]

 [Dean and Julia really enjoyed bird watching out her window together! So sweet!]

I am not in control of Julia's health or when she will leave the hospital (unless I chose to take her home before she was properly discharged). [Today we were told at least Friday before they will evaluate again.] I am not in control of what others think of me, if they like me, if I appear "high maintenance" and overbearing. Because advocating for my child is the right thing to do, despite the discomfort it brings me.

The list of things within my control is shrinking these days but my response to each Unknown IS within my control. I don't always have it all together and I'm certainly not Supermom (I took off my cape voluntarily) but I DO have options here. How grateful I am I can leave it all at God's feet!

Because He IS in control! How quickly I forget that He's got me covered. And oh how gracious of Him to meet me right where I am at (which has not been a great place lately - just ask my poor hubby) and remind me of His authority over all. God knows the outcome and He's on my side. I am broken but it is in that brokenness that His light shines through.

When I am in control I am in danger of self-reliance and pride. Down here, in this low place I am now, I can look up. I can draw near to Him and admit I can do nothing on my own. When I lack control I need God all the more and rely on Him to equip and comfort me. He made me no promise life on earth would be easy and I've certainly received MORE than my "fair share" of blessings!

How quickly I've forgotten that all my children are His creation and a gift He has entrusted me with. After Bentlee died I learned to surrender all the kids to God daily. Somewhere in the past 3 1/2 years I've tried to take back the control of their lives that is rightly His.

So as I am struggling with each day's challenges I pause to surrender. (Dean is currently snuggled up to me on the couch, falling in and out of sleep. He's having bloody liquid stools and screaming about his tummy hurting. Temp of 102.2. Turns out he had yogurt as his school snack. So we finally find he has a dairy intolerance causing all these issues and I flippin forgot to tell his teacher! Ack!) Lord, these are your children - would you heal them and equip me?

As we wrap up the study of Matthew in BSF, and in light of Easter recently, I find myself reflecting on Christ's work on the cross. The humiliation he bore, the discomfort, pain, and extreme exhaustion was all for his children, whom He loves. It was also in obedience to the Father, whom He knew was in control. Now the humiliation, exhaustion, and discomfort I am bearing for my children cannot compare to the cross, but it certainly inspires me.
 [Showing off the giant snowman she made with some of the other girls.]

 [Crazy maze made with her Uncle Matthew when he came to visit on Saturday.]

I have gone waaay outside my comfort zone to advocate for Julia while she in at the hospital (inpatient intensive care at an eating disorder clinic).  Today I wrangled an attempt at more sleep for her - as 6 hours a night is not enough for a 12 year old. They will allow her to go to her room after snack instead of making her to stay in the dayroom for an hour, and will enforce lights out by 10 pm.  I asked that they give her a warning as well as have someone complete her nighttime routine of brush therapy, Thankful, and Prayer. The staff also agreed to not wake her until the very last time possible, 6:45 am, since she needs no "getting ready" time before breakfast.

I spent the night with her last night (also my first night away from Bruce, who's almost 15 months old) and got her to actually brush her teeth and hair. I wish I could be with her every night, but this is not an option. Dan works overnights and the other 3 kids are not allowed to sleepover too. So the best I can do is try to make her feel comfortable and cared for.
[Here's Julia in her room showing off both the new jammas I got her AND my crazy long Target receipt!]

I explained to her treatment team that she's refusing meals because the food contains several of her aversions and major dislikes. Or it's served at the wrong temperature, the food is touching, or the texture is wrong. (For example, today she did not want to eat her awesome Belgian waffle because her first 2 bites involved egg shells. She likes the food AND was hungry but did not want to eat it due to the eggshell - and they refused to replace it.)

Now, it may be that they feel it is important for her to work past these types of food issues, but I have to at least speak up and interject that "everything is NOT fine with Julia." She's miserable and the novelty of new friends (the nurses) and games (in the dayroom) and visitors is wearing off. Without a tangible goal, a concrete release date, and being so out of her element, she is depressed, lonely, bored, anxious, and frustrated.

These are not emotions that she can label and tell you she is feeling. So when I'm told she is "happy go-lucky, always smiling, in a great mood, such a delight" I must explain she's not okay. I'm taking over the meal planning tomorrow and have really been stepping in and speaking up on her behalf. This is not comfortable for me. I am humiliated because I feel like the staff doesn't believe me, doesn't like me, is irritated with me. I CAN face this discomfort for my child!

I did try to arrange for her to eat meals and snacks with some of the other patients, since she is isolated in a room to herself and very lonely (she called it being "put aside.").  Turns out she has needed the meal replacement drink at almost every meal (3 meals, 3 snacks) because she refuses to eat the food. That can be triggering to others because everyone will want the drink and it can be a domino effect that hinders recovery. This makes me sad for the others and discouraged by our lack of progress.

The other part of it is she is too easily distracted while eating - so she can't read or talk to someone.  I'm trying to explain the environment of her home IS distracting and there is no way to change that. I may have given them a glimpse at our family picnic there yesterday! LOL!
 [Her baby brother is missing her something fierce! He spends so much time in her arms, he didn't want to let go once she hugged him.]

 [The boys first played peek-a-boo with the giant easel in the room. Then Bruce pushed it across the entire room himself!]

So sure, she's gained a little over a pound since she arrived a week ago, but that is due in large part to the special replacement drinks and the meds and extremely limited activity. This is not sustainable in our home and not realistic for such an active, fidgety kiddo.

It is in this utter lack of control I realize how grateful I am that God IS in control and has all authority. I do trust He's got a plan. I see now that it is a blessing to learn to relinquish control (and being controlling to others -- I'm pretty bossy) and surrender to God's will.

I'll leave you with these words of comfort from Psalm 112:7 that my Teaching Leader encouraged me with tonight: "They will have no fear of bad news; their hearts are steadfast, trusting in the Lord."