Tuesday, February 26, 2013

The 1%

99% of the time, when it comes to Benny, I really try to look at the glass half-full. Considering the battle that Ben waged for his life, I am just filled to the brim with gratitude to even have Ben in our family. The miracle of having Ben on this earth at all is not lost on me. I pray day and night, thanking Heavenly Father in earnest, for the gift that it is to be Ben's mom. Aside from the miraculous circumstances that have enabled Ben to be with us, I just plain like the kid. He is a very special little boy. Like I said, 99% of the time, he is just an absolute joy to be around. He literally exudes light and brightens the spirits of all those with whom he comes into contact. He is pure. He is loving. He makes me believe in miracles. I love him.

But, boy, that 1% can be a doozy. As a sidenote, I would never want to publish anything that may become embarassing to my children in the future or that may be interpreted as a put-down against them, so my thoughts are shared here to further credit Ben's great strength and ability--that despite some of his/our challenges, he continues to persevere and amaze me with his accomplishments. This past week, the impact of that 1%--those moments where the challenges of raising a special needs child causes deep pain, where it usually only brings great joy--has felt very heavy on my heart.

In addition to the daily minor battles that I encounter with Ben (which have a very real cumulative draining effect), including: carrying him (all 40+ lbs of him) to/from the store/church/building to minimize his hyper-sensory reaction to cold and wind, engaging in a battle of wills at each mealtime to encourage him to eat anything besides dry cereal and crackers, singing the ABCs while we bathe or brush teeth to soothe him through the difficult sensory stimulation, picking up endless trails of q-tips, legos, puzzle peices, cups, toilet paper bits, dominos, or any other object that Ben finds comfort in hoarding and collecting, or of course the daily regimen of therapy interventions, and the list goes on...an on....there have been a few incidents this past week in particular that have caused me to hug Benny a little tighter and whisper, as I do everyday, "you have an infinite potential " in his ear before bed.

Just one example, this morning a very sweet, very honest, neighbor girl came over to play with Max. She was at our house all of ten minutes, when, referring to Ben, she asked me, "why is he still a baby?" I think deep down I knew what she was really asking, but I tried to deflect acknowledging the meaning of her question by responding casually that, "Ben isn't a baby, he's almost three!" Her rejoinder left me raw: "I know, but why is he still like a baby?" Gulp. Swallow. Blink. The best I could come up with, "Benny is just the way he is!" The little girl seemed satisfied with my vague answer and joined Max in play, but I felt as though an unintentional knife had been plunged deep into my heart. This episode follows a rather dismal developmental assessment of Ben, a growing stress towards Ben's nearing entry into district preschool, and a period of difficult behavior issues with Ben.

Rewind.........mere moments after our neurologist apologectically shared the news with us that our five-week-old son had suffered a major stroke and that his future would likely be full of challenge, I remember being asked (as a gesture of comfort I'm sure) whether I would love my son any less if he didn't play on the baseball team. Utterly devastated at what I felt was the crushing of my child's potential, I responded that, of course I would love Ben fiercely regardless of his abilities--but I would HURT deeply for him if he wasn't able to do/participate/enjoy all of the activities and experiences that I want for him as his mother. With the simple question of a four-year-old neighbor girl, I felt I was brought right back to that day in the PICU, uncertain what the future holds for my child and stung at the suggestion that this world might not give him just as much as it gives everyone else.

I'm strong. My faith is strong. I don't forget for a moment how lucky I am to have Ben and how much he contributes to our family every single day. I am so abundantly blessed and feel ungrateful to complain about my silly struggles when others bear so much. I wouldn't trade it for anything. But, I also want to recognize that sometimes this road has its bumps and sometimes it still hurts.

Although my heart feels a little hurt today, once again imagining my son NOT playing on the baseball team, I know that the 1% is what makes my journey mothering Ben....beautiful. I will love that boy with everything that I am, and never stop whispering in his ear that he DOES have an infinite potential, regardless of where our road together leads.

I love you, Benny. Always and Forever. No Matter What.


Megan and Keli'i said...

He is such a beautiful boy and is so lucky to have such an amazing momma. This was beautifully written.

Mindy said...

I agree, beautifully written! It is so eye-opening for me to see from the perspective of the mother (as opposed to the sister) of a special needs child. I think you are doing a fabulous job of being positive and enabling Ben to have the best life possible. He might not be able to do a lot of things in life that his brothers get to do. When he is 30, like my sister, there will probably be heartbreak. Not to overlook or minimize the challenges in this life for my sister, or Ben, or those closest to them, but our family finds solace in knowing there is soooo much in store in the next life for Jami. I can't even imagine it! Same goes for Ben. He is going to do some amazing things and he already has. Love you Court and I sure love Ben. Thanks for sharing your thoughts.

Kelli Radmall said...

I havent checked blogs for a while and I missed all of your awesome cruise pictures and such. Looks like it was amazing!

Thank you for sharing your beautiful thoughts about sweet Ben. You are just the perfect example to me and such an incredibly hard working, patient mom. I have always noticed your strong commitment to your job as mother and your purposeful parenting. I can tell that you take your sacred resposibility very seriously (and yet you always do so many fun things!) and that is just perfect for your boys and so admirable.

I can only imagine the difficulties, hardships and sadness that sometimes accompany your journey with Ben. I always say that I think it's ok to admit that things are hard sometimes. I think it helps us be honest with ourselves and I know it helps others to be able to see into our hearts and express the love and support that we are hoping to share.

I love you Court, and your darling family. You are such a strong woman. You amaze me.