Last time, Mom traveled with me and was able to provide support for both me and Maxwell. We went into it with such excitement to meet all the families and learn more about this complicated genetic disorder.
While that all did happen, I was not prepared for the overload of emotions. Whoa. Several of our friends experienced the same. It's a little difficult to explain...but I'll try. All around you are individuals with various levels of need. Some are fairly independent and others are profoundly disabled...physically, cognitively and medically. And then there are many in between.
Basically you realize "oh this syndrome doesn't 'go away'." Not that you think it actually does, but you have this belief that everything will be better in the future. (Optimism is a wonderful thing to help you enjoy life, isn't it?) Again, it is difficult to explain but basically I think God does a beautiful job of giving us this unconditional love and acceptance of our child. We think our child is the most wonderful/beautiful/smart/talented/funny child in the world. We don't see the disability. But when you are surrounded by other individuals with the same disability, it's more obvious. Does that make sense? I am rambling, I know.
On the other hand, being surrounded by others in this CHARGE world is the greatest blessing ever. You truly feel like you are with family and you are coming home. Many of the individuals with CHARGE look alike. They act alike. Their walk (envision a hotel of drunken sailors) and speech are similar. The parents speak (or sign) the same language. We get one another. If someone is staring, it is out of admiration and pride...not curiousity or fear.
No one questions why you are feeding your child directly into his stomach...or suctioning secretions from his nose and throat. Quite the contrary! You actually learn new ways to do it even better from other parents! And a fun little bonus is the sharing of "tools." Usually when you travel with a medically involved child, you worry like crazy if you have packed everything you need because you simply cannot run to the store for a gtube replacement or syringes. However at this conference...supplies are plentiful amongst the families. Last time we shared oxygen with another family!
And most importantly, you are with your friends and family who provide consistent, unconditional love and support to you online...as often as you need it. Once you see each other, no words are needed. You simply hold on with such love, appreciation and respect for one another and their journey.
While you are dealing with all the emotions of being at the conference, you also are overwhelmed with information. Of course that is a wonderful thing but it also can be...well, overwhelming! So many issues to prepare for...therapies to experiment...medications/surgeries to research...people to contact.
Yep, this is going to be one heck of a weekend.
And when planning for this conference months ago, I thought I could handle it alone. I must admit, however, that I am a bit anxious now.
So can I ask for your help? Please keep my family and all the families coming to the conference in your prayers. Pray for safe and easy travel. Pray for health for everyone attending. (Last time Max was hospitalized after the conference.) Pray for open minds and hearts so that we can learn and grow as much as possible from this experience. Pray for wisdom for the presenters. Pray for strength, peace and comfort for the families. Pray for acceptance of our life's journey and the strength to thrive. Pray for healthy and safe returns back to home.