20150925_115121Well, its been a little while since I’ve posted an update about Nathaniel. He recently had a Nasal tip reconstruction and the right nare had to have bone shaved since it was completely obstructed. Other than that, he’s been doing very well. I was a little saddened last night though and it’s carried over today. We have a cousin who’s daughter celebrated her 5th birthday yesterday….and well, Nathaniel will be 5 this January. It wasn’t until last night that I realized that he will “NEVER” truely be like the other kids. I mean, I’ve always said it and meant it, but that saying hadn’t really “hit” me till last night. As I watched her play and run and ask for cake and cookies and get excited to open her gifts, it really “hit” me. The little cousin always looks out for him and it’s so sweet. But even she notices he can’t talk or walk or want to play with anything other than his tube that connects to his extension. He’s still so baby-ish. He’s begun to make higher pitched sounds, still hops around like a super fast bunny, he does stand and climb things like a little monkey, he even reaches for things and pushes things away with his feet like an extra set of hands….it’s really cute. I mean, he does so much more than when he first started any therapy, but it still makes me a little sad. I guess I expected him to be doing so much more by now……I know I’ve always been positive when other parents have posted things about their babies not doing much by a certain age, and I know that “no two babies are alike” and I know it’ll take time, but when I read posts about others walking and signing and eating and even getting themselves dressed and MY baby isn’t doing any of it….it’s kind of hard to stay 100% positive. I mean, I’m not going to change how I feel and I’m not going to stop pushing him, but it’s just a little sadening I guess…. I guess I 20150918_101955-1~2just had to get this off my chest. The good thing is that he hasn’t had a seizure in 5 months, hasn’t been hospitilized unexpectedly, and hasn’t really been sick. That’s an accomplishment initself. I know he’ll do more things in time, but the “reality” of it all hitting me just kind of caught me by surprise last night. Well, thank God I have this website to help get it out of my head. I feel a little better already.Screenshot_2015-09-22-13-32-23-1


7 Responses to Caught off guard…

  1. Shirley Bidnick says:

    Nathanial is changing. I wish you had posted more photos. He does look like a more grown up little boy, not a baby. Your feelings are normal. There is optimism and then there is reality. We need to balance both. I accept and love Rochelle just as she is, but there are moments like the one you describe when I see her in contrast to someone her age and I need to come to terms with her limits. I don’t live my life comparing her to others, but these moments help me process the facts. Rochelle is more severely affected by WHS than some. This site has shown me the wide range of ability/disability of the syndrome. I can rejoice in the accomplishments of others, and still be proud of Rochelle’s more limited achievements. I know that everyone with WHS and without it have their own strengths, limitations and life challenges. It is okey to feel the way you felt that day. It is good to share it. It is how we learn to accept our children for who they are and are becoming.

  2. Damien Douglas says:

    This is a lovely article, very honest and reflects the reality of what it is like for us as parents trying to accept our children as they are rather than as other able bodied children are of the same age.

  3. Nour says:

    Hi, well first of all, you have a really cute boy which i know that he will be much better everyday .. I know how you feel, becuase i feel exactly the same, my niece is same as my duaghter age, and she so different than my duaghter, my duaghter will be one year on December, and she cannot support her nick yet, she weights 5.300 kilos and still wearing 0-3 size .. When i compare btween them i feel really sad .. But then i was thinking and discussing with mu husband all about our duaghter, and we become so much better.. You should put in your mind that your son is unique, this is a gift from god, and everything comes from god is perfect.. God knows what’s god for us and what’s not.. This is god plan for us, who knows this baby might be the reason for us to go to heaven .. Dear be positive dont compare your son with any other babies or kids, your son is a way better than millions and millions of others outside .. You should be very thankful to god becuase he gave you this cute boy, don’t think about tomorrow no one knows what will happen, think day by day, and let everything in god hands, he gave it to you, and he is gonna manage his life to be a perfect happy life.. Dear as long as you are thankful to god about having this boy, god will make you happy and everything will be easy .. Just pray and ask god to take care of him and help you to give the care he needs.. Parents like us gods love them more, becuase gods knows that you are good mother, and you are able to take care of him that’s why he chosen you .. And so do i and all other parents here .. My advice to you thank god everyday about giving us this unique kid, no one can have .. It’s you becuase god love you.. As long as you thank god things will be much better .. You know what, i love my duaghter so much, and i can’t imagine my life without her .. Thanks god for everything you gave us .. Thank you !!

  4. letty says:

    Awwww! Thank you! That makes me feel better. I know I’m not the only one who has ever felt this way, but it’s nice to hear others say it from time to time…also. I’ve added before and after photos from his surgery. It’s still a little wierd that he has a little tip…good wierd!

  5. Keely Absher says:

    Hi Letty,

    So glad you posted this message…I’m a new WHS mom to baby Paige who is now 5 months old (I should do my own update, lol). By posting this, you have prepared me for what to expect in regards to my feelings. I think there is something called Chronic Sorrow, which sounds like what we will go through on this journey. It must be so hard in certain situations, because we all want so much for our kids. I can’t give you advice, because I haven’t been in these shoes (yet), BUT I wanted to at least say thank you for sharing these thoughts. Give Nathaniel a hug from Paige 🙂

    Best wishes,

    Keely Absher

  6. Anitra says:

    Thank you for sharing. I know what you mean. I really thought Elsa might be walking by now, or standing on her own, or crawling. I want that independence for her, but for me too. She is getting so heavy, and I worry if/when she will be able to get around a bit. We wonder if we should start looking for a ranch house, sometimes, as the stairs seem to get more challenging every day. I don’t think it’s possible to be 100 percent positive. Sharing when you are in need of support is just as important as sharing a victory. We can all relate to the way you’re feeling. Just outside our community, reality sits. Please continue to share, we are all so invested in Nathaniel, and YOU!

  7. Mariana Perfetto says:

    Hello. We all have our moments. My daughter will be 20 in December. We were told she was one of the more severe cases. Yes she will never run, call me momma, eat a slice of her own birthday cake. But she loves holding hands, music. Simple things make her laugh. She has been called a social butterfly, told that she communicates with her hands. She has touched many people with just holding hands and smiling. As the years go by your child will show you what makes him happy. Hang in there and remember one thing. Our children are unique.

    Simply a WHS Mom,
    Mariana Perfetto

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