The days seem to fly by so fast with a baby in tow at home. A few feedings, diaper changes, naps and baths and the day has flown by so quickly. Today was no exception and I just wish I could etch each second with Lucas in my soul and stop time for a while and really be present in each moment spent with him. In practicality, food needs to be prepared, the house needs to be cleaned, etc..Maybe because of his condition, I feel as if something is going to happen to him and I have to distill all this bonding before such an event happens. It's probably not a healthy way to think but the IDIC 15 Alliance has issued a SUDEP warning which stands for sudden unexplained death .......Researchers have found that some of the children with this condition die unexpectedly and nobody can find a reason why this happens - somewhat like SIDS but in older children. The thought of it makes me so very sad and I try not to ponder such an event. I am declaring to God, the universe and all creation that my son WILL walk and talk. But, as evidenced by his play at the kids play area at the mall today, I have a feeling God's ressponse may take some time.
While toddlers younger than Lucas were walking and interacting with other children and their caregivers, my Lucas was having a hard time just standing and getting his balance and establishing proper gait due to his ataxia. He crawled pretty well to get to an activity station but I could tell the physical exertion was making him tired easily. Upon my coaxing him to play with the toys attached to the walls, he seemed myopically fixated at repetitively spinning one toy item. And, instead of showing interest at climbing toy cars, buses, he seemed pleased just to gaze at his hand and laugh at it. One part of me thought,"well, he just wants to be a baby a little longer" and I found it cute. But, another part of me felt very sad that he was missing out on being like all the other kids, being normal. As a baby, children are not judgemental of differences, but I wondered how he would be accepted as he gets older.
Once again, sad feelings takes me into a deep philosphical thinking mode about life and the meaning of it all and I waste precious time asking myself rhetorical questions of why, why, why? Once I get into the thick of it, it gets so hard to snap out of it. But snap out I must, for I am now a mom of a special needs child - words I never thought would be uttered by my lips. And with that comes a very disciplined lifestyle and a deeper kind of trust and faith in God's plan for good. At least, that is how I choose to believe. Maybe on another blog, I will address all the crazy as well as the profund spiritual rationales I've come across. For now, I sign off for my precious Luki has fallen asleep next to me and I want to gaze a little longer into his sweet little face before I fall asleep myself.
Good night.
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