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I hope that my wise, sweet husband and amazing father to Jack is right. Jack was just really tired tonight. In retrospect, I'm pretty sure that he is right.
Jack cried that he wanted to watch more you tube videos but it was bath time and I cajoled him to the bathroom with the offer of a piggy back ride. But we got there and it all fell apart. He wanted to take a bath. He wanted Irish. He did not want to take a bath. He wanted to take a bath. He was all done. He took his socks off but cried about getting out of his shirt. He did not want to use the bathroom. He did not want to put on his PJs. He wanted Mama. He wanted Mama to go away. He wanted to sit on Mama’s lap. He wanted Mama to go away.
My mind whirled. What do I do? He will live if he doesn’t get a bath tonight but wait! If I let him skip this bath will it teach him that he can throw a fit and get out of doing things? Is this a fit? Is something wrong? Is he stressed? What does he want? I wish I could understand everything he says. What does he want? Does it matter what he wants? He needs to get to bed. He’s so upset. How will he get to sleep? Is something bothering him?
I finally got him calmed down and got him into bed. He drifted off to sleep and the evening routine of keeping him breathing while asleep began. Then Dave brought the mail and there’s a letter from the school. It’s time to figure out if he should go to kindergarten next year. It’s time to plan his goals for next year.
Jack’s oxygen levels began to drop. We propped him up on pillows. He coughed and sputtered from the ever present night-time secretions. He tossed and turned and rolled off the pillows.
My mind whirled. Should we give him Afrin? How many days has it been since his last dose? Why is he having such a hard time these past few nights? Should we go ahead and put the Bipap on? Is he recognizing the color black? Should we take a step back from potty training for a bit? Does he need B12 supplementation? Is he stressed out? What was he saying earlier tonight?
And I cried a hard cry like I have not had in quite a while. And I prayed. I prayed and cried. I am overwhelmed and I do not have the answers. I don’t even have all the questions yet. As I cried and prayed sitting there next to Jack’s bed, I remembered what I believe. I don’t have to have the answers and it is not all dependent upon me. God has a plan for Jack that I cannot begin to fathom. I will not always understand God’s plan and it will not always seem fair to me but that does not make the plan any less good.
Jack cried that he wanted to watch more you tube videos but it was bath time and I cajoled him to the bathroom with the offer of a piggy back ride. But we got there and it all fell apart. He wanted to take a bath. He wanted Irish. He did not want to take a bath. He wanted to take a bath. He was all done. He took his socks off but cried about getting out of his shirt. He did not want to use the bathroom. He did not want to put on his PJs. He wanted Mama. He wanted Mama to go away. He wanted to sit on Mama’s lap. He wanted Mama to go away.
My mind whirled. What do I do? He will live if he doesn’t get a bath tonight but wait! If I let him skip this bath will it teach him that he can throw a fit and get out of doing things? Is this a fit? Is something wrong? Is he stressed? What does he want? I wish I could understand everything he says. What does he want? Does it matter what he wants? He needs to get to bed. He’s so upset. How will he get to sleep? Is something bothering him?
I finally got him calmed down and got him into bed. He drifted off to sleep and the evening routine of keeping him breathing while asleep began. Then Dave brought the mail and there’s a letter from the school. It’s time to figure out if he should go to kindergarten next year. It’s time to plan his goals for next year.
Jack’s oxygen levels began to drop. We propped him up on pillows. He coughed and sputtered from the ever present night-time secretions. He tossed and turned and rolled off the pillows.
My mind whirled. Should we give him Afrin? How many days has it been since his last dose? Why is he having such a hard time these past few nights? Should we go ahead and put the Bipap on? Is he recognizing the color black? Should we take a step back from potty training for a bit? Does he need B12 supplementation? Is he stressed out? What was he saying earlier tonight?
And I cried a hard cry like I have not had in quite a while. And I prayed. I prayed and cried. I am overwhelmed and I do not have the answers. I don’t even have all the questions yet. As I cried and prayed sitting there next to Jack’s bed, I remembered what I believe. I don’t have to have the answers and it is not all dependent upon me. God has a plan for Jack that I cannot begin to fathom. I will not always understand God’s plan and it will not always seem fair to me but that does not make the plan any less good.
18 comments:
Oh, Marie! What a tough night! Sometimes it seems like that when it rains, it pours-and floods! The good thing is that God's mercies are new this morning, so hopefully today will be a really great day!
Marie you are the best mom! I want to be just like you when I grow up. Bad nights happen and it takes its tolls on all of us. JUST BREATHE. Everyone has days when they are tired and cranky and don't know what they want. Alicia
Thanks Lianne and is that my sweet niece Alicia? Thank you so much!
Sounds like a typical almost-5-year old to me!
:0)
Wait til he's in his teens. THEN you'll really be shedding tears! :)
You poor thing. You need some pie and a hug!
Duckie, is that an offer? I hear San Antonio is beautiful and your pies look delish!
The second guessing is awful, isn't it? I think every mom goes through it no matter the health issues let alone the special medical needs of Jaok. Strength, peace, and wisdom to you!
That last line is SO powerful-- Wow, that's the ultimate testimony to living a live driven by faith.
~Elizabeth
Confessions From A Working Mom
Sometimes we all just need a good cry. I can only imagine the fear and frustration involved in raising a child, but I know that if you ask, He will provide the answers.
Stopping by from SITS.
Your faith is so very strong, I admire that. My has faltered.
I agree, though you are an amazing mom. Those days are tough I imagine for both you and Jack.
My Joey has many a night like that, and it's not easy.
xo
I know those days of questioning every decision backwards and forwards, under and over. And I don't have nearly the medical concerns to worry over that you do. I'm so sorry! I'll be praying for a worry free and fun weekend!!
Sorry you had such a tough night. I really hope today is better.
Aww Marie when I was reading your post I was thinking I remember those days. Like the others I didn't have the medical concerns but I remember wanting to pull my hair out at times cause I just couldn't soothe her or know what she wanted. I too hope that everything went better today. You are right to get that cry out. You are such a good mother and part of Gods plans for Jack was for YOU to be his mother! Praying friend!
I am so sorry. I can't even imagine how tough it is to bear all that you do.
I'm hoping and praying for a better weekend for you all.
Oh hun!! I imagine that must be so hard. We all cry sometimes. I have cried plenty lately. Day in and day out we parents find ourselves questioning the things we know and the things we feel. It is hard - but with HIS guidance we will do what is best.
I've gotta tell you, as special needs mama too, (I only blog the food allergy stuff and keep the rest offline) the things that are hardest for me to deal with are the most "typical" behaviors. That sounds like a classic meltdown. For both of you, really. Sweetie, you need a nap! A nice long one, with a bag of chocolate to keep you company.
Wow...what an amazing post...I can so feel the rush of so many emotions and thoughts....It's so true...but yet so hard to accept and trust...in gods plan...especially if we don't know what it is....thank you for sharing...and I pray that things will be better!
Happy SITS day!
Wow. I just stopped by from SITS and does this entry ever convey the feelings involved with parenting! It's so hard sometimes!! *hugs*
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