I remember feeling an overwhelming sense of vulnerability when Alexandria was born that afternoon October 6th, 
2007. I don’t know why that should have been we had done all the birth classes. When she was born I knew this little precious girl of mine needed an awful lot of care and protection. It is funny looking back and remembering this – and how accurate that feeling was.
Alex is a 4-year-old female who has been diagnosed with an incurable disorder, Rett syndrome. Rett syndrome is a Neurodevelopment disorder due to mutations in the MECP2 gene on the X chromosome. She has been identified with a unique mutation, c.298C>G (p.L100V), in theMECP2 gene. This a rare incurable diagnoses that causes severe developmental disabilities and physical disabilities.
Alex’s disability has inflicted itself all the way throughout Alex’s’ inner and outer extremities resulting in intensive medical needs. She requires full time assistance with all major areas of her life, i.e. feeding, bathing, walking, toileting, and personal hygiene.
Raising a special needs child is a full time job, requiring patience, finances, time, and energy. We as a family are always looking for ways that Alexandria can live a balanced, fulfilling life. Even during the storms we find ways to adapt and even be strengthened in the course of dealing with the our daily challenges.
We realize we our not victims of circumstance in a chaotic, incomprehensible world, with God we are in control. We have seen successes in our daughter’s life and in my own. We have seen resource pull tougher for equipment, therapy, and adaptations. We see the positive aspects of our lives and know God is not done. As a family we keep looking for ways to overcome restrictions, symptoms, and failed attempts to find solutions. We are not hopeless, and we have the strength to deal with ongoing challenges.
One thing I am sure that will never change – is that we our devoted to Alexandria. I still remember that feeling of vulnerability when she was born as if it was yesterday. Only now do I truly now how vulnerable she really is. I have also learned about myself that I have got a degree of staying power that I was simply unaware of before. I am pretty proud of that and I realize that to care for Alexandria as best as possible – simply take each day at a time.
This has rung true for our current home modification project for our daughter. Taking one day at a time, and even just taking one part of the project at a time has been important on this journey of modifying our house for Alex. I have also taken some tools I learned in the military. As Veteran of the U.S. Army, I learned to be resilient, how to stand in lines and wait your turn.
These have helped me to keep going to knock on countless number of doors. Even though some said no to helping, I have kept knocking. Some may have given up, but having an end goal of helping your child is a strong motivator to keep going. Having this goal and motivation, I learned that even though the economy is tough and businesses are struggling, are are plenty of organizations and individuals who are willing to help provide love and care for Alexandria’s home modification.
Many businesses just want to be asked. If I never asked, I would never have known if they could help. Being fearless, and not being scared, is what helps a person win the race. This is not to say I am not scared of asking people for help. Instead what I am saying is it is what you do with the fear that makes a difference. Do you let it control you? Or do you still keep going? For me I still kept going.
This has lead to such a big community involvement, from small companies to large companies, to even just people. I have learned the importance of advocacy and being humble. Both of these can make necessary change happen – change that will make a difference in my daughters life.
I hope you have the staying power on your journey. I hope you meet you goals as we are doing every day. If you would like to find more information on our project please go to www.Poulsenhomemodification.com.
By Joshua Poulsen