Wednesday, February 15, 2012


Sometimes I really, really don't want to blog about a certain topic. But I know that I NEED to. I feel propelled. When I set out to devote myself to this blog about Jack, I wanted it to be the good and the bad, the happy and sad. This is real life. Sometimes it is really joyful. And sometimes, it is painful. 

I knew there was a chance it would happen sooner or later. But I just didn't think this soon.

We've started to get questions and stares.

Jack is different, but since we've been so isolated, we've largely been able to keep it all to ourselves. Now that we are out and about, part of groups, and seeing a much larger segment of the population, it's started.

Jack looks very normal. He is pretty darn handsome. He has a smile that will light up the room. And he's the center of attention a lot of the time. That's just what happens when you are Miracle Baby Jack.

But beyond looks, beyond the cuteness, you can see the effects of Jack's extreme prematurity. I desperately don't want Jack treated any different because he isn't typical. He is a miracle in every sense of the word and needs to be celebrated! But I know he has his idiosyncrasies and I know that because he isn't communicating, he has resorted to screeching. I know he can't talk and explain what he wants. I know his walk is unsteady.

The first time it happened was last week. Jack was screaming in frustration. I didn't know what he wanted (working on that whole communication thing), but we were around a group of people and I just wanted him to quiet down. Then it happened. A young girl turns to me and asks "why does he do that?" My heart went into my gut. I answered "because he is frustrated." I prayed we were in the clear, could move on and enjoy our time but that wasn't good enough for her. She was curious and at the age where (I guess?) you start to notice kids that are different. She asked again "But WHY does he do THAT?" And boy... if I was rendered speechless.

I just don't feel ready for it. I don't feel ready for the questions.

I came home and told Jon about it. And if I'm honest, I shed a few tears. We both agreed that we need to be ready for questions. Some will be honest questions from curious children. And some will be very mean. We discussed how to answer these, talked about the future and what it means for Jack as he grows up. Both of us just wish that Jack would be spared from getting his feelings hurt, that's all.

It happened again this weekend. A young boy asked "why is he screaming?" I answered as best as I could, based on his age and comprehension. The answer didn't satisfy. I told him that Jack is screaming because he wants something, he just can't tell me what it is. "Jack is frustrated." and he is "just learning how to talk." I told the boy how old Jack was. You see, I am still figuring out what the easiest and best thing to say is... without going into extreme detail. And maybe I wasn't clear enough, but the boy said "well, my brother is that age and he doesn't do that." Kids are so perceptive and if we are honest, they can be pretty cruel.

This topic has been so much on my mind lately. I read this article - My Child's Dream: To Have Friends - and truthfully, it made me weep. I am so desperately afraid of this for Jack. But it's the truth and we have to be ready for the possibility.

Please, if you do anything at all today, read this article.
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Emily Real said...

You are so brave, asking the questions head on. I am so impressed that you and Jon had the tearful conversation of how to walk through the questions that will be asked. Praying for you today. Thanks for being real.

Michelle B. said...

I really feel for you. We have had to deal with the same issues with Ethan and it can definitely be heartbreaking. We have to try to explain his behaviors to people and it is always uncomfortable. Ethan has made huge gains over the past few years, but he still has considerable difficulty interacting with peers. He asks why he doesn't get invited over to play with other kids, and it honestly breaks my heart. My husband and I were just talking the other day, and I said "Is he ever going to have friends?" We just keep loving and encouraging him, letting him know the people that he can always count on. I know that you will give Jack all the support and love he needs as he journeys into the world.

Beth Willmore said...

I'm sorry, that has got to be heartbreaking. I know you don't know me, but I've actually been reading your blog for a while from up here in Rexburg, ID and I pray for your little family all of the time. Jack is amazing, plain and simple. When I went back and read his story from the beginning and see where he is now I can't even believe it. You're a great mom and I can see that you love him so much. Keep up the good fight and if it's ok with you I'll keep up with you guys.

Anonymous said...

I read your blog every day, and I love Jack. I am so impressed with you and Jon and the love and attention you give to him. His smile just melts my heart. It's so special to see his Dad interact with him. He seems to have all the patience in the world with Jack. I just know that God does not give special children like Jack to just any parents, so I feel that you and Jon are very special to have been chosen as his parents. Take care and keep up the great work you are doing...

Alyssa said...

Oh Jessi, what a great thing to blog about. You are helping to raise awareness which will help us all! Thank you for that.
I think all parents in general worry about how their children are acting and developing, but with preemies we KNOW our children are going to act in one way or another a bit 'different' than other children their age. It's so hard when we're isolated these first few years because we really aren't prepared for the comments or questions, or even just the simple fact of noticing what others might...because to us it's 'normal'.
I still have trouble answering the question, 'How old are your girls?' because if I tell the truth I feel like I will have to defend them in a way by explaining that they were born 4 months early, etc. etc. and that is why they don't talk much or have certain skills that most other children of their age would. People will compare and people will probably make hurtful comments once in awhile (even if unintentional) but hopefully we can all teach ourselves and our children how to avoid letting it get to us. It's probably one of the hardest lessons in life, because words can be so hurtful. :(
By the way, I am hoping you guys are up for a trip to Missoula in early July, baecause we would LOVE to meet you!

Julie said...

So proud of your honesty and for sharing from your heart. So many people will be encouraged by this, knowing that someone else out there is asking hard questions too.

We love Jack and are thrilled that we get to be part of your life. And let's keep working on that screeching thing! :)

Rebekah said...

You can feel your Mommy heart through this post. Your and Jon's love for Jack and desire for him to succeed will make all of the difference in his world. Love you and Jack man.

Michelle said...

I feel certain that with that charming, infectious smile of Jack's, he will have lots of friends, but I understand your worry. No parent wants to imagine a friendless life for their child. I started a preemie mom support group that meets once a month for dinner. We are working on organizing some play dates for our little ones. Our little ones are on a broad scale of differences, developmental, social, and cognitive. I think it is going to be great to have play dates so our little ones can work on socializing, and who knows, maybe they will develop long-term friendships. I also think it is going to be a great lesson in learning about and accepting children who are differently-abled for my older daughter. Perhaps, you can start a similar playgroup where you are. It's a lot easier to be around other moms who "get it" than moms who have no clue.

Kathryn said...

I honestly think anybody would be Jack's friend. Those eyes and that smile are to die for! I think a huge part of how kids react is how their parents raise them. Of course, kids are kids. My nephews were raised that you don't stare or ask questions that may hurt somebody's feelings. They are the most gentle 10 and 4 year old you could see when they come across someone who isn't like them. They learned that just because someone doesn't talk, walk or act like they do, mean that they are not as cool as them :)