Monday, March 10, 2014

Pretty Good Times

Annalyn recently got a haircut.  She loves it and I think it fits her spunky personality. 
As for Oliver, well, he is enjoying licking the cake batter off his spatula.
Nolan continues to draw and draw and draw.  He is truly gifted in this area.
 
A few weeks ago we were given a huge bag of oranges.  Every day until they were gone which was exactly two days, the boys made fresh squeezed orange juice.
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I posted about Alex the other day.  I realized that when I posted, I had not given enough info about his daily behaviors so it was hard for people to fully understand the huge progress that has been achieved recently.  This was obvious by the barrage of attacks comments.  Oh if you only knew.  But guess what.  You can't fully know him.  You don't live with him.  You don't work with him in school.  You don't see him in church.  You aren't committed to him like we are through the smiles and trials. And until you live it, you have no idea how big a deal his recent success is-- a definite smile!  I so desire to continue to find ways to make my relationships with my children stronger, healthier, and more loving that there is no way anyone can take away this joy.  The people who work with him everyday like his teacher, the office staff, the principal, the school bus driver, and his aide really know Alex. And that's all that matters.
And guess what?  Today was the day of his regimen.  And he was awesome!  And there was zero tension.  And according to him-- zero pain!  For him to be able to maneuver the catheter in such a way as to make it as comfortable for him as possible, is something I nor anyone else could do, and I actually wish I would have listened to the urology nurse who encouraged me to let him do this six  months ago. But better late than never.  I am so happy for my child.  And if it just so happens that part of my happiness stems from not being screamed at, and no longer having a difficult child during this lifelong regimen, that is fine with me! 
 
In case any of you missed my previous post that I temporarily removed, here it is.
 
As for the major breakthrough, it has happened with Alex.  As John and I had couch time this morning, I was telling him once again the constant battle I have with Alex during a particular regimen.   Since it is painful manipulating the tiny stoma in his bellybutton to open up enough to insert a catheter, Alex makes the experience as unpleasant for me as it is for him by screaming in my face as loud as he can.  Since he is worked up already, he continues to be difficult during almost the whole regimen.  I feed off his negativity and he feeds off mine.  Not good.  And then John said something that hit home.  He said he would basically do the same thing if there was a chance it would avoid him any discomfort. 
A light bulb went off for me.  Why not have Alex do it himself?   That was when I decided it was high time that Alex learn to do this part by himself and see that I am not the one giving him pain but rather that the procedure in itself is a bit painful until the catheter is inserted.  He may not be old enough to do 100% of the regimen himself, but he could certainly do the first 10% and then call me to do the rest.  Naturally Alex was not happy when I told him he had to do it himself and he whined quite a bit.  I think he was scared.  Still I thought it was worth him learning to do it by himself so that our relationship would not have this added tension every 48 hours.  As he struggled much in the same way that I do trying to insert the catheter, he realized that even as he tried to be as gentle as he could, there was some discomfort.  After a few minutes though, he got it in.  And he was proud.  I was even more proud of my boy! 
 
As you can imagine, it was an ah-hah moment for both of us. 
 
An answer to prayer, I realized that though he could not do the whole regimen himself, he was able to do this part by himself and then call me in to do the rest.  Since he was very excited at this huge accomplishment, I decided to take it one step further and teach him how to remove the catheter from his bellybutton at the end as to encourage more independence.  Then I left him to do his thing.
 
And you know what, he did it!

This is so huge!  Such progress after all this time.  I don't know why I hadn't thought of this sooner.  I had assumed that since he couldn't do the whole regimen by himself that I should wait to teach him when he was able to learn everything.  How wrong I was.  Just by teaching him the beginning and end has made all the difference.  He didn't get upset and irritable with me except for when he first found out that he would have to do it by himself.  And I didn't get frustrated by his behavior towards me.  And by the time he did it himself, he had long forgotten that he was upset with me.


