Thursday, July 23, 2009

prayers for charge families

This morning Max and I head to Chicago for our second CHARGE conference. It is held every two years in various parts of the country and has approximately 500 people in attendance (100 with CHARGE).

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.

11 comments:

Eva and her 'rents said...

Have a wonderful time you two! I will reread your closing paragraph during my quiet moments of reflection. Much love, K

Abi Roman said...

What a beautiful post, have a safe, healthy and inspiring time at the conference.

Wishing we could all join you there,
Abi UK mummy to Mia 7, Ruby 3 a and Jake a gorgeous 20 month old superCharger xxx

Moriah Bettencourt said...

Prayers sent your way Amy!

One of these days I will be brave enough to go to a conference. xxoo

Stefanie said...

I hope everything goes smoothly for you Amy! We'll be thinking of you. I'll buy something extra at the store this weekend since you can't make it to the birthday sale.:) And you should know Elise is still planning on coming to live with you at some point!

Eva Nichole said...

We will see you both in the Morning!!!
Hugs,
Crystal and Eva

hannah m said...

Sweet Friend, thank you for sharing your heart with this post. I am absolutely keeping you and Max and other CHARGE families in my prayers. Much love, Hannah

Carolyn said...

Amy, You and Max are in my prayers for safe travels and a good time. Your post was very touching and I needed a tissue. Thanks for sharing your thoughts with all of us.
Love & Prayers,
Carolyn in WV

Leslie, Arlin and Katie Kauffman said...

Thoughts and prayers to all of you attending the conference this week. I will miss meeting all of you! I know exactly what you mean about the flood of emotions. We attended the conference in Miami four years ago, and I think I cried myself to sleep every night--beautiful time, but emotionally draining!

Shannon and Carey said...

Oh Amy and Max,
You are in our prayers. I hope you have fun and make some more friends and learn and grow! May this be a great experience for you.
Love and hugs from Austin.
-Shannon :)
Ok, give a lil kiss to Max!

Jennifer said...

Amy and Mighty Max - may your time away include safe travel, good times with new and renewed acquaintances, and encouragement for your life. Hugs to both of you.

Kristi said...

What an amazing, poignant post, Amy. Rings so, so true for me.

I could write an entire post within a comment, so I will refrain and do that on my blog at some point :-)

Thank you for sharing your feelings... so well stated... so honest.

I trust you had an amazing time from the pics you posted and the story I've already heard about a Mickey Mouse doll that was given to Max :-)