It took me a while to admit that we are one of "those" few...you know, special needs parents. I still have a hard time saying it. Its the stigma that comes with those words. I have often thought "I have no idea how parents of kids with special needs do it, nor do I want to find out." Yet, here we are...and it is somewhat normal to us. We are still living. We are still enjoying life. We feel somewhat normal...most of the time. Special needs parenting isn't all that different...
...most of the time.I came home exhausted today after spending most of the day at a cardiology appt (which was good, by the way) and a therapy appt for Nate. A good portion of the past couple of days has been spent getting a hotel and rental car for our upcoming trip to Houston and talking by phone with the neuroscience liason about the intricate details of the tests Nathan will have performed while we are there in a couple of weeks. Next week is full here with 2 therapy sessions and 2 specialty appointments before we head to Houston the following week...well yes, special needs parenting is a little different sometimes.Abby and I were playing a game a few days back when she looked up and asked "Is Nathan going to die soon?" The question startled me and made me want to wake up from the nightmare that was overshadowing my life at that moment. I picked my heart up from the floor and carefully proceeded with "No hun. What makes you ask that?" She told me that a friend had told her a couple of weeks prior that since Nathan had a disease, it meant that he would die soon. Abby had carried that on her heart for 2 solid weeks before asking me...a burden I wouldn't wish on anyone, especially a 6 year old. She simply adores her little brother, and it hurts me to know that she is affected so profoundly by circumstances that most other children don't have to endure or think about. I explained to her that while Nathan's disease was indeed serious at times, we are trying everything we can so that he can be healthy. "The prayers, the medicine, the oxygen, the doctor appointments...we are doing all of that so that Nathan may live a very long life. Just look at how great he is doing right now!" was my ultimate answer to her. Yes, special needs parenting is a little different sometimes.I have always had aspirations of homeschooling. I absolutely love seeing the little light bulb go off in the heads of my children when they learn something new and "get it". As Abby reached closer and closer to starting kindergarten, I realized that I had to throw in the white flag of defeat...I, the mom who thought she could conquer Mt. Rushmore and Mt. Laundry at the same time, could not "do it all". Taking Nathan back and forth to doctor appts and therapies was taxing on my physical and emotional strength, and after much prayer and deliberation, I realized that Abby needed to attend our local public elementary school. Thankfully, she has excelled in this environment more than I had ever realized could happen, and we are beyond happy with the arrangement.
Of course, pride still gets in the way sometimes...I took great pride in the fact that I kept Abby home with me and was able to teach her at home until she started kindergarten, and I planned to do that same with Emma. "A man's pride shall bring him low: but honour shall uphold the humble in spirit." Proverbs 29:23Due to an increase in Nathan's therapy and doctor appts recently, I have had to take Emma with me some. My best friend keeps her sometimes during these times, but she has 3 kids of her own, and I often feel bad for asking her to keep Emma so often (even though she will scorn me for mentioning this). Emma is a typical self-centered 4 year old, so an appointment directed just to Nathan usually ends up in Emma acting out in some way...which more often than not, ends in me being especially exasperated with her. The past few appts have been especially tough for some reason. At a therapy session last week, she couldn't understand why she couldn't interact with the therapist like Nathan does. When she overheard that Nathan would start therapy in the pool the next week, she broke down in tears while sobbing "Nathan gets to do everything, and I don't get to do anything."
I completely understood what she was saying. Therapy is fun...new toys, one on one attention, constant praise at normal, mundane daily accomplishments...who wouldn't love therapy for a toddler? And she is right...even though I have tried desperately to spend more snuggle time and one-on-one time with her lately, she doesn't have anything that is for her. She is stuck in the middle...being pulled from appts to therapies to picking up her sister from school to other functions. She is being left in the chaotic dust that is currently our life. Yes, special needs parenting is different sometimes.
After some parental discussions and setting aside of appropriate funds, we have decided to enroll Emma in preschool next year. She will be attending at a church within walking distance from our house...the school that my best friend's son is also attending so that she can easily pick Emma up if needed. This is something she will love...something that is all her own. Emma is beyond excited already at this opportunity. And while I can't help but think that I am pushing her aside for someone else to "take care of", I also have a huge weight lifted off my shoulders.
You see, even though our daily life seems so normal, and we generally live our lives laughing and dancing in the livingroom and sharing stories about our day around supper at the dining room table, I also admit that special needs parenting is different at times. It's hard...yet, it's more rewarding that most will ever know. It's just a...special way of life.