We’ve met before, but I know that you’ve met a thousand unknown people. I’m K.D.; P.G. is my brother.
Anyway, I had a baby, G—-, mid-November who has hydrocephalus. She spent the first twelve days of life at Primary Children’s in the NICU. They placed a shunt in her head and she seemed to be doing great. Now here we are again just a week later to have the shunt replaced. We will be here another week, if all goes well. If any infection shows up we could extend our stay two more weeks.
G—‘s prognosis is unknown. Her brain may or may not develop normally, though she will have a shunt for the rest of her life.
You have talked about Hyrum and I know that he has special needs. So, how do you do this? How do you juggle homeschooling in the midst of crisis? My children (we have 7 kids – ages new-11yr.) seem to have forgotten that they have parents, not to mention that they are supposedly getting a leadership education. When the crisis is over and G—-is home, then what?
If you have any thoughts on this I would really appreciate you insight.
PART 1, The Family
I do remember you, K—. As I recall you couldn’t be anyone but P—‘s sister. I am so sorry for your struggles and heartache. PCMC is truly a miraculous place, is it not? Hyrum also has a shunt, which was placed when he was 5 months old after many weeks of our resistance in hopes that his ventricles would drain spontaneously. During that time he had an EVD (external ventricle drain) which was placed through the fontanel. He has been one of the extremely fortunate ones; that initial shunt is still in place almost five [now eighteen] years later. I understand we are on borrowed time.
I take comfort in the thought that technology marches on, and by the time he needs a replacement (still praying that day never comes) the options will be more reliable, more durable. I do have some very dear friends who had a 2yo son revived from 45 minutes at the bottom of a swimming pool. He had to have a shunt placed (and this was over 20 years ago) that they never had replaced. So, in our case as well as theirs, the shunt either kept on ticking or the body actually did recover ability to drain the ventricles spontaneously. Nobody’s going to open them up to find out which.
I remember as a young person having a real affinity for disabled and elderly people and enjoying serving them. And yet, I wondered what it would be like to be the parent of such a child. Everyone says they’re such a blessing, you love them just the same, but… they’re not the same, are they? How does that work? Doesn’t your heart constantly long for what cannot be? How does one live with such discontent, such regret, such disillusionment? Don’t you look at disfigured countenances or atrophied muscles or whatever the case may be, and feel–I don’t know—uncomfortable? Embarrassed?
In answer to my own long-ago question: I can attest that Hyrum is “just” my son. I don’t have any idea what it would be like to try to raise him under different circumstances, how I would feel about other disabilities or challenges; but I can say unequivocally that I have no part of my heart that isn’t just pleased for who he is.
There is the mother in me that worries about what surgeries he might have to have, that feels frustrated that I don’t know sometimes if he’s in pain or just tired or bored or just wants me to hold him. But it’s not all that much different.
I worry about Eliza’s insecurities and what she will go through in puberty. I worry about Oliver’s ambivalence and the way he sometimes feels emotionally disconnected from others. I worry about Ammon’s flightiness and if I am really reaching his heart.
I love all the children for who they are, and I worry about all of the kids in different ways. But not differently from the way I love Hyrum and worry about him. It’s just his life, and I’m just his mom worrying about him. Luckily, my temperament is not one to struggle with what might have been or how it could be.
As to the family culture, and leadership education: I sat down with the kids when Hyrum was a year old and told them, “I’ve had a lot of babies, and I am pretty much their caretaker, with a little volunteering from the family members, until they can do for themselves. But Hyrum isn’t going to be able to “do for himself” for a very long time–maybe never. He’s not just my baby now; he’s the family’s baby.
You have friends that call you after school to see if you can play. You have friends that go to movies and activities with virtually no thought other than whether or not their homework is done. That’s not the life the Lord planned for our family. You know the P—- family down the road? They have a 16-year-old Downs brother. You know where 14 year old C—- is every afternoon? He is tending J—- while their mom and dad and big brother are all still at work. That’s his life. That’s your life. Heavenly Father decided that for you to become who you need to be, your early years are not going to be as carefree as most of your friends. This is who we are as a family.” They solemnly agreed that this made sense, and that they would pull their weight.
