Wednesday, February 6, 2013

Ramblings from my momma heart...

Today's blog is going to be slightly different than the usual posts about the crazy antics that abound around the Clayton, I have decided to share the more personal ramblings of my heart. Some of you might not want to read further, or only may want to look at pictures of my cutie-patootie and that is fine, but for those of you who do read further, I hope you don't mind me revealing a piece of myself. Far too often it is too easy for me to only share the positive side of our lives, rather than let anyone get a glimpse of the emotional pain or physical exhaustion that also lives within our home from having a medically fragile child. As I have shared earlier, these past two weeks have been an answered prayer to our many questions about Max's medical situation along with just wearing us. Monday night (after being released from the hospital) Max was having one of his normal episodes of screaming bloody murder while sleeping. Since I couldn't find a way to relieve his pain, I ended up just stopping his feed...while he was kicking and screaming, I ended up popping off part of his G-J tube which in turn sent his gastric acid leaking everywhere....which then led Daniel and I to spend 10-12 hours in the ER getting this resolved. We decided to stay one more day because we didn't feel it was safe to drive back so tired, and then we get a call saying the hospital has squeezed us in for a sleep study that our pulmonologist had ordered. Texas Children's has been amazingly accommodating since we live out of town and I figured why not...I'm beyond exhausted anyway, lets just get this over with. When I get Max all set up for the study, I notice the snake of wires beside him and think...oh-yeah for me. Not because I know Max is going to have a heyday going all Houdini on those wires seeing how many tangles he can make...
 yeah...I see that smile buddy! But I'm thinking, great this means yet again another restraint. I have had to lightly restrain my normal, healthy 3 year old so I know what every momma feels like when your kiddo is getting something done they object to...but having to restrain a child like Max is a completely different story. This is something I am faced with on a daily basis and is not fun. We all know and love Mr. Max for the extremely easy going little fella that he is...
but something you may not fully understand is that he has to invite you to touch him. He isn't a normal kid who craves physical touch and fact for over a year of his life, he didn't want anyone touching him at all...including me. He is just now coming around within the last 6 months to where he invites you to touch him, interact with him, hold him. The thing is, he has had so many negative experiences with touch that I don't really blame him for being extra protective of his body. So, when I, on a daily basis have to do something beyond his invitation like taping his cannula or feeding tube, I have to restrain him so he doesn't kick or hit me...all the while he is basically cussing me out in baby language. This is something that I have cried over as a momma because I can't even hold him when it is over and soothe him...instead I just have to leave him alone, speak softly to him, and if he allows pat his back. So last night, it took me restraining him for over an hour to get all the leads connected to his body...
to be honest, I thought I might have left bruises I had to hold him so tight to keep him steady from his body thrashing, kicking, and screaming so the technician could get everything on him. Sadly, this is common anytime I'm in the hospital...just the other day I had to pin down his arms, while a nurse pinned down his legs, so the surgeon could remove his chest tube and place a dressing over it.
 I know sweet Mr. Max looks slightly scary in this picture, but the little guy slept like a rock when the test started which did my heart good to see him resting so peacefully. I don't share this story to scare anyone off...and to be honest I'm not quite sure why I'm sharing my heart with you today, but to say that I hurt often just like you. Being a mom is an incredibly difficult task, but one that I love and cherish with everything inside of me. While I absolutely hate some of the difficult tasks within motherhood like restraining my child, I do it because it is what is best for him. Daniel and I are finding so many answers in how to better care for the mystery of Max and that makes all of this worth it. To get to see our crazy haired man smile for one more day...
 I will do anything, even if it means something that breaks my heart.


  1. You are such a sweet momma bear to those precious kids. Although I can't imagine the struggles you endure, I know that God chose you to care for His precious blessing. Even when it's hard, He is standing there giving you the strength that you need to take just one more step further. Just from reading your blog and meeting you once I have seen how big your heart is and your kids are so amazingly blessed to have your heart there for them each day. Stay strong! God is using you in ways that you can't even imagine yet! :)

  2. You are chosen by God, without a doubt, to be Max's mom. Thank you for sharing your very personal feelings. Your strength awes me; it is obvious that you truly rely on the Lord. Otherwise, you could not get through the day. I said a prayer for Max, you, and your family. God bless you.

  3. What an amazing Mommy you are. Can't even begin to understand what you have been through. It is obvious that God is in control. Will continue to pray for your precious family! I love you.

  4. Natalie... thank you for sharing your feelings. We all know you are quite the super momma.... this just humanizes you... which helps us all moms who go through struggles... we know we're not alone. We appreciate all of the updates on Max and all of his wonderful achievements... but we know the story isn't complete without the other side... the struggles to get to those achievements. God has a purpose for Max... what a precious gift and soul for the kingdom of God! I couldn't imagine not being able to hold my child who is struggling... it does pull at the heart strings. Stay strong... we're praying for your family!

  5. I so appreciate your transparency. You are such an amazing example to me of a constant and loving mother. I don't know how you & Daniel do it, but I know that Kason, Max, and Zoe are so lucky to have you as their Mommy. Still praying for you guys. We love you.