10 Things I Wish I’d Known the Day My Daughter’s Wheelchair Was Delivered
1. Accept the chair. There’s no denying it. It’s not a stroller; it’s a wheelchair. The day our first chair was delivered I didn’t even want my daughter to sit in it. “No, Chuck, there’s no need to have her actually sit in that. No, you don’t have to adjust it now. The monogram looks good.” My father-in-law asked, “What should we call it? A cart?” My mother-in-law asked, “You’re not giving up on her waking one day, are you?” I had many questions, a 2-year-old, a newborn, a dog and an optimist husband. Being an optimist is a good trait unless your wife is hormonal and mad at the world. Once I accepted that my daughter isn’t walking and that this chair is going to get her places, the chair became a part of our new normal.
2. Make the first outing short and easy. Only go to a place you know will be wheelchair accessible. What does that mean? If it was easy for you to navigate around that area when your baby was in a stroller, then it will most likely be OK for a wheelchair. As of now they don’t make wheelchairs with an attachment to carry the younger sibling. If you have another child under the age of 1, a good option is to wear a baby carrier.
3. Don’t make any major decision without considering the fact your child must use a wheelchair. We’d just moved to Georgia and were in the market to buy a house around the time Rebecca got her first chair. I desperately wanted to buy a one-level home. My husband wanted a newer low-maintenance house. So how did we end up in new three-story home? I said no, no, no until I walked in the master bedroom. Gorgeous. There was even a washer/dryer in the master closet. Our realtor said, “Your daughter is so little [she was only 2], and you should be more positive and think about her walking one day.” I should have said, “Dr. Realtor, walking and being able to use stairs are not the same thing.” But, I was fool in love and thought if I have a closet like this, surely I will not wear black yoga pants every single day. “Fantastic investment,” said the family member with three healthy girls. Did I mention I was hormonal and in denial? My crush on the closet cost us a lot of struggles, years of back problems and it led to my four-year affair with Nutella.
4. Get a handicapped parking tag. This is a necessity and it will make your life easier. Bonus: During the busy holiday season you will love your child even more than you do now because their parking tag will get you a parking spot by the entrance. Warning: using the tag when your child is not with you is rude, tacky, lazy and illegal.
5. People will stare. No, it’s not in your imagination. They really are looking at you, so pay attention to #7 and #8.
6. The most important advice I would give to a mom who’s getting their child’s first wheelchair delivered soon: Start building your team. Who are the major players on my team? Mothers who have raised children with special needs and those who help me take care of my daughters. When I need advice or support, the first people I reach out to are the women who have done this before. When I’m overwhelmed I call a person who I know will love to spend time with my kids.
7. Dress your child appropriately. This was easy for me until my daughter was in first grade. I looked at the other kids her age and realized I was dressing my first-grader like baby. I kept her hair short because we were tired of combing out the knots kids in wheelchairs get in the back of their heads. Even though she spent most of her time in a bright pink wheelchair, people often asked was my son. I hadn’t given much thought to the way she looked because I’d been in survival mode for years. My child has enough issues; the least I can do is to make sure she looks her best. No more “cutest baby in the world” bibs, and we grew her hair out. Yes, getting the knots out is a pain but well worth it when I hear another child tell my daughter, “I love your beautiful hair.”
8. Dress yourself appropriately. Ladies, unless you’re going out without your child please don’t wear a mini-skirt. Here’s why: Having a child in a wheelchair means you’ll be bending over. You get the picture. You don’t have to live in stretch pants, either. I buy longer dresses and short skorts (skooters) for outings with the kids. Recently my younger daughter asked me why everyone was staring at us at the mall. My heart broke, and I wanted to cry. So I put on my sunglasses and said “Honey, they must have us confused with the Kardashians and are wondering why we’re looking through the clearance section at J.C. Penney.”
9. I’m not going to lie; you’re going to experience some ugliness. At the same time, you’re going to see goodness like you’ve never seen before. Random strangers will come out to help you.
10. Your child is going to do amazing things rolling in that chair. He/she will do the things other kids do. My daughter who uses a wheelchair has played baseball, gone to dances, ran races and made friends.
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