This, not Hyrum’s needs, has been my greatest heartache. There have been times when I wept bitter tears over the burden they were called upon to bear. Ever since Hyrum’s birth my health went in a steady decline, such that when the girl just younger than him was born I could do little more than care for her. The family members all had Hyrum in shifts around the clock. After our last was born a year ago, I absolutely crashed. I was bedridden and frail for 8 months afterwards, and still am very delicate. Sometimes for weeks at a time I cannot function at 100%. Whereas our family culture has always idealized the sharing of household chores and responsibilities among everyone, it has not radically altered the level of contribution required of the individual members.
And while my submission and peace are qualities I can attribute to my religious faith, I am not a fatalist. I do believe we have choices. For example, during the time of my greatest stress, I applied maybe 80% of what I believed would have been the ideal for my health. Sure, I don’t smoke or drink; but I have been inconsistent in avoiding foods that weaken me, for example, or in getting the rest I needed. So I could have made a difference there. Woulda, coulda, shoulda. Not that I feel that I’m being “punished”–just that I’m ill-inclined to feel like a victim of life, and I believe that my principled choices might have made a difference.
That being said, I do believe that in the context of making principled choices and honoring covenants there are trials that we will not avoid. And that in that same context, the trials that come our way are consecrated ones, and we can trust the outcome to be for our own good, to fulfill the Lord’s plan for us, and to glorify Him.
I’m afraid that rather than offer you comfort and encouragement I have burdened you unnecessarily. Let me just sum up with this: my children are having a wonderful life. I have virtually no concern for them losing sight of what really matters. The are all mission-driven and firmly on the path toward making and keeping commitments that will bring them joy with their families and toward making a difference in a world that needs leaders who accept challenges without fear.
Some people wait until their mid-life to come to terms with the fact that they will not realize all their aspirations, and that their lives will not be easy. My children have no such illusions. In their place, they have a very real sense that the Lord will sustain them in all that they do for good, and that they do not need to wait for easy times to have good times. What a gift! What a comfort! Perhaps some would argue that they have been robbed of their childhood, but they have not been and will likely never be robbed of their innocence. Perhaps they do not have an abundance of carefree moments, but they do have a genuine sense of security.
It is a great challenge to create my ideal in terms of how I would structure my home and my time. That is to say: I am not succeeding in creating my ideal. I don’t anticipate success on that particular point, at least not until I finally submit to the truth that my ideal is not the Lord’s ideal for me.
I’m very sure that His ideal for us is attainable every day, and to the extent I give myself to that, we are having a fantastic experience with Leadership Education. After all is said and done, having a disabled child, or a child with health issues, as the case may be, is not the thing that brings me to this point. It’s just life. All of us, in one way or another, have to live with the fact that the Lord wants to put us to the ultimate remodel, to use someone else’s analogy. It’s inconvenient, noisy, dusty, exhausting, and ultimately feels like you’re in freefall. But he’s got a vision for us.
Having a frank talk with your kids about their feelings is a great idea to consider. A trip to Barnes and Noble (the internet is also a great resource, but really easy to get drawn into the drama of endless information) to look into books by parents of children with special needs is a great idea to consider. Praying for and with your spouse is a great idea (many marriages become increasingly strained by a special needs child element in the family). As you become clearer on the nature of G—-‘s challenges, feel free to contact me again with any questions you may have. I am constantly contacted by people with ideas that might be helpful for Hyrum (everything from essential oils to full-blown alternative therapy programs), and I will freely share anything that might apply to your situation.
I do encourage you to enjoy your family and your baby. Probably you won’t have the luxury to do it right now in the way you might have envisioned, but the Lord has a vision of how you can do it. Tap into that and find comfort in knowing that His way is not just sufficient, but abundant.
p.s. in the event of the very real possibility that I told you what I wanted to say, and not what you needed to hear, please write back with your specific questions. I promise to stay on point next time.