Sunday, April 16, 2006


Our recent doctor's visit was quite difficult...not just medically (the "head shape" issue and possible seizures) but emotionally.

This appointment was Max's nine month well visit, and the receptionist gave me a "developmental checklist" to fill out about Maxwell. As soon as I took it, I knew this was going to be challenging to complete. Do I really want to point out every single one of Max's delays? Do I need to be reminded just how far delayed he is? Do I want to know all the things he is supposed to be doing? Nope. Nope. Nope. But I thought well they told me to complete it, so I will.

So I am filling that out and a nurse comes in. Our primary nurse was not there yet, so this nurse was getting us started. (Our nurse that we see every week is absolutely wonderful and adores Maxwell...and the feeling is mutual!) Well this nurse was perfectly nice but apparently she had not reviewed Max's file before she came in....which was quite frustrating. I was already emotional because I was responding "no" to nearly every question in the developmental checklist. But then she started asking me questions as though Max was the normal run of the mill healthy child..."am I still breastfeeding, how many times a day does he eat," etc. Then she was asking if I had any concerns with Maxwell. ANY CONCERNS? When is there not a concern with Maxwell???

My eyes were tearing up but I didn't want to lose I was really trying to keep it together and just give simple answers to these very random questions. Fortunately our primary nurse came in right at that moment...and she was soooo wonderful about it all. She immediately took the form from me and said not to worry about filling that out and then gave me a big hug. She proceeded to give me a pep talk about the job I am doing as Max's mother and that Max will achieve 100% of his potential with me by his side. What I loved about that was she didn't fake it and say, "oh Max will be great...don't worry." No, she was honest and said it perfectly..."Max will reach 100% of HIS potential" and that is all we can ask for.


elle said...

that is all we in charge land ask for LOL for each and everyone of us to get to where we can and we have if that other nurse had look she would of seen how chaerge is an oxygen tank tube feeds monitors and all that other stuff that he has bet she didnt even bother to do that next one that does that just give them this blog addres san mine about charge and theyll know what we are all about or i hope there r still some out there that dont get it still love you xxxxxxxxxxx

Drew said...


Max IS doing great! He's just following his own schedule. You are a fantastic Mom and I'm glad you have that wonderful nurse that recognizes it. We miss you guys!


Menjiness said...

I love that nurse. Good for her. You are doing such a great job, keep your chin up and know that there are many more people then you could possibly even know or understand that we are all praying, rooting and cherring Max on!

Desiree in CA.

Steph said...

Thank goodness for your primary nurse! Love her...soooo sorry you had to deal with the other one. And that they gave you that form to fill out. Clearly they dropped the ball big time. Very insensitive.

Glad you posted about it...we want/need to hear about the good, the not-so-good, and the downright difficult times.

Love you,

Cathy Javersak said...

I love the saying the we all go to the beat of our own drummer. Just because Max's drummer isn't playing the same tune that other children his same age are doesn't mean his music isn't beautiful! Play on Maxwell! Your music has inspired so many of us! We love you and continue to pray for you and your Mommy!

Renee said...

I am so sorry to hear of your difficult day. You and Max have SURPASSED every imaginable check list out there. Please remember how far Max has come and don't let anyone allow you to feel anything less. I know it is easier said than done, especially, when you are caught off guard like that. On a positive note from today...Max looks so beautiful and normal that the nurse had no idea he has CHARGE syndrome. Hang in there Super Mom you are bringing your son to new heights daily! Love, Renee

Kirstin said...

WHAT I want to say about Nurse #1 probably isn't the most correct thing to write on a public blog. YOU ARE AN UNBELIVABLE MOTHER! Don't forget that. I told you - no one could go a better job than you. I'm sooo glad nurse # 2 - who knows you showed up. Or else your girl a.k.a “me” would have to come out west and hurt nurse #1 for upsetting you. That probably wouldn't be good for anyone!! Seriously, I'm sorry this happened...but, MAX must be doing excellent for such an incident to occur...Look at it from that stand point my dear friend. Love you...

MarkCoyle said...

Gosh, Amy, you are so brave to go through all of this. I wish, just for a day, I could take your place. You need a break!!! What a rollercoaster ride you go through every single day. Our hearts pour our for you, you know that dont you?? THat's about all we CAN do is pray, hope and WISH you and Maxwell the best.