ダウン症の子をもって

愛の在り処


重度のダウン症の子をもった両親がつづる物語。
母親の日記がもとになっていて、作為的な盛り上がりもなく、淡々と、ダウン症の我が子と送る日常が描かれた本。
でも、その日常は、僕たちが日常だと思っているものとは、だいぶ違う。

専業主婦の母親と、大学教授の父親が、代わる代わる執筆する構成。
日記のように日常的なことを書き連ねているだけなのだけれど、読みやすく、近すぎず、遠すぎず、適度な距離で書かれている。

だから、ダウン症の子を持った親の悲痛さが、とげはなくなっているんだけど、その分まっすぐこっちの中に入ってくる。

「こういう子は長くは生きない、とくに、この子のように心臓の奇型を伴う場合には、短命にならざるをえない」といわれたことは、せめてもの救いとさえ考えられなくもなかった。
これからの生活を思えば、彼が生きつづけることは、なによりも彼自身にとって、深刻に不幸なことでしかありえないように思われたからである。とくに家内には、先は真暗闇にしか感じられなかったと思う。

また、息子の友達、同じように障害を持っていた子が亡くなった時、

その後、まもなく、私も、私の家内も、この母親と会い、短い言葉を交わす機会をもっている。彼女は、私の家内にぽつりといったという。
「これでよかったのです。あれを残しては死ねませんからね」
それは、障害の子をもったすべての親が心の底にいつも抱きつづけている問題なのである。

障害に差はあれど、重度の障害を持った人は、ひとりで生きていけない。
もちろん、真の意味でひとりで生きている人なんて、いないと僕は確信している。
ただ、親や、施設に生活の面倒を見てもらわなければ、生きていけないというのも、事実。
子の幸せとは何なのか。親が望む子の幸せとは何なのか。

そして、何よりつらいだろうと思うのは、こちらの愛情が向こうに伝わっているか、分からないということ。
違う世界に住んでいる彼ら。こちらから相手の世界を想像し、それに適した行動をしてあげることはできるけれど、向こうがこっちの世界を想像して動いてくれることは、ほとんどない。

母の日。
でも、ダウン症の息子には、もちろんその意味は分からない。

贈物などしてくれはしない、特別に感謝もしてはくれない、でもこうやって笑顔を見せてくれる子を腕にかかえて可愛いと思えるひとときがあればそれでいいのではないか、と思いました。日々の苦しさを考えれば、これも甘い母親の感傷にすぎないとも思うのですが、苦しみを通してしか子どもを考えられないこうした精薄児をもつ親のつかのまのしあわせも、大切にしたいと思います。

苦しみを通してしか子どもを考えられない、てのは、すごいね。
でも、その感情の結末は、愛情。

一見切ない言葉に聞こえるし、その切なさは変わらないのだけど、苦しみがあくまで通過点でしかないところに、この両親の深い愛情が見える。

なんだろうなぁ。
僕の力では想像しきれない生活だったり、考えがあるから、「感動しました」てのは、言えない。
そこまで共感を覚えられるほど、僕の想像力はまだ強くない。
だから、ただシンプルに、この両親の持つ愛情ってものを実感させられる。

で、この本を読んでいて、一番はっとさせられた部分。

息子がテレビのチャンネルを変えてくれと父親に頼むと、父親は自分でやりなさいと、さとす。
それは、息子の”自立”を考えてのことだった。

私が、あわてて、「回してやってくださーい」といいながら居間をのぞくと、彼がすでに、テレビの前でチャンネルを回していました。私は、たいへん惜しい気がしました。
彼は、あまり人にものを頼むことはありません。ふだん、もっといろいろ(言葉でなくても)いってもらいたいと思うくらい、彼は、自分のやりたいことは独りでやって、自分だけの遊びのなかにいることが多いのです。
それから、もう一つ、自分の頼んだことが受け入れられるということを知るのは、彼自身にとって大切なことでもあります。私たちが彼にものを頼んだときに、彼は、それをやってあげるものだと知るようになります。

ああ、そうか、と納得させられた。
と、同時に、”自立”の難しさを思い知った。

僕も、極力『自立派』というか、まず、自分でやる。基本的に、いいことも、わるいことも、自分の責任だ、というスタンスだ。
僕に子どもいないけれど、もし子どもが出来たら”自立”は大きな課題として、子育てをするだろう。

でも、同時に、子どもの願いを聞いてやる重要さを、知った。

子どもが何かを求めた時、応えてあげる。
「そうか、僕が求めた時、親は僕に応えてくれるんだ」という、愛情の実感。

これは、深く考えたことはなかったなぁ。

特に、障害を持った子の場合。

子どもの「できない」ことを、親は認めてあげるべきなのか。
それとも、子どもが「できる」ように”自立”させてあげるべきなのか。

もちろん、どちらが正しいとは言えない。
でも、だからこそ、この決めがたい選択にいつも親は迫られる。

淡々とした言葉の中に、深く、重い、親の苦しみと悲しみが垣間みれる。
でも、その苦しみの始まりは子を想う気持ちで、その終わりも愛情になっているところに、親の強さと愛を感じられる本です。

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