Phase Four–Delayed Intensification. Very Hard.

Never in my life have I been pushed and stretched so far to my physical and emotional limits as a mother and care giver as I have been over the past 5 days.  Lincoln started phase four of his treatment and it has not been pretty.  He wants me by his side holding him and with him 24 hours a day, and that’s basically how it’s been.  It seems wrong to complain about that and of course I want to be there for him and with him, but in reality, moms need breaks and when we don’t get them it is hard.  I’ve been amazed at what I’ve been able to do as a parent over the past 7 months– how much I’m able to go through and sacrifice and how willing I am to do it.  He doesn’t feel well and my heart breaks for him and wishes I could take away his pain.

Medications.  He’s back on steroids which he hasn’t been on since Induction Phase over six months ago.  That along with several other drugs.  The steroids main side effect are increased appetite, mood altering and irritability.  His appetite is through the roof.  The boy at an entire chicken broccoli casserole in 3 days all by himself.  It kind of makes nauseous to think about.  Don’t worry, I feed him almost every bite while holding him on my lap.  He doesn’t want to do anything himself.

Words to describe his behavior throughout much of every day.  I hesitate to write this because he is my sweet boy and these words shouldn’t and don’t describe his true self but I also want and honest account of what we went through to look back on.

demanding, inconsolable, screaming, out of control, needy, irrational,  hysterical.

These may sound like typical 3 year old tantrum words, but the difference is the frequency and duration.  Imagine the worst tantrum your child has thrown and then replay it multiple times a day for sometimes hours each time for days in a row. 

Examples of his lack of rational during his episodes.  He’ll scream and demand that he wants me to dump his milk all over the kitchen floor.  When I finally do he insists that I not clean it up.  He wants no diaper on and for me to throw it out the window.  He wants me to hold him and not hold him at the same time.  He wants to twist his sippy cup lid on the wrong direction so that it will spill all over himself. 

Part of me feels like I should just put him in time out and regardless of the drugs it is not acceptable behavior, but I’m honestly afraid he will hurt himself if we put himself in a room by himself.  He is so uncoordinated, especially when he’s so upset that he has no control of his body and I’m scared he will fall and smack his head on something in his hysteria.  The best thing I’ve found is to sit quietly in the room with him, protecting him from himself, until he eventually decides to calm down and usually ends up in my arms asleep.

Refusal to take his Pills.  When he was on steroids before we were able to hide his pills in mashed potatoes and that worked.  For the first few days it worked this time around too, until he chewed up the potatoes the other day, tasted the gross pill and spit them out.  Since then we’ve offered ice cream, chocolate syrup, peanut butter, nothing works.  We’ve tried begging, threatening, bribing, reverse psychology, nothing works. We’ve tried it in drinks and just giving it to him whole – he fights everything.  Last night was the worst.  For probably three hours we tried to get him to take his pill.  It wasn’t until 9:30 at night, at Target, in the toy isle, holding a new letter toy and then taking it away over and over and pretending to leave the store multiple times did he finally swallow his pill…$22.00 and one junky letter toy later.  This morning it only took about an hour.  We took the toy away and talked about how fun it was and tempted him with it and we were able to get him to take the pill that way.

Tender Mercy – Answers to Prayer  Thursday morning was not going well.  Ryan was at work and Lincoln had been basically hysterical from 6am-10am.  I was exhausted from not sleeping much the night before, overwhelmed and depressed, but mostly I was feeling so bad for Sawyer.  I know it’s weird to call a one year old mature, but so often that’s how I feel about him.  I am constantly neglecting him to help and be with Lincoln and most of the time he’s so good about it.  He self plays.  He is happy.  He is independent.  I love him so much.  Every day when I get Sawyer out of his crib Lincoln screams “No Sawyer!  Put him back in his crib” all through breakfast.  Thus was the case Thursday morning and it was just all too much. 

In a moment of desperation and a feeling of the need to vent I texted my sisters something pretty dramatic along the lines of  “Help, Kill me, This is hell”.  Obviously I don’t really feel that way and I’m pretty sure they knew I was being dramatic, but it had been a miserable morning and it seemed like it would help to tell my sisters. 

A few minutes later Wendy called.  She asked how I was and told me how sorry she was.  Right then someone knocked on my door.  I told her I didn’t want to answer it because I had no make-up on, no bra on, was basically a complete mess.  But Wendy told me to answer it and that she’d just been praying for someone to come help me because she couldn’t.  I went to the door and it was my neighbor who I barely know, but who had watched Sawyer for me the day before while I was at the hospital with Lincoln.  She said she’d been thinking about me and just wanted to come see how I was doing.   She wondered if she could take Sawyer for a ride in the wagon around the neighborhood.  Tears filled my eyes and I was overcome.  I told her I had just been on the phone with my sister who had been praying not five minutes before that an angel would come help me.  Sawyer excitedly climbed into the wagon and went for a ride, and I was able to calm Lincoln down.  Sawyer was able to have some fun and get some attention – the very things I had been feeling so guilty and bad about all morning.

Sometimes the lord answers our prayers over time and sometimes he answers them immediately.  This was an immediate answer to prayer that was so powerful and special to me.   I am so grateful for my sister and her love, concern and prayers for me.  I’m grateful for the kindness and love of my neighbor who I hardly know.  Mostly I am grateful for a Heavenly Father who gives us strength, shows his love and awareness, and answers our prayers even in our darkest hours.