Parenting a "Normal" Sibling of a Special Needs Child

Jacob had his kindergarten check-up a couple of weeks ago. Healthy as a horse, of course. He had to get his 5 year old vaccinations, but no big deal. Lesley said he was a real trooper and didn’t even cry. Except a couple of days later when he went up to Lesley and announced, “Mom, I think I caught hemophilia from my shots.”

Jacob has put together shots with hemophilia, because “shots” is the word that we have been using to describe the thrice weekly infusions that Nathaniel needs to receive.

The word “thrice” should be used more often.

It seems to me a very natural connection in the mind of a 5 year old. “Getting shots” is the treatment for hemophilia. If Jacob received shots, he must have hemophilia, too. Since he didn’t have it before he got the shots, but he got shots anyway, then he must have gotten it from the shots. Makes perfect sense.

Jacob’s been the victim of another illness that we’ve called “Hezafaken Syndrome.” The symptoms are being able to breathe out, but not in, itchy spots under his feet, ear wax effusing from the ears, and being so sick that he cannot even muster the energy to run a fever. He’s had this and several other variants on multiple occasions over the last month or so.

Jacob has been more and more protesting that he is sick or that he has some other malady that demands immediate attention.

Caitlin has been showing some interesting behaviors, too. She used to be highly independent. She did not want us to help her do anything. Now, she wants to be carried through the store, sit on our laps at dinner time, drink out of “sippy cups,” and she has been exhibiting all kinds of physical injuries for which she needs band aids, Dora or Disney Princess preferred, thank you very much.

We’ve spent so much time over Nathaniel: the hospitalization, the subsequent pulmonary problems, the bleeds (averaging 2 per week in November) that required all of those hospital visits, the surgery earlier this month and the hospital check-ups since then, and now the thrice weekly (there it is again) visits from April, our home health nurse, to give him the infusions of blood clotting factor.

Jacob actually confessed at one point that he was feeling left out of our family.

I think I know the source of Hezafaken Syndrome. I don’t think it’s hard to figure out Caitlin’s new found clinginess.

Nathaniel’s physical health needs have demanded so much attention from both Lesley and me that Jacob and Caitlin are responding by “being sick,” being needy, reverting to what could be considered a younger stage of development when they are with us. They are increasing their need for us.

Lesley and I have tried to keep them involved. We want them to be around when Nathaniel’s receiving his infusions and breathing treatments. Caring for Nathaniel’s physical health will be a normal part of our lives, and we want Jacob and Caitlin to experience it as just what we do. We’ve even employed them to help out, especially with the breathing treatments where keeping things sterile is not as important (compared to the sterile environment necessary for the infusions). We ask them to help with Nathaniel’s bath time and changing diapers as a means of keeping them involved.

I’ve realized that’s a cop out.

The fact is if we ask them to help us give Nathaniel a breathing treatment or change a diaper or give a bath, we’re still focusing the attention on Nathaniel, not them. We praise Jacob and Caitlin for helping, giving them all kinds of affirmation about what a good big brother and big sister they are. But even that’s about Nathaniel. They’re good because they’re a good provider for Nathaniel. That doesn’t make them good in their own right, good just for being themselves.

That’s not to say we don’t want them involved in these things. We want them to be a good big brother and big sister. We cannot replace the attention they require, however, by only including them in activities involving Nathaniel. One thing we were told when we first learned that Nathaniel has hemophilia is that our lives should not revolve around his illness. It’s very hard not to let that happen, even in the way we parent our other children.

For the past couple of weeks, I’ve been taking Jacob out, just him and me once a week. He’s usually satisfied with going to McDonald’s for supper and then running an errand. We did some Christmas shopping the last time we went out. One on one, just the two of us. Interestingly, his symptoms seem to be abating a bit. We’ve switched his Wii day to the days when April comes. Usually, he can get so focused on the game he’s playing, that we can take care of the infusion and he hardly notices that April is there.

I’ve been spending more time with Caitlin, too. She has preferred my company lately to Lesley’s, becoming something of a daddy’s girl much to Lesley’s chagrin. She wants me to cuddle with her as she goes to sleep at night, wants to sit on my lap during supper, and wants to play Candy Land and Shoots and Ladders with me. I give her as much attention as I can.

Lesley, likewise, has been making more of an effort to meet with and be with Jacob and Caitlin in their own right. This is something about which Lesley and I have talked a lot. We are trying to let Jacob be Jacob, and to know that is pretty awesome. We want Caitlin to be Caitlin, and to know that she is beautiful and good because she is Caitlin.

I want Jacob and Caitlin to know that they are good in and of themselves, not only in their relationship with Nathaniel. Lesley and I want Jacob and Caitlin to know that they are important to us because they are important to us. Lesley and I want Jacob and Caitlin to know that we love them deeply, just as much as we love Nathaniel, not because of what they do for Nathaniel.

I don’t want Jacob and Caitlin growing up with resentment towards their brother because he got all the attention, or believing that they need to be sick in order to get attention themselves.

So, Nathaniel demands A LOT of attention. And we have 2 other beautiful children who need attention, too. And it is very easy to let the 2 other beautiful children “take care of themselves” in favor of Nathaniel’s immediate needs.

This is not an easy problem to solve. It’s one of those that demands moment by moment awareness. It’s one that requires that we as parents be in tune with the subtle (and sometimes not so subtle) cues our children give us. It’s one that requires faith.

I go back to what I wrote in an earlier post. I’m becoming more and more aware of my own inadequacy as a parent. I don’t know what my children need all the time. So I walk by faith. I believe that God will guide Lesley and me. I believe that God has given us all 3 of our children as beautiful gifts. I believe He will not abandon us to walk this road alone.

Lesley and I know that we need to address Jacob and Caitlin as Jacob and Caitlin, not merely as Nathaniel’s big brother and big sister. Doing that, with Nathaniel’s special health needs, is very hard, time consuming, and sometimes exhausting. Jacob and Caitlin are worth the effort, though.

I mean, they’re a couple of pretty freakin’ awesome kids.