Battles against terminal illness, anxiety, and life!

Tough Kid

It’s been a week of tough questions from Braden.  He’s certainly kept me on my toes.  We’ve been asked by him in the past why his legs “don’t work right.”  Typically we’ve been able to placate him with a simple, “Everybody’s body works differently.  Mommy needs doctors to make babies.  Nana’s heart doesn’t work quite right, and Papa’s kidneys don’t work properly.”  This time Braden turned his head to the side, raised his eyebrows, huffed, and gave me the look.  He had just fallen minutes prior in the kitchen.  His legs simply quit working and he fell to the floor.  Instead of crying, he let out a howl of  frustration, anger, and annoyance.  Braden demanded more of me than my simple explanation this time.  It hit me hard that he was ready for something more.  I could feel anxiety creep up.  My boy was about to learn something he couldn’t unlearn and my heart broke just a little.

“Braden, you have a condition called A-T.  It’s something you were born with and will always have.  It makes you muscles not work quite right.  You aren’t the only boy or girl with it. There are a bunch of others.  You have even met two of them.  Would you like to see their pictures?” We looked at the beautiful Hardin children and some other adorable kids as well.  This seemed to satisfy his curiosity, but he wasn’t done with me yet.  “Why do I get sick all the time?” he then asked.  I assured him we were working on how to fix that.  We talked about IVIG treatments, but not in those words exactly.  He seemed to be ok with the idea as long as he gets a treat each time.  We will know more next week after seeing his immunologist.  *sigh*  Such huge topics of conversation for such a small boy.  Four years old is far too young to have to decide between injections versus IVs.  Whether this will help Braden specifically will be discussed thoroughly.  I will be sure to let you know.

This morning Braden added additional gray hair to my head by deciding to climb on some bins to get into his dresser.  He was naked from the waist down and getting the only pair of underwear in this house that fit him.  He came tumbling down in a rain of tears.  He wanted to wear his underwear so he can be “like the big kids.”  We have talked in such length about how wearing underwear doesn’t make you big.  Oh how I wish people would stop telling their children they are big simply because they manage to pee on a potty.  We again talked about this situation.  How my heart hopes that Braden will come to accept his incontinence and not let it define him.  We thought we had his fecal incontinence under control, but despite being typically constipated, he lost his control today.  His devastation was so painfully written all over his face.  Thankfully my broken heart was not easily seen on mine.  Braden’s body is a puzzle and a mystery, and as his mother, my job to attempt to explain it to him and help him understand.  Oh how I wish I understood how to do either.

So, tonight we will snuggle down close together and let what matters most be foremost on our minds, our love for each other.  Once he falls asleep, how I hope that my own mind won’t dwell on how tough this week has been on all of us.

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Comments on: "Tough Kid" (5)

  1. Aww….!!!! you are precious people. God Bless you guys. I pray that everything goes well. I Love children so much, and hate all the pain they have to go through. I know your heart breaks….

  2. Becky I’m just so sorry that Braden has to go through this. I’m glad you have this outlet to write about it and I know you have a very strong support system. I cannot begin to imagine what it feels like for Braden or for all of you who love him. I’ve never met him and my heart breaks for him. There are no right words, but just know that you’re in my prayers.

  3. Just wondering . . . have you looked into working with a counselor for young children with terminal diagnoses to see how might begin to educate Braden in a way that is age-appropriate for him, and allows him to express so many thoughts and feelings? I know it’s not in any way, shape or form the same, but when Lil Pumpkin was facing her open heart surgery the social worker who is affiliated with the adoption pediatrician we saw (who had a significant number of special needs kids as patients) had us speak with the social worker, and it helped us as parents work out “a script” of how to prepare a two year old, how to answer questions, how to comfort, and deal with recovery and ongoing body/physical/mental issues LP might have.

    Again, NOT the same thing, but my experience with that process got me thinking it might be a suggestion for you and Braden’s Dad to look into.

    HUGS.

  4. Becks — I have to start having those real kind of conversations with Grace now too. Check the blog in a day or so for my update on that…….she is growing so quickly and Marfan Syndrome is starting to affect her ability to do some activities. 😦

    Give Braden an extra hug — and yourself too.

  5. Tracey Sherrill said:

    Becky, I firmly believe that God chose you and Justin to be Braden’s parents for a reason…….you are the greatest gift he could have. My heart still breaks for all of you, especially sweet Braden, but I am so proud of the love you’ve given him and the wonderful experiences he has with your family. I love you! Tracey

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