Copied from my Facebook page:
After days like yesterday, when we talked about Life a la Tim and Paige and you all get so supportive and affirming and leave us comments about how amazing we are and say things like we’re saints and angels and that there’s a special place in heaven for us I always feel like I have to loop back around and bring this story back down a notch. Thank you so so much for your affirmative comments – they make us feel so good and we love you for that – but we are not saints and we are not so amazing. We didn’t ask for this, we don’t think that god gave us this because we could handle it; we do it because we have no other choice. Seriously. We love Alex. But you won’t see us banging down the door of any special needs adoption agencies asking to take on more of this responsibility – those incredible humans are the real MVPs.
To be perfectly Real, we COULD do this all by ourselves. We could. If we had to. But then we’d be tired and stressed and likely miserable and have decreased quality of life. If all of our focus was on meeting Alex’s every need all of the time it would negatively affect our relationship and put our marriage at risk and we are NOT having that. So.
The truth of the matter is that like a mega celebrity, it takes a team of people to keep Alex alive and thriving and Tim and Paige married and sane.
We have services provided by Wabash Center- about two years ago I started leaving for work at 7am which put all of the morning caregiving burden on Tim so we modified our day services to have staff come in the morning to get Alex out of bed, feed him breakfast, shower and dress him, and transport him to Wabash Center for his day program. At the end of the day the staff from Wabash Center brought him home and stayed at our house with him until I got home from work and relieved them of their duties. Occasionally we decide we need a date night during the week so Wabash Center staff covers those night as well.
We utilize Alex’s biological mother Amy to share the burden. By the weekend we usually need a break so Alex still goes to his mom’s house in Indianapolis almost every Friday through Sunday afternoon.
When we vacation if his mom can’t take him then he goes to his maternal grandparents or his maternal Aunt Kelly and Uncle Johnny’s home (who are amazing and we literally couldn’t lead the life we lead without them).
Our amazing friends John and Julie are always willing to pick up our slack and spoil Alex with a milkshake while he’s in their care.
Mine and Tim’s parents are basically on call to help out.
I have friends who love Alex and are always willing to help us out if we need it (the fringe benefits of being a social worker with a multitude of Helper Friends at my fingertips).
If our adult children lived in town they would by default be on the short list to help out.
We have a rock star of a behaviorist, Sara Pycke, who we can call at any moment to help us through Alex’s sometimes wonky behaviors.
We have an amazing Medicaid case manager who helps us wade through all of the confusion that comes with Medicaid and the Waiver program.
We have ex-staff and people who knew Alex from school who come back around asking to see Alex and who are willing to help out.
We have an amazing pediatrician who is always available when we need her and who still sees him even though he’s a grown ass man now.
We have an amazing psychiatrist who has been with Alex since he was about 12-ish who has ridden this roller-coaster with us and LISTENS to us and that’s gold, right there.
We have a cool dentist who manages to check Alex’s dental health while he wiggles around in the chair and jabbers through the entire exam.
And even his hairdresser at Great Clips is patient and kind and god help us if she ever leaves.
We literally couldn’t lead the amazing life we lead if we didn’t have every single one of these people to help us navigate it. They are our heroes and if we don’t thank each of you enough, please know that you have all of our respect and gratitude.
Thank you for joining us on this journey, Tim and Paige 💙
seven20owen 