Wednesday, August 18, 2010

Window shopping

I am ashamed.

Quitting work to stay at home with Lily (and Gabriel) has definitely been worth it, but it has not been super easy financially. We make do, but not without sacrifices. Luckily, we had a little money in savings, along with frequent "surprises" in the mail to pull from during those months when we went "over budget." I try to have a positive attitude about it, recognizing that it's all for the very best, but there are days when I bemoan not having the courage to buy a pair of shoes or not really needing to buy a maternity outfit.

Then, just the other day, I hear about families living here - a child's room having nothing but a bed in it. A bed without sheets - just torn remnants of the plastic liner that comes on a new bed. I heard about roaches crawling around in broad daylight and broken pieces of furniture littering rooms in the house. I think the worst, though, is the concrete floor. I imagine this dull, hard flooring and wonder how much joy you can pull from that.

Yet I sit here in my carpeted, three bedroom, two and a half bath, two-story apartment. The one that has a dishwasher, a washer and dryer, our beds with sheets, more space than I need even when it might not be the amount of space that I want, and I wonder What in the heck am I complaining about?

I guess complaining about what we have (or don't have) is easy. . .until we see what life could really be like. If I think about it, I have everything I need, and even though it may not always sound like it, I am thankful. But when I certainly know it could be worse, that thought causes me to look around, suck it up, and stop wishing my life away on all that unnecessary stuff my longing heart window shops for.

I'm sometimes in that same situation with Lily. I see children with Trisomy 18 who are sitting up or walking or able to eat "normally" or who are reaching for their toys, and for a very quick moment, my heart wishes for more for her. But I know there are other children out there with her condition who suffer their own problems, many that are more severe than Lily's. That's when I stop and remember that I love Lily for who she is, not what she does or doesn't do, and I stop my longing heart from window shopping again. What AM I complaining about?

PS--I spoke to Dave about how we might provide families in difficult situations without hurting their dignity. We worry about the balance of helping others without insulting them. We have just received so much from friends and family, and we want to pay it forward to others who are less fortunate.


  1. We will always want more for our children. Our special lil ones and even our so called normal children. I think that is a mother's love! I know you feel so blessed by Lily but it is normal to want her to sit, talk, eat, etc. Annabel is just now what I call really sittting and she is 5 1/2. Never give up. as far as eating she drank til she was 3, then no more, she ate til she was 5, now no more. Even with progress sometimes our babies will regress. I love the pictures of your children at the beach. Did anyone mention to you that T18 babies are very sensitive to sunlight, to the point of it causing them pain. I saw signs of this prior to a year but didn't find out how really hard it is for them until she was almost 18 mths. old.
    Even though it caused Annabel pain she still wants to look directly at it. I guess form of self-stimulation (which I don't understand.) Thank you for the updates. I read but I don't always comment. I am praying for your entire family.

  2. In your window shopping shoes too...yeah keeping an eye on the bank account figures going down all the time!


  3. just found your blog on google alerts. my daughter has t18 and is 13 years old. it took her along time to do things like how up her head (2 years old) but she is a joy as a teen as she doesnt sass back, haha. kam was born in charleston. feel free to email anytime.

  4. Jude,
    For some reason, your profile wasn't able to be seen. If you wouldn't mind emailing me or giving me your email address, that would be great. Thirteen years old--what an accomplishment!