This Saturday we headed to our good friend Lauren's house for another Wolf-Hirschhorn Syndrome family gathering. I was very pleased that it was only an hour and 15 minutes away. I'm seeing mini road trips and play dates in my future:) I know I have expressed my deep love for these get togethers before but I'm going to yet again. These mothers and fathers know exactly what Justin and I go through on a day to day basis. They share our joys, our troubles, and our fears. The level of comfort I feel is not comparable to anything else that I can explain.
This WHS gathering was like counting down the days until Christmas for me. Not only were we meeting with our good friends once again but we were finally meeting Riley, Hannah, and Brandon all the way from South Carolina. I first "met" Hannah when I entered into this wonderful blogging world last summer. Through a link on Lauren's blog I saw this beautiful little baby girl that resembled my Tanner in so many ways. I sent a message to Hannah and we instantly became blogging friends. Riley is only 3 days younger than Tanner. Hannah and I went through birth, the waiting game, and the diagnosis at the same time (although we didn't know it then). She has been a huge help to me. Hannah just happens to be an occupational therapist (lucky Riley)and has given me tons of advice and even sent me instructional exercise guides in the mail. I of course cried upon meeting face to face with my long distance friends. It was so wonderful to finally hug Hannah and hold her sweet Riley. If you want to go back and see when I first met Hannah and Riley and I blogged about Tanner and Riley being twins click here.
Justin and I with Riley
I still think they look so much alike.
These are 2 of my favorites. The babies Norrah, Tanner and Riley.
.....and the mommies! Hannah, me, and Lauren.
Justin, Tanner, and I.
I blogged back in February about driving to Jersey to meet a new family that welcomed a baby girl with WHS in January. Laurie, Mark, and Kaylee were welcomed with big open arms for their first gathering. Everybody just loved passing sweet Kaylee around. She is still so tiny and just adorable.
I always get so caught up in chatting and holding the other kids that my camera usually ends up laying on a table somewhere and I leave realizing I took about 5 pictures. Thank goodness other mommies are on the ball and I can steal theirs. (Just kidding, I ask permission to use them first.) So, I don't have a ton of pictures capturing every special moment with every special child. Which brings me to the other reason I was super excited for this gathering. We had some special pictures taken. Lauren's friend, Holly, is an amazing photographer and offered to take pictures not only of the kids but of all of our individual families. I'm so excited to see them, share them, print them, and frame them!!!!!
I did try to snap one of the all of our WHS kiddos but I missed Karly so this is 7 of the 8 that were there. From left is Haley, Riley, Kaylee, Tanner, And Norrah. In the back is Jayna and Mia. Tanner is the only boy with WHS in this area that we know of. So, if he develops and crazy shoe fetish or shopping problem, I'll know why with all of these girl friends:)
I always leave the gathering feeling like I gained something. We talk about so many important things. Seizure medications, therapies, research studies, deletion sizes, hopes and fears.....all kinds of good stuff that is so easy to talk about with these friends. I even practiced some therapy moves that I've been having trouble with. Tanner's therapists make it look so easy to get him from his belly to the sitting position (going through the correct positions from one position to the next)so I asked Hannah for a bit of help. She makes it look so easy too with those OT hands. I seriously look like I'm wrestling with him when I try.
Another thing I love about our meetings is that our other children can play together. Although I tell Carter, who is only 3, that Tanner is a "special baby" and may be different than him and Tyty.....I know he doesn't really get it. I think this will help him get it sooner than if we didn't have our WHS friends. It's great for them to relate to the other siblings as well. They all play so well together while we sit and talk about our "special" babies. They interact so well with each other and the babes with WHS. Carter just loved Mia, Izzy was excited to hold Tanner, and Nat was the sibling of the day in the younger kids eyes. He played hide and seek with Izzy and Carter. At least for an hour into the ride home Carter talked about "I go see Nat". Nathanial is Haley's big brother and he "gets it". It's very comforting to see what a nurturing older brother he is. Watching him with his little sister and the other WHS babies is a precious sight. He is so nurturing and gentle. He's an amazing little kid and I hope that Tyler and Carter "get it" the way that he does.
Miss Izzy (Norrah's big sis) and Tanner.
Thank you Lauren and Ken for hosting this special get together. I love you guys.
I do actually have a lot medical updates to share. Tanner has a weight check today so I'm going to wait until tonight to put all of the medical updates into one post. So, I shall return tonight....or early tomorrow morning. Much love to you all.