Cleft palate is an everyday term in our house. Both of my daughters were born with a cleft palate. To most jaws will hit the floor followed by the response "both your daughters were born with a cleft palate?" I usually say "yes and my youngest is #8 in 3 generations". Than the questions start to roll in. OR someone will ask me advice about nursing their babies. I just smile and say I am the wrong the person to ask. The response usually entails "but you have 2 daughters" and I respond with a smile "your are right and I was unable to nurse either one". Than the questions start pouring which leads us back to the cleft palate question.
I have a dear friend who has talked to a couple of people that she has ran into who had a child with a cleft palate and they get talking about and she will share my story with them and they ask her how I do it. She responds to them because she has no choice.
My mom is visiting my sister in Texas and at church yesterday she over heard a conversation with a lady that has 4 children and her oldest was born with Pierre Robin Syndrome and her youngest was born with a cleft palate. While I am not familiar with Pierre Robin Syndrome, I do know that the child is born with a cleft palate because the tongue was forced up during development which caused the palate not to close.
Anyways mom over heard her and she started talking to her about me and my situation and all that we have gone through. So my mom shared my information with her so she can ask questions and get help and support. But as my mom and I were talking she told me I needed to started a support network or web page. I had to laugh because I was actually just thinking about that same thing a few days ago.
Doctors are wonderful, technology is amazing and a cleft palate is easily fixable. The Dr's run through procedures, what will happen physically they will watch grow and development. But they never touch on what to expect as a parent emotionally. They never tell you want you as the parent are going to go through, the stress, the worry, the struggles, the tears before surgery......etc. SO in talking to my mom she told me that this lady has a ton of questions and is struggling emotionally and wants the support of another parent that has been there, done that, has the sweatshirt.
On top of trying to start my own sewing business (that I have felt the desire/need to do I will be taking on another project of starting a website to offer support to others that have children born with a cleft palate. How? What will the content be? Will it be utilized by others? I have no idea I just know it is something I need to do. Even if I can help others get in touch with people in their community so they can receive the support they want. FABULOUS.
So here is to my new venture...........AHHHHHHHHHHHHH!!!!!!!