One of the things that really surprised me in having a special needs child is the heavy responsibility and even obligation I feel to educate others. I am sure not every special needs parent feels this and I at times have felt resistant to it. When Maaike was still struggling and life was full survival I had another special needs parent encourage me to take my heath care concerns to our state representatives and that maybe I should be the one to "lobby in your state for the rights of these little kids." At the time I felt resentful. I battled within myself that just because Maaike came to our home doesn't mean that I have to be the one to change the world. Then Puj called me.
Puj was an answer to prayers in so many ways. It was a miracle for bathing and it gave me the perfect platform to share our story and let someone else do all the work. Its a product and a company that I believe in and all I had to do was sit in a chair and talk. I felt stronger after that interview. It was wonderful to be able to literally see how far we had come. It propelled me to start this blog.
So when a call came from our interventional radiologist asking us to take part in a local interview it felt right. Still my husband and I poured over the decision before agreeing to take part. Amazingly there are children coming forward with lymphatic and vascular malformations who have never received treatments or knew that someone could help them. Sadly some are past the point of response. So once again the opportunity to educate and hopefully help others fell into our laps.
(to watch the interview of us and another LM/VM family click here
and then select the 10PM Vascular Anomaly Patients)
What's next? I don't know. I still don't feel strong enough to march on capital hill, but I appreciate the confidence that other mother has in me and hope to be there some day. And when someone throws out hurtful things about exploiting my child I may roll my eyes, but will walk away unscathed knowing that they have no idea what my life is like and that we will continue to do or not do whatever we feel is best for our family and right and good. And so we march on.
That was amazing to watch. I can' t believe how good Maaike looks. When she said cat I started to cry.
ReplyDeleteI felt a need to educate as well, but you have been given opportunities for a reason. You do a great job.
Thank so much. I have been wondering how you guys are doing.
DeleteThat was great! Knowledge is power. Thanks for having the courage to do it!
ReplyDeleteexploiting your child?! What kind of people are out there? You are a champion for her, and your family. Fighting for her and through her, for others, takes great strength and courage. Good for you. Lucky baby to have a mama like you.
ReplyDeleteI'm obviously a little behind on my blog reading. I'm glad you decided to do the story.
ReplyDeleteThats awesome! I want to be like you! No...really...how do I get involved? Email me. With CeCe being only the 31 st reported case with her Syndrome I really want to get involved. See if I can help any other moms with children with similar situations.
ReplyDeleteGabby, I'd love to know more about CeCe. I just got connected to a company that creates networks and forums for rare diseases. I don't know much about them at this point, but I'll continue to investigate. Maaike had just turned 1 when we finally connected with another family with her same condition. It was really amazing for us. Lets be in touch.
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