By Michelle Martin who is a mother to twins with severe brain damage and other medical issues
My twins, Axel and Jaxon, were born prematurely at 27 weeks due to a rare condition called TTTS, and subsequently developed severe brain damage, among other medical issues. They both have cerebral palsy and may never walk, talk, or do other things many of us take for granted. Jaxon is also legally blind. There is not much hope given to parents of brain injured children. You attend endless medical appointments of doom and gloom and face obstacles to basic care at every turn. This is what I’ve learned after living this crazy life for 15 months now and meeting others with older children of similar diagnoses:
1. You will have to become an expert on your child’s condition and trust your own instincts because no one else is looking out for you. If you think something is wrong, it probably is. Don’t ignore your gut and fight to be taken seriously if necessary.
2. Your friends and family will never ever understand, even if they try to. Most won’t try. Their words will unintentionally hurt you every day: “Everything happens for a reason”, “my son didn’t do (x) until he was (x) months old!”, “they’re doing so good!”… yeah, cause good is not being able to move your body?
3. You’ll feel more alone than you ever have before. People don’t care about special needs children as much as you think they will. Many people think your child is a burden, that they shouldn’t exist, and that they’re nothing but a burden on taxpayers.
4. The ‘system’ is not in your favour. Government loves to tout ‘early intervention’ and all their programs. Social workers will talk to you. Appointments will happen. Less than 10% of all of that time will be useful or applicable to you. In the meantime, months slip by with no meaningful physiotherapy or other services that could actually help your child. It will anger you more than anything else in your new life. Find ways to fight that system.
5. Finally, your child is perfect just the way they are. Nothing is ‘wrong’ with them. A diagnosis does not define your child, it is only a part of them. Their disability does not have to hold them back. Barriers to accessing experiences are the real threat - accessible buildings, washrooms, schools, parks, movie theatres, etc. With the ability to access all the same places as everyone else, your child can thrive just like everyone else. Spend your energy removing barriers in their life instead of dwelling on their disability. Without barriers in the way, they will achieve more than you ever imagined.
About Michelle Martin
Michelle is a highly caffeinated mom to special needs twins, a former marketing agency strategist, writer and advocate for improved early intervention care for children with cerebral palsy in British Columbia. She shares her family’s journey on Instagram - both the ups and downs - to raise awareness of CP and prematurity. She lives outside of Vancouver, Canada with her husband, their Doberman Perry, and their warrior twin boys, Axel and Jaxon. You can follow her on Instagram and Facebook and read her blog here.