All this to say, never give up parents!  Never.  Persevere through the hard times. 
Though your parenting challenges might take you very low, eventually your at a place where the only thing you can do is look up.
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Something amazing and wonderful happened this weekend.  I can't wait to share!

11 comments:

  1. I think you're doing awesome. Any time stress and tension is removed it is a blessing. And it can only make the relationship grow stronger! God bless and keep it up!!! Yeah Alex!!!!

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  2. I'm so sorry I didn't comment on the first post! It was a huge praise and celebration! Parenting a blessing from hard places is difficult, wonderful, beautiful, and rough all wrapped into one. Praising God here for the hurdle that has been overcome!!!! Hugs and celebrations sweet bloggy friend!

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  3. So sad that people take the time to judge. You share things that are truly helpful to others. Sounds to me like a win/win for you and Alex!

    Way to go mama!

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  4. Yeah for Alex and Mommy! Praise God for the Wisdom granted. No one has a right to put in their opinion unless they are asked! I didn't see the first post, but I am pretty sure you didn't ask for help, but just wanted to share a victory in your family. If others have parented a child just like Alex, I am sure you would love to share information, struggles, victories, and such to find out what worked and didn't work for them and see what you could apply to Alex's situation. I am so excited to see all of the breakthroughs for all the kids. I know how hard you all are working.
    Blessings,
    Jennifer

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  5. I saw that post and I can't imagine what there was in it that would inspire a mean comment. Maybe being an adoptive parent helps me to understand a little better. I am thrilled for you and for Alex. He's been through so much, and continues to go through so much. Congratulations on this big step forward.

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  6. What! This is so great to read and a clear accomplishment/breakthrough. I'm amazed that anyone would have a negative response! And I'm sure it's a relief to Alex, even if he doesn't know it, to have conquered this stressful thing. Great job, mom!

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  7. So sorry that people feel the need to criticize or leave mean comments. Congrats on the breakthrough... as a parent to a child who can be a tough nut to crack sometimes, I know just how life affirming those ah-hah moments and breakthroughs are! You are a good mama, and Alex is so very fortunate to have you.

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  8. Hi, just to add that I can't imagine what would inspire attacks in your earlier post? I don't get people. It was not only realistic but also very respectful toward your child. I guess there are persons who don't have a clue what is a relationship with children. And I especially liked that you were looking for what's best for your son, and not abusing the power dynamic that is inherent in every parent-child relationship. Cheers!
    Lau

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  9. I am so happy for you and Alex!! Nobody needs the stress you have both gone thru. Congrats! I am new to Smiles and Trials, maybe a year now? I try so hard to go back and read every post and am so disappointed when it tells me this page is no longer available. I knew Alex had some problems and guessed it may be bladder related but still not sure...Whatever it is, I'm thrilled it is getting better.

    Not knowing or being able to find all the old stories is the pits. Reading your blog is like having a great book that never has an ending:) It goes on forever. I must have missed something tho because I notice adorable Nolan has headphones on now? Is this a temp trial or what? I knew from some posts he has hearing and teeth problems but the ears weren't cooperating
    with all the goo. Now it is all better? I can't wait for all your kiddoes to have the majority of medical stuff done with and can continue on having a great life.... Just knowing how much love goes into each new kiddo amazes me. Your whole family is really lucky to have each and every one of you all together working towards the good of each child... I have just never seen anything like it and I love all the stories, good, bad and ugly..They all seem to turn out so well, and you always "tell like it is" That I love!!!
    Peace and Blessings

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  10. I didn't comment on the first post, and I'm honestly shocked that people saw fit to attack you for sharing such a huge triumph in your son's life.

    GO ALEX!!! This internet stranger is proud of you! :)

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  11. I feel bad I did not comment on the original post! I am a pediatric nurse and have worked many years for the Easter Seal Society as a camp nurse. To see "my kids" do the majority of their care while at camp (parents did 100% prior) was priceless when they showed their parents on "pick up" day. Kudos to you! It is tough decisions that sometimes brin the best results!

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I find your comments so inspiring! Thanks for visiting our family blog, and sharing your thoughts.