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I never thought of myself as a special needs mom

A bit of history, I had my daughter when I was only 18 years old. Docs were a little confused when she was born. I was induced at 36 weeks (because I was experiencing something called cholestasis) they say she was only measuring at 34 weeks. She weighed 5lbs 7oz. 18in long. She was just a tiny baby, so we thought. She was hitting all her milestones within range. Then when she was 18 months old she was siting on the bed bouncing and fell off. I picked her up, dusted her off and comforted her. For the rest of the day she would whine when I picked her up certain way. I thought she was just sore from the fall. She didn't cry just whined as if you touched a bruise. So after 3 days we finally took her in. Again we were young parents and didn't thing much could happen from a short fall especially since she was running by then and always falling. She was a tough girl, never cried for anything. Not even when she was teething. So to the hospital we go. They took her in for xrays and came back with a few docs to examine her. They asked to look at her eyes. And each doc took a long time looking at her eyes and her chart, asking many questions about her development. Then they asked her father and I if any one of us had a lot of broken bones growing up. I only had one from a slip and fall while camping. But her father said yes lots, he was a clumsy kid. So they told us she had a fractured clavicle but she will be fine. Gave us a sling to put her arm in and set us up with an appointment with genetics counseling. After a blood test and examination we had our diagnosis. OSTEOGENESIS IMPERFECTA (Type 1) It is condition that causes brittle bones due to a collagen deficiency. She was always on the tiny side but pretty much healthy not many issues, although she seen many specialist throughout her life. We never really thought we were different from any other families. Besides some extra doc appointments. Oh and we had to make sure people were just a little extra careful while playing with her. But I never held her back. Let her run with other kids at the park and at school. She taught herself how to ride a bike and roller skate. She took classes like any other normal little girl. Tap Dance & Ballet, Sign Language class, Arts & Crafts, Swimming and even T-Ball. It was all normal since we knew nothing else. She was always very independent. Never wanted my help. Very strong, brave and tough. She did have some other issues along the way like migraines and sleep apnea but nothing we couldn't handle. But as she got older, probably around the age of 11, her problems seem to go away. She became stronger and didn't need me so much.


Now she will be 16 years old in just 2 months. And things are starting to get scary. With her condition it stunts her growth. She is only 4'8" tall and is done growing. I look at her and think she still looks like a baby. She is learning to drive. And preparing to go to college in just 2.5 years. And now here comes the problems. She doesn't look her age and is starting to feel left out. Her size has never bothered her before. But she's having a hard time making friends and finding her place at school. Which has caused her to have anxiety and go into a deep depression. Being a teenager is hard enough and then to deal with her condition. As I watch her deal with this I can't help but worry more. What if her size does become an issue in the future? Will an employer take her serious when she looks like a kid? Will she ever get pulled over for looking to young to drive? Will she really be able to handle college without me? Will she find love? Will she be able to have a family? I know these are thoughts all parents think but with what is going on I am just soooooo concerned. She is seeing a therapist every week and is on meds (Prozac). Because of Covid and her anxiety she has been able to stay home and still do school work. But she's falling behind. She's an AP student but cannot keep up. And I can't help but think what if she does not get better. Don't think I'm just being negative. I'm a realist. I know what possible outcomes there are. But that doesn't stop me from worrying. And this is where "Special Needs Mom" comes in. I have to plan ahead. Is it possible she will always live with me? Will she ever be able to truly be independent?


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