Over the last month, Carter has tried and tried to pull to standing with support of the couch. And slowly over this last week, he has succeeded! A sight we weren't sure we would ever see in Carter's lifetime. One year ago from now, Carter was limited to sitting with assistance. He wasn't able to get himself to sitting or explore his surroundings. Today, he is very much mobile, alert and attentive to his environment! Seeing Carter pull up to standing and even bending forward to pick up a stuffed animal or blanket and standing BACK UP, is AMAZING! I find it hard to articulate words wonderful enough to describe how this has made my husband and I feel.
Ever since Carter's first palliative care meeting a month ago, he has changed! He was listening in that meeting and he heard all the horrible, sad things said about his potential. He seen me cry and sob in grief at the possibilities. I think he realized what his actions were causing because he is different; he is HAPPY and less fussy! He smiles and laughs majority of the day! Yesterday, we even ventured out to the grocery store as a family to see how well he would do. He did great and only had mild moments of being over stimulated, BUT he did great!
To many, these things probably don't seem like a big deal, but for our family it is life changing. My biggest hope is that these changes last! I hope that his new pain medicine will sit in the cupboard and collect dust. I hope that we can enjoy this summer with little limitations and many big adventures; Carter included in all of it! I hope that my husband and I can drop the shifts and start doing everything as a family unit.
This last year has proven to have many changes; many good and many scary. But we see light at the end of the tunnel and just hope that the walls don't come barreling in on us. But even if those walls do, at least we have a jack hammer on board to blast our way through again. There is still a lot of testing and appointments coming up which I anticipate will be the case throughout Carter's life. We have some ideas that may help Carter's quality of life as well as longevity and I am ready to conquer them at full speed. I am ready to tackle this next chapter in our lives.
Life is a roller coaster. It will never be easy and if it is, you aren't really living. I am happy today and that is what matters. I will handle tomorrow in whatever manner is necessary. But for today, I am happy and content. I am not taking these good days for granted and am taking full advantage of the snuggles and smiles. These are the sunny days that I want to remember way in the future when my skies are gray.
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