There is a club. When some find out they are going to be a part of it they simply choose not to be. When others find out they are going to be a part of it they make the brave choice to embrace what they consider to be their "lot" in life. Others while embracing their membership, grieve for the dreams that may die. Many accept membership to this club as God's will for their family. Some like Jeremy and I voluntarily choose to join this club. I have met so many other families that are volunteering to join this club and they are some of my heroes as they have "joined" multiply times.
Thursday I was quite sure I didn't want to be part of this club anymore, but by Saturday I was so thankful I was. This club is the club of kiddos who have special needs.
On Thursday, Leo and I headed off for Children's Hospital to take part in their cleft palate clinic. It was our first time going. We were told to be there by 9:00 and that we would probably not be done till 4:00. In hind sight, I probably should have cancelled. I was tired. We hadn't had power since Monday night. Thankfully friends loaned us a generator, but that still only provided limited electricity and I hadn't been sleeping well. The short version of our day was that by 2:00 we had seen at least 4 doctor's none of whom added much to Leo's life. They all basically said - "your doing great, keep it up". At 2:00 (still not having had lunch) I asked how many more do we need to see. They then proceeded to list 4 more- one of which was the dentist (who I really wanted to see) and a psychologist. Telling me my child needs to see a psychologist basically put me over the edge. He is happy, he is non-verbal, he is two. I might have needed to see the psychologist after my day, but Leo not so much. I started crying. (Why I don't know.I was done, oh so done). The nurse not sure what to do with me immediately got us in to see the dentist and then gave us our walking papers and told us to go home.
There were probably 20 other families there, but my guess would be that for most, certainly not all, this was their yearly trip to Children's to have things checked in one day. The thing is some months, Children's is my second home. We see so many specialists there that to spend a day seeing more specialists who really aren't going to add anything to Leo's life is a waste of time in my opinion. Apparently, the cleft clinic is a yearly event. We shall see what next year brings, maybe by then Leo will be talking and able to really give the psychologist an ear full. At the end of the day, I decided I really didn't want to be part of the cleft palate club anymore.
Thank God for Saturday.
On Saturday, I headed out to Davisville Church where I participated in Caregiver Day. The leadership at Davisville has a heart for families that care for special needs kids and they provide such amazing care for those families. Caregivers day started at 9:00 and finished by 4:00, but I left looking forward to next years "club meeting". You would never know by looking at these women that they were part of the special needs club. Except, for the fact that we all looked tired. These were incredible women, who have chosen to see what a blessing their children are. They love their children and can not imagine their lives without them. They fight for their children. They battle bureaucracy daily for their children. They want what is best for their their child. They love fiercely and deeply. They are in it for the long haul. I had the privilege to spend a day with a group of amazing women. We were all treated to breakfast and a hot lunch on china dishes. They cleaned our cars while we were inside being pampered. We got haircuts, manicures, foot massages, hand massages, body massages, chocolate, eye brows plucked. We listened to each others stories and were an encouragement to each other. This is a group I want to be a part of. I left feeling relaxed and rejuvenated.