Whew! I have officially read all of the blogs posted and commented on most of them…..unless there were more than ten. As for those, I was only able to comment on a few of them or at least the last of them. I’ve cried, laughed, and cursed but in the end I know our babies are or were here and have made wonderful changes in our lives. I can’t say it enough…Nathaniel wasn’t planned, but I couldn’t have asked for a better surprise. He has made me an even better person. I am hundred times more patient than ever, I’ve learned to downsize and prioritize-since I haven’t been able to go back to work, I have come to realize the importance of life, and to enjoy today. My entire day revolves around him….and I’m kinda embarrassed to say that I have used him as my reason to get out of things :0) Nothing important, just little things like laundry or folding clothes because all I really wanted to do was cuddle 🙂 I am however, more knowledgeable when it comes to medical issues and have always wanted to go to school to become an RN and he has made me want to do it even more. But now with my busy/hectic day I wouldn’t even know how to manage what I do PLUS school. Someday, maybe when he starts going to school. Back to my point. After reading all of these stories I worry and wonder about Nathaniel’s future. I worry that he may never walk…even if it is assisted, that he may never be independent, that he may never speak or carry on long conversations, mainly that he will be with me forever. NOW on the bright side….So what if he can’t walk!? So what if he cannot be on his own!? So what if he can’t speak!? So what if he lives with me forever!? I know that he was sent to ME for a reason. I love him so much and I am so lucky to have had him change my life like he did. Each time I’ve posted updates, I’ve had fewer and fewer “what if’s” and it wasn’t until just recently that I realized it. He’s has better control of his head, can sit up with assistance—whereas before, he would just hunch over, he is grasping and transferring from hand to hand, he is pretty vocal and when I put him in his feeding chair he mouths “pa-pa” and will say it, when I pour his Pediasure into his mouth he says “cu” for cup, and says “gu” as if he’s trying to say good. He still has “stubborn” issues when it comes to standing. It’s not that he can’t bare weight on his legs, he just doesn’t like to….stubborn. But I do know that he’ll continue to meet milestones at his own pace. I still go through some moments of sadness like when my niece and future God-daughter (who aren’t even a year old) come over and they are crawling around or grabbing at him, when they’re sitting on the ground by themselves playing, when they’re holding their cup or feeding themselves and he’s just laying on his back watching them. That’s when I realize how different he is because everyone just expects me to put him in a walker and think “BAM!” he’s gonna walk. I does hurt my feelings because it seems as if they think I purposely want to keep him “baby-ish” but I know I can’t change how they feel. What they fail to realize is that he has PT, OT, and Speech Therapy twice a week, Feeding Therapy once a week, Aquatic Therapy once a week, ST once a week and that I’m E-X-H-A-U-S-T-E-D. I know that I shouldn’t compare him to any other baby…..WHS baby or not. But it’s difficult when you don’t see WHS babies anywhere. I used to ask, “How old is your baby?” all the time, but now that he’s older and still so small, I find that I don’t because they usually ask me the same and then they look at me like I’m starving him or something. I used to explain the whole syndrome. But now, because I know I probably won’t see “that person” again…I usually just say that he has a syndrome. Now when they ask what WHS is, I do go into detail. I used to feel like I owed people an explanation, but he is not a syndrome….he’s my LOVE and he needs no explanation. It’s just a little hard to see other babies younger than him do so much more. I really have enjoyed reading about everyone’s kiddos and I am so glad to have found this website. It has helped me in so many ways and everyone’s stories give me hope. I can’t wait to read new updates and see new photos. Attached are a few pictures of Nathaniel preparing for his big brother’s football game….GO TIGERS!

 

4 Responses to Whew! Am I tired!

  1. LeeAnn M says:

    I would leave comments more often but I always have so much trouble with the darn captcha code…always after I write a novel in my comment:). I loved your post, Nathaniel is really cute and doing well and you have a great attitude for being so new to everything WHS. I thinks that’s so neat that you read through posts of every child on here. I really related to your words about people not understanding that your child might walk if they had a walker….it was so similar to things we heard about Brodie, still do so better get used to it haha. People just don’t understand how much hard work and therapy every little step takes, in crawling, walking, feeding, talking. Who would ever know til you are in our shoes that it takes 100 different stages for a WHS child to crawl when a typical baby just wakes up one day (literally for my second son) knowing how. It was so hard for me not to get discouraged by comments early on from well-meaning family, but just know we’ve all been there. Looking forward to hearing more about Nathaniel soon!

  2. Heather W says:

    Ha! I always get tripped up by the captcha codes too. Unfortunately when they’re too tricky, I just delete my comment and move on.

    I loved this post. I really relate to what you were saying about “owing” people an explanation. I am not consistent in how I handle questions and change my response based on a quick, intuitive assessment of their interest, openness, and general likeability. Someone asked my just this weekend, “So what’s wrong with him?” Needless to say, she didn’t get an answer. I just turned and walked away.

    And I had to laugh at the “So what if he lives with me forever?!” line. Because i’ve said those exact words to people. Many times. To be perfectly honest, I don’t know how i feel about it; I just hate the assumption that it would be the most awful thing.

    Nathaniel’s a cutie. I hope to hear more about him soon.

  3. Ross says:

    Guys, just a word on Captcha Codes…

    If you register a username at http://wolfhirschhorn.org/wp-login.php and log in prior to posting you shouldn’t need to jump through the hoops of entering codes each time.

    Let me know if you encounter any issues!

  4. shirley bidnick says:

    Captcha codes! I though I was the only person who writes stuff over and over and then gives up.

    I have been reading all of Nathaniel’s posts, and I am enjoying them like a good book. Children with WHS share significant characteristics and experiences, and so do the families who love them.

    I have had occasional twinges of amazement as I have watched countless babies who were born after Rochelle, grow up and surpassed her in abilities within a few years. The recent one is a one year old neighbourhood child who sat on the floor and played with Rochelle who was 30 at the time. Rochelle likes to sit and waves a sock in the air. The baby sat by her, picked up a sock and waved it like Rochelle. They watched each other perform and enjoyed the game and each others company tremendously. Needless to say the little girl outgrew the activity the following year. Rochelle is still playing it. So what. The unfolding lives of all children are fascinating. Their differences make it so.

    I am old enough to look back and see that the future doesn’t always turn out the way I planned, but it turns out the way God plans, and His plan is good.

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